Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to the “Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help You Make Sense of it All.”  I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation. Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. Today, we’re talking about something that affects one in five Americans: Medicaid. You may have seen recent headlines about potential federal budget cuts, but let’s zoom in on what exactly that means for Medicaid, who it could affect, and what you can do about it. First, a little context: Medicaid is a joint Federal and State Health Insurance Program. It covers low income, children, pregnant women, people with disabilities, and many seniors – offering everything from emergency room visits and hospital stays to prescriptions and long term care. It’s the largest insurer in the country; roughly 78 million Americans, including nearly 40% of all children, rely on it. It’s also a major source of funding for states, bringing in billions in federal dollars. Since the Affordable Care Act passed in 2014, 40 states have expanded Medicaid to cover more low income adults. The move added coverage for about 20 million people.  Public support is strong too. A recent Kaiser Family Foundation poll found that 77% of Americans support Medicaid, making it one of the few bipartisan health care programs with wide approval.  So, what’s the threat? Well, Congress is debating a new federal budget, and early drafts suggest a massive cut to Medicaid. The House Energy and Commerce Committee, which oversees Medicaid, is tasked with finding $880 billion in savings over the next 10 years.  For perspective, the total federal Medicaid budget, in 2024, was about $600 billion. So, these are not minor trims we’re talking about; We’re talking about deep structural cuts.  Here’s how Congress may go about that. First, work requirements: One proposal would require adults on Medicaid to prove that they’re working. That might save money, estimated at $100 billion over 10 years, but it could also kick roughly 1.5 million people off coverage. Arkansas tried this a few years back, and GHLF openly opposed this at the time, and in Arkansas, 18,000 people lost health insurance. Many of these folks delayed medications, and there was no measurable increase in employment.  A second idea is federal matching cuts. Right now, the federal government pays between 50% and 77% of each state’s Medicaid costs. Reducing that match could leave states scrambling to fill the gap, likely through benefit cuts or shifting costs to hospitals and patients.  Another idea is rolling back expansion support. The Federal Government currently covers 90% of the costs for Medicaid expansion under the Affordable Care Act. Lowering that share would force states to shoulder more of the burden, potentially leading them to scale back programs.  So, what’s at stake? If these cuts go through, millions of Americans could be affected. That includes people living in poverty, those with disabilities, seniors who need long term care, and working adults who lost employer coverage during the pandemic, or even more recently. When people lose insurance, the consequences are real – There are delays in seeking care, there are skipped medications, there’s worsening of chronic conditions, and yes, even bankruptcy for medical bills. Health care providers will also feel the impact facing tighter budgets, possible salary cuts, and staff reductions.  So, why is this happening, and why is this happening now? Supporters of the cuts argue it’s about controlling government spending, and there’s no doubt that health care is expensive. For example, in 2024 alone, New York state spent over $101 billion on Medicaid. But slashing Medicaid funding isn’t just a matter of tightening belts; It’s about how we value our public health and who we think deserves access to care.  So, what’s next? Here is the timeline to watch: For the spring and summer of 2025, congressional committees will draft legislation to meet the budget targets. Again, $880 billion in cuts from the Energy and Commerce Committee. In the late summer, Congress is likely to vote on these proposals. In October of this year, final bills will likely go to the President for a signature or a veto. So, what can you do? This is a pivotal moment, but there’s a lot of time to act. Here’s how: check in on neighbors or loved ones who may be on Medicaid, help them with their renewal forms. Sometimes a little paperwork is all it takes to stay covered. Make sure friends and family that you know remain on coverage. Call your representatives, tell them what matters to you when it comes to public health. There are apps and all sorts of sites that make it easier to find out who your representatives are, there are even sample call scripts and contact information based upon your zip code. Stay informed: Keep up with all the important news by following GHLF on X, LinkedIn, Facebook, YouTube, and Instagram. Medicaid isn’t just a line item on a budget, it’s a health care lifeline for millions of Americans. If the proposed $880 billion in cuts goes through, many will lose that lifeline, but we still have time. Congress hasn’t finalized anything yet, so keep watching, keep speaking up, keep listening to “The Health Advocates” in all of our podcasts; we will continue to keep you informed! If you found today’s episode helpful, share it with a friend or a colleague, and be sure to leave us a review, as it will help more people like you find us. Be sure to check out all of our podcasts at ghlf.org/listen I’m Steven Newmark. We’ll see you next time.

Narrator  05:45

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:06

Welcome to the “Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help You Make Sense of it All.”  I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation. Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. Today’s episode is packed: Measles cases are on the rise; Dengue season is starting early; The FDA might finally be cracking down on food dies; and then Novavax COVID vaccine story just took a twist. Plus, what is the vaccine integrity project? And why should you care? Whether you are a health policy Pro or navigating chronic illness, we’ve got you covered with the context that matters most here at “The Health Advocates.”  Let’s start with infectious disease. Measles cases are surging, with 923 reported nationwide as of the close of business on May 3rd. That’s inching close to the highest number in 25 years, and we’re not even sure how far in we are. Reporting is inconsistent, and we may actually be underestimating the true scope. Here are some key points to note: Texas hot spots; In Texas, there have been 29 cases reported so far in El Paso in just the past 18 days. Cross border alert; There have been over 600 cases reported in Chihuahua, Mexico. Public concern; 76% of Democrats have expressed concern, according to recent surveys by only 28% of Republicans say that they’re worried. That’s according to a poll conducted recently by the Kaiser Family Foundation. There’s a political divide that’s clearly complicating a unified public health messaging with regards to the measles outbreak.  Meanwhile, dengue fever, often called break bone fever, is creeping northward. It’s usually a tropical disease, but climate change and travel are shifting the map. Some key facts to note, there have been 1568 cases so far, starting from last fall, 2024. Most of this is from travel. Hawaii has reported more travel related cases than usual for this time of year. The risk remains low in the continental United States, but prevention still matters. As we enter summer season, be sure to apply insect repellents that are particularly deep based repellents which are highly effective. Big takeaway for patients: If you live in or travel to high risk states or territories such as Texas, California, Florida, or Puerto Rico, keep a bug spray handy. Prevention is your best defense.  Now, let’s talk about food dyes. You may have heard that Red Dye No. 3 is already on its way out. Now, the Health and Human Services department is proposing to phase out other petroleum based dyes, but not through a formal ban. This is more of a handshake agreement with the food industry. Key details: Only two dyes have been revoked officially, those are Citrus Red No. 2 and Orange B. There are six others that have been discussed being removed, but these would be voluntarily phased out by the food industry. There’s no clear timeline on the removal of these dyes, and it’s not clear whether this will actually come to fruition. Europe, by the way, uses many of these same dyes under different labels, so there may be global pressure growing on these food providers to switch to more natural ingredients. Few things to note from a health policy lens, natural dyes are more expensive, they’re a little less consistent, and they may trigger allergies. They could increase food prices and waste so labeling transparency will be key. For patients, this likely won’t affect your pantry in the coming days and weeks, but it’s worth watching. If you or your child has allergies or sensitivities, keep a close eye on labels. It could also affect the costs of products with dyes. I guess one way to avoid this is to eat natural foods only; That’s probably what your doctor would tell you anyway. Veggies, fruits, nuts – keep it natural for your health! Now, on to vaccines, specifically the Novavax COVID-19 vaccine. Unlike Pfizer or Moderna, Novavax is a protein based shot. It’s been in-use under emergency authorization, but the full FDA approval has been a bumpy ride. Approval had been expected on April 1st, but it was paused after the FDA leadership shakeup under the new administration. It’s currently back on track, but the FDA says that a new clinical trial is required. This could also eventually affect Pfizer and Moderna down the line. The key context: vaccine updates now follow the flu model; they tweak the strain, they test immune response in a small group. When the real world data shows protection, especially for those 65 and over, approval is generally given. So, the policy question is, why are they changing this now? Is this because of emerging science or because of politics? And if new trials are required for Novavax and other vaccines, will this delay fall booster shots? We will find out. The key takeaway for patients is that for those over 65 or the immunocompromised, which is many of our patients, stay in touch with your provider, timely access to updated vaccines could be affected by these policy shifts.  Our last topic today is something that happens behind the scenes with concerns that ACIP, the committee that sets vaccine policy, could become politicized. A new group has formed the vaccine integrity project. What is it? It’s an organization set up by the University of Minnesota. It’s privately funded, and it includes eight experts providing independent vaccine guidance, especially if the official process breaks down. Why does this matter and what does it mean to you? Well, this group has no formal authority, but in the absence of other information making it into the world, third party credibility can matter a lot. This could be critical if we see eligibility criteria or access rules suddenly change at the federal level. A key takeaway, if you’re a clinician or a policy advisor, keep this on your radar, it could become a trusted alternative source in certain times that, once again, it’s the vaccine integrity project.  And for continued updates and access to our recent coverage of the world vaccine conference, be sure to visit ghlf.org\vaccine-resources. That’s ghlf.org\vaccine-resources.  Well, from rising outbreaks to regulatory rumblings, the public health landscape is shifting. Whether you’re advising patients, or living with a chronic illness yourself, staying informed is your first layer of protection. If you found today’s episode helpful, share it with a friend or a colleague, and be sure to leave us a review, as it will help more people like you find us. Be sure to check out all of our podcasts at ghlf.org/listen. I’m Steven Newmark, we’ll see you next time.

Narrator  06:39

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:06

Welcome to the “Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help You Make Sense of it All.”  I’m your host, Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation. Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. Today, we’re joined by Cristina Montoya. She’s the owner and founder of the Arthritis Dietitian. She’s also a person living with Sjögren’s and rheumatoid arthritis. Cristina is passionate about helping women with Sjögren’s and rheumatoid arthritis adopt a non-restrictive, anti-inflammatory lifestyle while supporting their gut health. And she’s here with us as we close out Sjögren’s Awareness Month.  Welcome Cristina. Thank you so much for joining us today.

Cristina Montoya  00:48

Thank you so much for having me here.

Steven Newmark  00:50

Can you tell us a little bit about the work that you do and something about your background?

Cristina Montoya  00:54

I’m a registered dietitian in Ontario, Canada, in Colombia, South America, just to clarify that, and I’m the owner and founder of Arthritis Dietitian. I have lived with rheumatoid arthritis and Sjögren’s disease for more than 20 years, and one of the things that I do is that I specialize in anti-inflammatory nutrition and arthritis friendly eating to help individuals with inflammatory arthritis, especially those with rheumatoid arthritis and Sjögren’s disease, in making informed nutritional and lifestyle decisions to improve their gut health, their quality of life, without unnecessary restrictions.

Steven Newmark  01:33

Excellent. And can you tell our listeners a little bit about what Sjögren’s actually is?

Cristina Montoya  01:39

Let’s see. Let’s talk a little bit about Sjögren’s. So, the first thing that you want to know about Sjögren’s is to actually how to pronounce it. I would start there, right?

Steven Newmark  01:46

Let’s start there.

Cristina Montoya  01:47

So the way I explain, okay, how to say Sjögren’s. Just think about the TV ‘show’, ‘show’ and then ‘grin’. Can you say it for me? “Show…grin.”

Steven Newmark  01:57

“Show” “grins” (Sjögren’s)?

Cristina Montoya  01:58

There you go. You see how it sounds better?

Steven Newmark  02:01

Yeah, excellent.

Cristina Montoya  02:02

So, that’s the first thing that I did. There was actually kind of, what a few definitions of Sjögren’s disease, because just until just 2024, it was known as Sjögren’s syndrome. So, I like the definition by the OMERACT Sjögren’s working group, in which I’ve been participating as a patient partner for almost two years. Sjögren’s is a systemic autoimmune disease that affects the entire body, along with symptoms of extensive dryness, other serious complications can include profound fatigue, chronic pain, major organ involvement, neuropathies, and even lymphomas. Nine out of ten Sjögren’s patients are women, and the average age of diagnosis is usually 40, although it can occur in all age groups, however, and I want you to keep this in mind, is that the Sjögren’s is a slowly kind of progressive disease. So, maybe you’re diagnosed at 40, but you probably started to feel the symptoms 10 or 15 years earlier.

Steven Newmark  03:11

And what are those symptoms?

Cristina Montoya  03:12

So, the symptoms are, typically, there is like this triad that they call it: Do you have profound fatigue, joint and muscle pain, and dryness? So, they could be a little vague, right, because many rheumatic diseases can present with similar symptoms. So, how do I know, like, is it Sjögren’s, is it fibromyalgia, is it another rheumatic disease? I started to learn, right? Because for many years, I was actually diagnosed with fibromyalgia. But then, along with that fibromyalgia, I also experienced like, extreme dry eyes, and then there was some erosion to the cornea. So, the ophthalmologist started to say, “That’s very strange, you’re not on any medications that is causing dryness.” The environment is pretty humid, because I used to when I was living in Colombia, so we didn’t have the dryness that we had here in North America. So, he started raising some like, red flags. It’s like, this is not really normal. And what’s interesting is, for many patients, actually, the dentist and ophthalmologist are the ones who start raising those red flags and suggest the patients maybe you need to talk to your doctor and get assessed for Sjögren’s.

Steven Newmark  04:24

Right. So, and then what happened?

Cristina Montoya  04:26

Well, And then what happened is that something even more interesting, because with Sjögren’s, it’s more like a clinical diagnosis. My understanding, and even just found recently in attending the ACR convergence in 2024, there is actually not a defined diagnosis criteria. What typically the doctors use to diagnose Sjögren’s, it’s based on the symptoms, the clinical symptoms, they may take some lab work to assist presence on auto antibodies that could be more specific to Sjögren’s, although it could be up to 40% of the patients who don’t even show up with those autoantibodies. They could use a lead biopsy to see if there’s any lymphocytic infiltration that could suggest the presence of these autoantibodies. And typically, that’s what they use to kind of fully diagnose Sjögren’s, for instance, and I’ll just share my own experience, because I’m not a rheumatologist – I want to just make that clear. When I was diagnosed in Colombia, I was in my 20s, but actually my symptoms started when I was around seven or eight years old. And how my Sjögren’s began as a child, it actually was different from how it presents with adults. So, as a child, I have chronic parotitis is, or like swollen salivary glands, that even the doctors thought that I have recurring mumps, you know, like the viral infection, and that we know, like an infectious disease that could happen maybe once or twice, but to happen every six months was very rare, but it’s still the doctors didn’t know what was going on with me. So, that was my first primary symptom as a child. Then around when I was 10 years old or so, I started developing dry eyes, so I couldn’t cry. I was the kid who would never cry; I couldn’t swallow; I have very difficulty swallowing; I have a lot of digestive issues. My mom had to take me to the doctor almost every week, they still couldn’t figure out what was going on. I had fatigue; My mom said that I couldn’t keep up with my peers in sport or playing outside, I was, you know, I was the one that was picked last or not picked at all, because I couldn’t keep up with my peers. As sometimes I have trouble concentrating at school, and I’d lost a lot of weight when I was teenage years, so no one could figure it out. I waited to multiple doctors and until I was diagnosed with rheumatoid arthritis at 21, which presented like very rapidly, my symptoms for rheumatoid arthritis showed up within two months, and within two months, I was already like bedridden. So, once the rheumatologist diagnosed me with rheumatoid arthritis, he started asking me questions about the dry mouth, dry eyes, and the swelling of my salivary glands, and he immediately said, “Oh, it sounds like Sjögren’s syndrome,” like I can see arthritis, my joints are swollen, but what is Sjögren’s? So, that’s just how it started with Sjögren’s. And finally, on April 12th, I saw that the Sjögren’s Foundation recognized the Pediatric Sjögren’s Awareness Day, and I was so happy, so happy to see that.

Steven Newmark  07:49

So, you’re a dietitian, are there particular foods that folks with Sjögren’s should look to imbibe, or the opposite, avoid?

Cristina Montoya  07:56

What I learned with Sjögren’s, so overall, we want to for any rheumatic diseases that we want patients to eat an anti-inflammatory way of eating, or think about the Mediterranean diet, and how we want to include more all those foods with more antioxidants, you know, more fiber, whole grains, fruits and vegetables, nuts and seeds. So, all the principles apply to individuals with Sjögren’s. What makes it unique, though, is that I always say, and I’ve been saying this for the past three years, that Sjögren’s impact your entire gastrointestinal tract, from gum to bum. Why? Because, if your mouth is dry, Sjögren’s impacts the production of saliva, and not only in quantity, but also quality. And where does digestion start? It starts in your mouth with the breakdown of carbohydrates. So, if you don’t have enough saliva, that’s when you start kind of getting trouble with Sjögren’s and the way you start eating. So, you start modifying the texture of your food. So, maybe a healthy person, even a person with rheumatoid arthritis without Sjögren’s, could eat a salad, but ask a person with Sjögren’s and have, let’s say a pale salad is torture, because it’s a roughage; It’s hard to chew. We don’t have enough saliva to form a cohesive bolus to help it swallow. So, then we tend to use or drink water, or any liquid, to push down that food that hasn’t been properly chewed up, so it goes down to your stomach, and the stomach has to work extra hard for it, so that leads to more heartburn and bloating. Then Sjögren’s can also impact the motility. So, I’ve seen a lot of patients, more than 50% of patients with Sjögren’s present with constipation. So, if you have constipation, then that means that you’re probably going to feel more bloated, you’re going to be more uncomfortable. So, I find that the nutritional needs for patients with Sjögren’s are actually very unique compared to other rheumatic diseases. So, I focus on foods that are comforting for your mouth, starting with your mouth, so trying to avoid a citrus foods, for instance. But if you’re gonna have, let’s say, some citrus foods, try to pair it with something that is more has, like less acidity, right? That you want to have, like a plant based beverage, or you want to have yogurt, so it’s more comforting for your mouth.

Steven Newmark  10:20

And you should avoid kale, you said, and other leafy greens, or?

Cristina Montoya  10:25

Just be careful with like the tough texture. So, the tougher textures, not that you cannot eat it, then you can maybe modify how you cook it. So kale, you can maybe just use it in your pastas and then stir fry; that type of things. Just don’t feel bad if you can’t have a salad, because, oh my god, it’s so healthy. I just this is how I have to eat, but it makes me sick. It makes me literally sick. So, what I teach patients is like, don’t feel bad, like, because you cannot eat the salad that everyone is promoting, that you have to eat. Okay, there’s other ways that you can add that kale; You can make a smoothie; You can add it to your soups; You can add it to your pesto for the pasta; You enter your stir fry; You can bake it; You can make, like, kale chips, kind of thing. So, you see, it’s about modifying the texture, that is, that you don’t have to follow kind of the typical type of healthy eating. And you can make modification, and that’s okay, too.

Steven Newmark  11:19

Right, interesting. What about as a smoothie? Would that be helpful or putting vegetables in there?

Cristina Montoya  11:24

Yeah, absolutely. However, smoothies can be like this. I would call it like a FODMAP bum. So, you’re not familiar with FODMAPs until the foods are or, like, high FODMAP foods, or like, like highly fermentable carbohydrates. And sometimes, like I explained to you, patients with Sjögren’s can present more with irritable bowel syndrome, that can be more sensitive to those types of carbohydrates. So, smoothies are tricky. You want to make sure that they are not super like super-charged with FODMAP. So, let’s say you’re gonna make a smoothie with let’s say you add the kale, and you add apples, and you add seeds, and you add those so much fiber into just one smoothie that you’re probably gonna feel it within the next three or four hours, feeling super bloated. So, what I suggest for a smoothie, and especially, when you’re now feeling a lot of energy to cook. So, smoothie could be a good alternative, but what you want to make almost like a meal at that smoothie. So, yeah, kale, spinach is great. Those greens are great for that. You want to add some like berries that are not super high in FODMAP and not to overdo it. So, you want to add some blueberries, or you want to add some strawberries, maybe you want to add a little bit of banana. But if you add those three fruits, please do not add avocado, because avocado will just be a bomb for it. Then you want to add a little bit of quinoa, like a cooked quinoa, like two, three tablespoons of cooked quinoa, or two, three tablespoons of oats, just to add a little bit of carbohydrates, and a little bit, like a more soluble fiber to that smoothie. Add some plant based beverage, a little bit of yogurt, and maybe a little bit of honey or maple syrup, some vanilla extract, cinnamon, and there you have your smoothie.

Steven Newmark  13:11

Wow! Well, thank you for that advice. That’s, that’s, that’s good to know. So, you’re not just a dietitian, but you’re also an advocate in the Sjögren’s community. What inspired you to step into that role of advocacy?

Cristina Montoya  13:22

I would say I was an accidental advocate, I tell you, even though I was diagnosed in 2003, only when I came to Canada, and, in 2015, it was the first time that I attended a Sjögren’s conference for patients, and I couldn’t believe that I saw like over like, 300 people. “Wow, more people have Sjögren’s? Not just me.” So, from that point on, I started looking more into my own experiences with managing my digestive issues, and I started connecting the dots. And then from there, I started running so many webinars for the patient support groups in Canada. I also started to attend more and more conferences. I even wrote an article for the Sjögren’s foundation for the newsletter. But I truly started being very, very active, I will say it in 2022: I submitted a workshop proposal for the Canadian Rheumatology Association Annual Conference on the gastrointestinal manifestations of Sjögren’s, and that caused the doctor’s attention. Then, slowly, I started to expand that knowledge, and I ran some free webinars for patients on the gastrointestinal manifestation some in Sjögren’s, such as how to manage dry mouth, swallowing difficulties, heartburn, constipation, exocrine, pancreatic insufficiency. And all of a sudden, I started to be known as someone who understands Sjögren’s, not only from the nutritional standpoint, but also as a patient. Because I’ve been living with this pretty much my whole life.

Steven Newmark  15:03

Interesting, yeah. What are some misconceptions about Sjögren’s that you try to correct through your advocacy?

Cristina Montoya  15:08

Oh, boy, there are many. There’s an online forum called Smart Patients, I don’t know if you’re familiar with it, but there is a sub group and an online forum that is specifically for Sjögren’s, and Dr. Schafer, who is behind the Sjögren’s advocate, and also Dr. Bexi (Rebecca) Lobo, we all started asking questions, okay, what are these myths about Sjögren’s that we just want to tell people that that’s not Sjögren’s. So, I will tell you, I posted them on Instagram, actually for this month, because April is Sjögren’s Awareness Month. Sjögren’s is not just a nuisance dry disease. It’s never just dryness, just like I explained, Sjögren’s can impact every organ and system in the body, and some manifestations of Sjögren’s can be life threatening, so that we have a higher risk of developing like lymphoma. Some patients are really treated. I’ve seen patients with no treatment at all, completely receiving disability benefits because of the manifestations of Sjögren’s. So, all these myths are part of what is called the Sjögren’s elevator pitch that I mentioned to you, that was developed by Sjögren’s advocate in collaboration with the members of Smart Patients. It says that Sjögren’s is not disabling, right? That’s the myth, but the reality is that Sjögren’s is disabling. Many people have to change their career, or even end their careers because of Sjögren’s. It’s not laziness; it’s the disease that limits what people can do. Debilitating fatigue and pain often severely impact the daily life, unlike just the normal tiredness of your daily life, and it doesn’t just improve with proper eating, and proper sleep, just go exercise. Those things are important, but does downplay the disease. When someone just tells you, just eat, well, just exercise, and it really downplays the disease, because the fatigue, I tell you, is so profound. It just puts you in bed and you have just energy for like nothing – It’s very frustrating.

Steven Newmark  17:21

No, I could imagine. Well, thank you for taking the time to come on our program, especially during Sjögren’s Awareness Month. Getting the word out there as to the disease, and some symptoms to look out for, and how to take care for yourself when you have the disease is so important.

Cristina Montoya  17:35

No, you’re very welcome. I could speak about Sjögren’s like for hours.

Steven Newmark  17:38

I’m sure. So, now we have with us on the program, Erik Stone, my colleague from GHLF. Erik, hi, can you share for our listeners what your role is at GHLF?

Erik Stone  17:48

Hi Steven, thanks so much for having me on this episode today. I’m Erik Stone, I’m the Director of Data, Learning, and Evaluation at GHLF. My job is to design education initiatives that meet the needs of our various patient communities. This involves everything from surveying patients to building those educational resources. Basically, you could say my job is to translate patient voices into action.

Steven Newmark  18:13

Excellent. What’s the importance of staying up to date with community education and support needs?

Erik Stone  18:19

I think that staying up to date with community education and support needs is absolutely essential, especially for a condition like Sjögren’s that is often misunderstood. As Cristina pointed out, the way that I see it, the needs of patients aren’t static. They evolve as new research emerges or as treatments change, and as people’s lives and challenges shift over time. So, if we’re not actively listening and updating what we offer, we risk giving people information that feels outdated or is irrelevant to what they need, essentially, the how and the what of education have to adapt to meet the needs of the moment. Otherwise, we’re speaking to yesterday’s needs and not the reality of today.

Steven Newmark  18:59

And GHLF recently ran a survey about experiences of people living with Sjögren’s. Can you talk about that survey?

Erik Stone  19:05

We surveyed 148 people living with Sjögren’s to better understand where there were possible unmet needs. A few key takeaways that stood out to us from this initial analysis. The first question we asked was, “What information or resources would be most helpful to you?”, and managing symptoms and flares was the top need, with 84% of respondents selecting that one. Fatigue management was right behind it, at 82%, and dry mouth and eye care tips were also highly requested at 82%. So, I think this data shows how much patients are navigating the ongoing and, frankly, very disruptive daily symptoms, and possibly represents a need for more strategies that they could use in their daily lives. So, one other thing is that if there’s any Sjögren’s patients listening now, and this data resonates with you, we really would like to encourage you to also take this survey and share your experiences with us, and we’ll make sure that’s linked in the episode description for you. But Cristina, after hearing that more than 80% of the patients we surveyed indicated that they wanted more information on managing symptoms and flares. Do you relate to this data? And if so, can you explain the impact of managing your symptoms and flares every day?

Cristina Montoya  20:23

Yeah, absolutely, I do relate to that data, especially, because there is not an actual definition of a flare up in Sjögren’s. So, when you ask someone, what does a flare mean to you? So, for some may be, oh, I feel this extreme dryness that I it’s just truly, I can’t even eat or swallow anything, or I have a mouth source that I they’re very painful, whereas, again, is the dry eyes that they can do hers is just that profound fatigue. And it also can maybe shift different types of the year, right? It also during the time, this time of year, when we have transitional weather, spring time, especially, so we tend to have more flare ups. So, we definitely need more attention in terms of how to manage those symptoms in fatigue. Then keep in mind that probably is some of us like, let’s say 30% of us may have associated diseases, autoimmune diseases, so we are, let’s say, fortunate to be getting some treatment for those diseases, specifically like rheumatoid arthritis. But for those who don’t have any associated treatments, I think they are the ones who are suffering the most, because they are really struggling how to explain this disease to their friends, to their family, to even to their doctors, because they simply dismiss them as well. “It’s just dry eyes and drama, just put some eye drops in your eyes and then you’re fine, or just sleep well and eat well.” So, I think we need to pay attention like the message that we’re sending, and to provide support to everyone, not only those who present like the positive disease, let’s say, on the lab work, but also those who are really suffering in silence, like those who are like zero negative patients.

Erik Stone  22:05

Yeah, it makes me think back to the misconception you spoke about earlier, with the level of disability that Sjögren’s can often cause, and how there’s this misconception about how serious it is. So, since I have you here right now, and I spend my all my time looking at data, but actually being able to speak to speak to a patient is one other thing. What would you identify as the number one need of the Sjögren’s community right now?

Cristina Montoya  22:28

Well, I agree with Dr. Baer, like I say, I wrote a blog post about his wonderful presentation at the ACR Convergence, and the patients are looking to improve the management of the data centers such as fatigue, muscle, and joint pain, dryness and neuropathy, right? Like that nerve pain. And for some patients are also being diagnosed with dysautonomia. The patients we want to reduce flare ups in see we want a target treatment that is just for us, right for Sjögren’s. We don’t want to borrow treatments from other diseases. We might need to do that. But can we just have something that is just for us?

Erik Stone  23:12

Yes, you can. So, I want to get into that a little bit deeper, actually. What do you think needs to be done to meet this need? Is this something that there’s stuff on the patient side that needs to be provided, or is this something that falls on the providers or the pharmaceutical companies? Or where do you think the solution is to this need?

Cristina Montoya  23:30

Let’s start with the words matter. If you go to the American Rheumatology Association and in their website you’re still calling it Sjögren’s syndrome, there is a problem. It will still have these important sites that where patients go to, all the doctors go to to get the up-to-date information, but you’re still getting outdated data just that, even naming the disease and the impact. So, I think we start failing the patients just right from there, because we’re not giving the right education to the physicians who are supposed to take care of us. Another thing that is a burden to us, and I really don’t like this message sometimes, as I got you as a patient, you need to be empowered, and you need to educate yourself so you can go out with your tools and talk to your physician. And I said, “But why? Like, I’m here look for health and for answers.” And many patients actually go like, almost, you look at like, you just a patient, and you don’t know what’s going on. I’m your doctor, and this is what’s gonna happen. So, it’s like, always in this constant battle to prove what you have so it will improve the education from the very beginning at the medical schools, and to really get physicians to understand what is happening with this disease alone, as if you’re teaching about rheumatoid arthritis, and lupus, and even Sjögren’s disease is shown to be more common than lupus. So, why aren’t we understanding that from the medical schools? Sorry, I just got passionate there.

Erik Stone  24:58

No, I’m so glad that you said that education is never one person’s responsibility; There is always a two-way-street. And yes, I agree it is so unfair that often that burden of staying educated falls on the patient instead of the people that are supposed to be providing the education. So, I totally relate to your passion for that question, and just want to thank you for this entire conversation. Actually, this has been so insightful to me and really complimentary to the data we’ve already collected, and I hope we can build something that’s really meaningful for Sjögren’s patients.

Steven Newmark  25:27

Well, thanks Erik for continuing on with those questions with Cristina, and thank you, Cristina, for taking the time to be with us today. We look forward to more results from our ongoing survey.

Cristina Montoya  25:36

Thank you so much, and I’m looking forward to seeing all this wonderful work and, potentially, collaborate with you.

Steven Newmark  25:42

Well, I want to thank Erik and Cristina on another great episode of “The Health Advocates,” we’ll drop links in our show notes to all of the mentions that Cristina gave us today, as well as to our ongoing survey for Sjögren’s patients. Well, everyone, thanks for listening to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you liked this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Steven Newmark. We’ll see you next time.

Narrator  26:12

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.

Zoe Rothblatt  00:18

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:22

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:28

And speaking of the health care world, today, we’re joined by Gaile Valcho who’s the Founder and President of the Brady Valcho Autism Foundation. I had a really great conversation with her about her role in caregiving for her son, who has autism, realizing there was a lack of resources in the community, and how she helped fix that need. And then also her own lupus journey, and what it’s like to be a caregiver while managing a chronic illness.

Steven Newmark  00:52

Great! I’m looking forward to listening, and let’s get into it.

Zoe Rothblatt  00:56

Hi Gaile, welcome to “The Health Advocates.” We’re so excited to have you here. Can you begin by introducing yourself to our listeners?

Gaile Valcho  01:04

Hi, thanks for having me. I’m so happy to be with you this afternoon. My name is Gaile Valcho. I’m the Founder and President of the Brady Valcho Autism Foundation, and I live here in Holly Springs, North Carolina, with my husband and my son, Brady.

Zoe Rothblatt  01:18

Awesome. Well, yeah, let’s get into it. Can you tell us a little bit more about the Brady Valcho foundation and kind of like what inspired you to become an advocate for the autism community?

Gaile Valcho  01:30

So, my son, Brady, was diagnosed with autism at the age of two and a half. Then we lived in South Florida, when we received our diagnosis, and I sort of had a career at Carnival Cruise Line, and I had ramped off of that to be with him full time, because in the beginning, we took Brady to seven appointments a week, and it was a lot. But my advocacy work didn’t really sort of take hold until we moved here to Holly Springs, in 2016, the summer of 2016, and what I found when we moved here to our new community was there was a lot of resources that were lacking, that we had in place and that we curated for Brady in our town of Parkland, Florida, in South Florida.  So, when we moved here, I was really surprised that I couldn’t find the same social skills groups, and recreational programs, and therapeutic providers that we had when we lived in Florida. So, I kind of took stock of my new community, which I loved, but I took it upon myself to create the Holly Springs Autism Acceptance Day Event with my husband. And also at that time, I was involved in the local running club, and there were some police officers that were also in the club with me. And one day, we were on a run, and I was talking about our son and the transitional struggles he was having, you know, moving here to a new city, in a new town, in a new school, and also the lack of resources. So, all of this was giving Brady a really hard time. So, I was explaining it to the captain at the Holly Springs police department, and I said, “What kind of training do the police officers get, specifically, to children with autism? My son is now starting to elope out of the house.” Luckily for me, I was a runner, so I was able to catch him, but I was worried that he was going to wander into a neighborhood and get lost, and it was very woodsy where we lived, and then maybe I wasn’t going to be able to find him. So, the police department really wanted to also get involved in the autism community; they just didn’t know what to do. So, I came up with a plan to have this big community event, free event, for everybody. And I brought my plan to the chief, and he loved the idea. So, the first Holly Springs Autism Acceptance Day Event was born, and in 2017, and it was held at the police department, outside on their grounds. And that very first one, we started with just 10 tables of resources, and a food truck, and a DJ, and a bounce house.  I got everything donated, and we opened it up to the community, not just for children who were autistic, but for any child with a neurodiverse disability, and other kids in the in the community too, everybody was just welcome to come, because it was like a super fun day. And my husband and I were very nervous about, while I was the night before, I just thought, “Oh gosh, it’s gonna be me, you, Brady, and a bunch of police officers,” you know, at this event. When it started, you could just see the cars were just parking, and parents were just coming with their children, and just kept coming and coming. And it really was like that movie Field of Dreams – I don’t know if you ever saw it – but, that’s kind of like they just kept coming and, you know, bringing their kids. And we had just had our eighth one this past November, so for eight years…

Zoe Rothblatt  05:02

Congratulations.

Gaile Valcho  05:03

Yes, thank you, and it’s grown considerably. So, we’re very proud of it.

Zoe Rothblatt  05:07

Congratulations. Eight years is incredible. And I’m kind of just like remarking on the fact that you set this up to kind of look for acceptance and resources for your son and other people like your son, and then, like, your time out the night before, you were like, “Oh my gosh, is it just gonna be us?” And, you know, you’re approaching the chief and like, it’s like you’re also getting, like, the acceptance of you and like what you’re standing for. So, I just think, you know, it takes so much guts to go out there and say, like, I’m dealing with this. I gotta imagine other people in the community are and I’m noticing the lack of resources. Probably, I can imagine, I guess this is my question for you, like, did people come up to and say, like, “Oh my gosh, thank you, like, we didn’t even know these resources could exist,” because sometimes, like, when things are lacking, that’s just your normal, and you came into the situation saying, like, “This is abnormal, like, there’s so much we could be doing.”

Gaile Valcho  06:01

Yeah, exactly to your point. I did it because I knew that if I was struggling to find resources, there were other families struggling to find the same resources. And at that time, Holly Springs was a place I had never heard of before, before I lived here, but was really growing. It was growing in size, and companies were coming here, you know, tech companies were coming to the Raleigh triangle area. So, we were getting a big influx of families from all over, all out of the country and different states. And right now, one in 34 kids are being diagnosed with autism. So, it’s really not just a question of if I’m going to meet a kid with autism, just when I’m gonna meet a kid with autism.  So yes, I could have just sat home and complained about it and did nothing, but I’m a New Yorker.

Zoe Rothblatt  06:50

I can relate, yeah. *laughter

Gaile Valcho  06:52

I just saw an opportunity to develop something and to contribute to my community, both my autism community, and my community where I actually live, and where my son lives and goes to school, and provide for other families, not just for my child. So yes, I get parents that come up to me at every single event and says, “We’ve met the speech pathologist that’s changed my daughter’s life,” or “My son looks forward to this event every year, and always ask, are we going to the Brady Valcho Autism Event?” You know, because it’s really such a fun day. We have not just the first responders in terms of police, but we have the fire department, they come with the fire truck, we have a magician, we have a DJ, food trucks, sensory activities. So really, what we’re getting is just a day that you can come with your child and we accept them for who they are, what they are, and it’s a judgment free zone. It’s a safe space for everybody. Parents are meeting other parents, children are dancing with other children, and it really is just an incredible three hours.

Zoe Rothblatt  08:01

Yeah, I love that. I think the notion of community support is just so important when you’re dealing with not just autism, but like, a chronic condition, whatever you’re dealing with that’s impacting your life on a daily basis, it’s just so important to find people that are dealing with the same thing, and, you know, be able to lean on them for support and also fun, like you’re saying, it doesn’t always have to be high stress. I’m sitting here, you know, complaining or overwhelmed. There are people out there that are feeling similarly, and they’re also feeling the good parts of it and the fun parts of it with you.

Gaile Valcho  08:33

It can be a very isolating time in a family’s life when your child is struggling with something like autism, just I know for us, in the beginning, we were in South Florida, you know, like I had mentioned, the seven appointments a week, the daily grind of that doesn’t leave a whole lot of time to do other things. And definitely, my son wasn’t always in a certain place where we could socialize, or I could take him to a playground, or he wasn’t always getting the invitations to the birthday parties, you know, and the ones that we managed to go to, maybe we could do 15-20 minutes to where we were getting overwhelmed. So, that can be very isolating to a family. There were times when I just couldn’t even get to Target; I’d get to the parking lot, and Brady was just like, “Not having it today,” and then I would turn right back around and go home.  So, the day is, you know, providing those much needed resources of therapy, schools, camps, you know, recreational programs that are out there. And now that Brady is 17, I place transitional services, you know, because what’s going to happen for him next, right? What’s in his next chapter of his life? And we’ve seen over the years that we’re getting older parents coming with their older children, not just the real like little kids, you know, the 4, 5, 6-year-olds, but the teenagers are coming and the young adults are coming. I get autistic individuals in their 20s and 30s that come and they want to see, you know, what, what transitional and independent living skills, you know, can I go work on and how can I go obtain a job in my community? So, we’ve kind of made sure that those services were in place now at this last event, and, you know, and giving the the parents and the caregivers a sense of well-being and community as well.

Zoe Rothblatt  10:23

Yeah, I was actually just thinking that as you were talking, I love how you include the whole family and caregivers. It kind of just sounds like it’s an event where you know all are welcome to come and use your resources, which is just so important. Because, I mean, you know, there’s so much caregiver burnout, and while we love to care for our loved ones, it definitely does take a toll. And I know you were also diagnosed with lupus a few years ago, so it’s like you’re managing your own condition plus caregiving. Can you talk to us a little bit more about that journey and how you balanced it all?

Gaile Valcho  10:58

Yeah, I was diagnosed with lupus in February, of 2020, so right when the pandemic was sort of hitting the United States?

Zoe Rothblatt  11:07

Oh my gosh, yeah, so overwhelming.

Gaile Valcho  11:10

And, you know, but I had been sick, or getting sick, I’d say, the year or so before that. I just didn’t know what it was. And I was a marathon runner, and I was running like, three, sometimes four half marathons a year, and like I said, it was in that running group, right? So, something was happening to me, I just didn’t know what it was. But it was getting to the point of intensity that I knew it was serious, and I was really starting to, like, getting concerned about myself when I saw some major, major symptoms happening to me. So, within the span of that 2019, to 2020, went through, I don’t know how many doctor appointments in different places, finally got my diagnosis of lupus. It really had taken a toll on me, especially in the beginning few years of my lupus diagnosis, I was very, very ill, and probably went to the emergency room every couple of weeks. And you know, my husband and I were both obviously worried about, what does this mean? What is it going to mean for me down the line? Can this potentially get even worse? And Brady certainly wasn’t at that point, five years ago, understanding what was happening to his mother.

Zoe Rothblatt  12:22

Oh, right, yeah. Like, how did you even go about having those conversations?

Gaile Valcho  12:27

We didn’t really know in the beginning what was happening to me, until we got that definitive diagnosis. And I remember him being with me at the rheumatology office. And it was a snowstorm here, a crazy snowstorm, but before that, he would be at school, and the school would call me that Brady’s crying today, saying “My mom’s really sick. My mom’s really sick.” And I would just say, “Yeah, you know I hadn’t been feeling well, but I’m okay.” And that’s all I just trying to kept reassuring him, “Mom’s gonna be okay, and you know, Dad’s here,” and I just couldn’t parent the way I was parenting for obvious reasons. You know, there was days and even weeks sometimes that I just couldn’t get out of bed. And was going through major, major testing, and medications, injections, and all kinds of things at home.  He was just trying to understand what had happened to my mom, who, like, ran like five days a week, and was this, like, dynamic person volunteering on the PTA and fitness classes and all of this to this, this woman who was just like in bed and now can’t get up. And he certainly couldn’t be with me, like, to the level where he was playing with me and interacting with me, I just couldn’t do it at that point. So, it was a lot for him to manage, and we would see some behavioral backlash from that, because he just had a hard time understanding what was going on.

Zoe Rothblatt  13:57

Yeah, I mean, at some level, it’s hard for any family member to watch a loved one struggling, looking for answers, especially a kid who relies so much on their mom, like Brady relies on you, even more so than maybe other children rely on their parents. So yeah, I can imagine how hard that is for him, but it seems like now probably you two have gone to a point where you support each other. You had mentioned in the beginning of the episode that it’s the eighth year of the Acceptance Day, so I don’t wanna assume, but you seem to be feeling a little bit better than 2020, and are maybe back to some of the things that you love doing.

Gaile Valcho  14:35

Yes, luckily, I started on a monthly treatment at Duke. So, I go for treatments and infusions, which has been, you know, managing my lupus, not to say that I don’t have some really rough days; I do. And Brady, now that he’s 17, he has a better understanding of what mom goes through and some of the things that I just can’t do. So, maybe I’m not able to go to a place that we had our heart set on going on a weekend, but what I can do is kind of like snuggle in bed and watch our favorite TV show, and he’s okay with that, and he’s been really wonderful. A lot of times, my husband will be at work, and if I’m not feeling well, my husband will say, “Brady, take care of mom.” “Okay, Mom, are you okay? Do you need anything? Oh, I wish she’d feel better.”

Zoe Rothblatt  15:22

Yeah, that’s so sweet.

Gaile Valcho  15:23

He really is. And so, he’s gotten to a better understanding of me. And we also use The Spoon Theory a lot in our house.

Zoe Rothblatt  15:32

Oh yes, I love The Spoon Theory, if you want to explain it for our listeners that don’t know.

Gaile Valcho  15:38

So, The Spoon Theory is something that I read about when I first got diagnosed, and it was a way that I used to explain it to some close girlfriends about where I was that particular day, or where my energy was. And I certainly used to use it with Brady when he was younger. So, essentially, you wake up and you have 12 spoons in a day, and so maybe doing a household task might take two or three spoons, and taking a walk might use two more spoons, and dropping your kids at school may use three more spoons. So, you have to sort of manage your day by the amount of these 12 spoons. And I’ll just say to him, “No, mom’s out of spoons right now, and I just can’t go to whatever with you right now.” So, he understands now, and Brady is such an analytical thinker. So, that puts it in a perfect context for him, like I could see the 12 spoons; she’s minus the six; she’s got six more. So, he gets a really good feeling for where I am then, when I use that kind of analogy.

Zoe Rothblatt  16:41

It’s true. Because, I mean, of course, you know, when you really look and know someone, there are signs that there’s pain and suffering, but for the most part, lupus can be an invisible illness, so it’s really up to you to advocate for yourself and say something like, “I don’t feel well today.” And like you’re saying I don’t have enough spoons, because sometimes we just don’t know how to tell people that we need this support, and we’re not getting it because it’s not so obvious. So, it’s really important to adapt and talk about what you’re going through, instead of trying to keep disguising it and going through our day.

Gaile Valcho  17:17

Exactly! Especially, like you had said, lupus is kind of like that, quote, unquote, “invisible chronic illness,” where on the surface I may look okay, but inside I’m not feeling 100% and it’s hard for people to, like, kind of reconcile that when they’re just like, looking at you surface level. So, I love The Spoon Theory, and I use it quite often.

Zoe Rothblatt  17:38

Awesome. Well, Gaile, I wanted to end the interview with when I noticed you sent over your bio, your favorite quote was from Ruth Bader Ginsburg, which is, “Fight for the things you care about, but do it in a way that will lead others to join you.” And I just wanted to ask, how has this quote guided you, and why is it so important to you?

Gaile Valcho  17:58

Well, you know, she’s like a particular hero of mine, and that quote, she has so many, but that one stands out to me as kind of like a little mantra of mine. Because yes, autism is something that I’m particularly passionate about, but I understand that others maybe not so much. So, the point of it is, is that to stand strong in your convictions, but not to be constantly on a platform where that’s all you’re doing is talking about that one subject, or just talking about how it affects you and your family. I would not be doing myself a good service, nor the autism community on a whole, if I only sought to seek resources just for the benefit of my child. I’m looking at it as a broad, more of an overarching viewpoint to where this benefits my child, but it’s also going to benefit your child and other children, who may or may not have autism, but maybe they have something else, and they can still benefit from the resources and the advocacy that I’m trying to put forward. So, I try not to beat people over the head with what I’m passionate about. That tends to inspire people a little bit more.

Zoe Rothblatt  19:14

Yeah, definitely. Gaile, thank you for all you do. I’m so inspired by you. I really feel like we need more people like you out there, and I know we only just met, but I can really feel from the bottom of my heart that you’re such a great mom to Brady, and it’s just really lovely hearing about you talk to him, and you’re smiling this whole interview, and just talking about like the beautiful life that you’ve built together as a family and community is really, really inspiring.

Gaile Valcho  19:42

Oh, thank you. That’s so nice to hear. That’s my best compliment. *laughter

Zoe Rothblatt  19:46

Of course. And you know, lastly, where can our listeners find out more about you and your foundation and the Awareness Day?

Gaile Valcho  19:53

So, we have a website. It’s www.BVA.foundation  They can find all the information about the next event, how to donate to help us continue our work in the autism community, our work with law enforcement, and the free trainings that we provide to first responders and our story is on there too, and everything that they needed to know about the work that we’re doing here in North Carolina.

Zoe Rothblatt  20:21

Awesome. Well, thank you so much for joining us today, Gaile!

Gaile Valcho  20:25

Thank you so much for having me. It was a pleasure.

Steven Newmark  20:27

Wow. Zoe, well, that was another great interview. I noticed, as she mentioned, that she also has lupus, and that’s subject of one of our other podcasts that we’re launching called Clinical Trial Talks.

Zoe Rothblatt  20:38

Absolutely, yeah! And if you’re living with lupus or a caregiver to someone with lupus, I definitely encourage you to check that out, and we’ll drop a link in the show notes to our Lupus Help Center.

Steven Newmark  20:48

Well, thanks again for that great interview, and I have some bittersweet news. Unfortunately, this will be our last show with Zoe. Zoe and I started this podcast several years ago. We will continue the podcast, but Zoe is moving on to greener pastures, as they say, and I dare say, as much as I am going to enjoy continuing on with the podcast, it will not be the same without you, Zoe. Thank you for everything over these past few years, you’ve been such a joy to work with, and we’ll talk more offline.

Zoe Rothblatt  21:14

Thanks, Steven, yeah. I mean, now I can officially say, like we’re podcasters – We did it! We’ve had a podcast for a few years. It’s been awesome working with you and hear your perspective on these issues while bringing in the patient voice. I really admire how you balance the two of like the lawyer side of you to the patient advocate side of you. And listeners, I’ll always be a health advocate at heart and Steven, I’m excited to tune in and see where you take the podcast next.

Steven Newmark  21:41

Yeah, well, hopefully we’ll have you back as a guest someday, right, Zoe?

Zoe Rothblatt  21:44

Yeah, that would be cool.

Steven Newmark  21:45

Your expertise as a true health policy professional and greater health advocate than you could ever imagined.

Zoe Rothblatt  21:52

Yeah, I’m always around for this group.

Steven Newmark  21:54

All right, excellent. Well, we’ll see you soon. Let’s say it like that.

Zoe Rothblatt  21:58

And listeners, for the last time, thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.”  If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  22:12

I’m Steven Newmark. We’ll see you next time.

Narrator  22:18

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help You Make Sense of it All.”  I’m your host, Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation. Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. Well, it’s been quite a week, quite a month, quite some times in the health care advocacy world, in the health policy world generally, and, generally, for our country. So, the number one word, I think, if you were to do a Google search in the past week, two weeks, has been the word ‘tariffs’. Tariffs are everywhere – You probably read about them every hour, even if you’re not trying to. At least I do, and I’m not even trying to at this point. But, put succinctly, our country enacted a lot of tariffs. I’m actually not even gonna attempt to get into the specifics of what happened and what was rescinded, because there have been so many and it’s difficult to keep up. And I am going to necessarily fumble and not get it all accurate. Not to mention, by the time we finished recording this episode, things may have changed, and I’m not exaggerating when I say that, that’s how fast things are moving.  But in a nutshell, we had tariffs imposed on nearly every country in the world, nearly every country that we do trade with. We imposed large tariffs last week. Those tariffs were essentially rescinded towards the end of the week, with the exception of a 10% tariff across the board on all nations, as well as a very large tariff on China by the end of last week. We’re recording this on Monday, April 14, just to level set. So, by the end of last week, we had a large tariff imposed on China. At one point it was 84%, then it went up to 104%, and again, I should not get into the details, because I’m going to get I’m going to get some wrong, but the point is, we essentially got to the point where we’re in a full fledged trade war with China, if not close to an embargo of China versus the United States. At one point, President Trump announced an exemption for trade dealing with the electronics and phone devices. As most folks are aware, a lot of electronics, including on nearly every phone that’s used in the United States is manufactured in China. You know, imposing a 104% tariff would really raise the price on what I, personally, consider not to be very cheap products to begin with.  So, that would cause some disruption for folks needing phones, which is, basically, every adult human being and beyond in the United States. So there was a carve out. And then on Sunday, President Trump sent out a tweet saying that there is no carve out, that they’re part of a different set of tariffs, something having to deal with superconductors. It’s very convoluted, but it’s a long winded way of saying we are now in a full fledged trade war with China. The rest of the world, as I mentioned, we put a 90 day pause, I didn’t mention the 90 day pause, we put a 90 day pause on tariffs elsewhere, but at the end of those 90 days, we don’t know what’s going to happen. Number one. Number two, we don’t know if the President is going to change his mind before those 90 days and impose additional tariffs on those countries.  It’s very shocking to the system to say the least. Quite frankly, it’s not really the way we’re used to doing things in a democracy. Tariffs are generally set in our nation by the legislative branch, that’s not what happened here; they’re being set by the president with the approval of the legislative branch, but the President keeps moving and changing tariffs, which is causing consternation, to say the least, for a lot of folks who like to buy things, which is pretty much all of us, as well as a lot of folks who have money invested in the stock market, which is a lot of folks. So, that’s where we are.  And how does this relate to health care, and health needs, and health policies? Well, we do import a lot of goods. We import medical devices and a lot of pharmaceutical products. A lot of our drugs are imported from other jurisdictions, of course, including most notably China. Now, President Trump has said that pharmaceutical products are currently exempt from his tariff plan, but that they, quote, “are coming soon.” Tariffs are coming soon to pharmaceutical products. So, obviously, for anyone listening who takes a pharmaceutical product, which, again, is mostly every American, I know, I go to CVS quite often just to collect my Tylenol or Advil or whatever the heck else I need, or stomach medication, if it is produced overseas, these are going to get hit with tariffs at some point in the future, and we will have to see the specifics and the particular drug product that you use. The same goes for medical devices. If you are a user of medical devices, even simple ones, such as crutches, perhaps that are manufactured overseas, the tariff could certainly impact you.  So, just to recap, tariffs on medical devices and other products for consumers could push up prices for health care providers that, potentially, impact the availability of essential equipment and supplies. This means that your local health care provider may have less supplies to go around if you’re visiting in person to see a supplier. It could mean that your employer, whom you get your insurance through, or your insurance carrier, may decide not to cover certain medications, or may raise rates in response to these tariff costs. So, that’s how it could certainly directly impact patients, but indirectly the impact on all Americans, but patients in particular, if you start to feel a struggle financially in one side of your ledger, if you will, that could have an impact on how you proceed with medications. If you’re struggling financially, if there are pressures at your job, if you, unfortunately, lose your job due to some of these issues in the marketplace, that could necessarily have an impact on your mental health, which, of course, can translate into an impact on your physical health as well. So, look, these are things that we will continue to look into.  I, actually, am doing my best not to read the word tariff in my own personal life. However, it seems as though I can’t pick up my phone without seeing the word strewn about somewhere. So, we’re all living in this world, as I said, it’s not the world we were living in a few months ago, but here we are, and we’ll see how it impacts patients and what you can do in terms of it. I joked to some friends, you know, it’s time to stock up on iPhones now, before the prices really jump. Fortunately, I wasn’t the only one who made that joke, or less joke, because it turns out that the prices have skyrocketed already in anticipation. So anyway, I have no other advice. I’m not an economist, and I’ll leave it there, so we will try to our best to navigate these tariffs together.  Moving on other news this week, so we’ve talked a lot about some of these cuts that have been implemented by the Trump administration across government and through Elon Musk and his DOGE office. So, one I just wanted to highlight this week, they have essentially eliminated a pain research office that was part of the National Institutes of Health. They actually fired everyone, except for one individual, who I suspect will be repurposed elsewhere. It’s called the National Institute of Health, their Office of Pain Policy and Planning, and this was eliminated just last week, and this was a unit which was devoted to coordinating pain related research across the federal government. Advocates, such as us at GHLF, we worry that crucial products related both to acute and chronic pain could essentially come to a halt. The office was housed within the National Institute of Neurological Disorders and Stroke, and its work intersected with that of numerous other NIH institutes and federal agencies. So, that is a real world example of something that patients look to, patients that deal with pain, which are many folks that we know who deal with pain regularly, and an office whose essential job was to look into pain, and policy, and planning, and help try and create a society that would be better geared towards helping folks navigate life with pain has now been eliminated as a result of some of these cuts. And then later, he actually posted again on acts, this time to promote what I will charitably call unorthodox, unproven treatments for measles, and I’ll get into that in a moment. Then later in the week, on Thursday, RFK espoused the idea that respiratory vaccines targeting only one portion of a pathogen don’t work. He made this claim in an interview with CBS News, and when pressed on why political appointees at the FDA delayed granting full approval to Novavax’s COVID vaccine, he used it as an opportunity to essentially say that these vaccines targeting only one portion of the pathogen don’t work, essentially. And just as a reminder, the original COVID-19 shots targeted a single protein, and they proved to be highly effective in the use against COVID.  And that’s just a real world example to pay attention to. Moving on, it’s yet another week where our HHS Secretary was in the news for vaccines. He actually started out last week speaking positively about vaccines in light of even more cases of measles, including a second death in Texas, an otherwise healthy child who was unvaccinated for the measles. The Secretary of Health and Human Services, Robert F. Kennedy Jr., said last Sunday that I will quote, “the most effective way to prevent the spread of measles is the MMR vaccine.” He posted that on X and that was his most direct statement yet on the issue of vaccines, and with specificity to measles. He did stop short of recommending vaccinations. He just said that it’s the most effective way to prevent the spread of measles.  The same is true for a new class of vaccines that is targeted against RSV. But of course, this could have significant implications for the development of new vaccines when the big boss at HHS is espousing such things. He also, as I mentioned previously, he promoted the idea of unorthodox treatments, and those treatments, specifically from measles, he mentioned cod liver oil and vitamin A – these are unproven. In fact, I did a pretty healthy search, no pun intended, and I could not come across one peer reviewed study looking at vitamin A or cod liver oil, and its effects on measles patients. So, the idea that one should consider using cod liver oil in lieu of taking vaccines is unfounded, to say the least.  And I just want to take a personal moment to say the idea of promoting such things is dangerous. I have friends and family members who will say, “well, what’s the harm? What’s the harm? What’s the harm in just having a little cod liver oil, or what’s the harm in having vitamin A?” And then the harm is simply this, number one, you’re putting something into your body, and you don’t know its effects, and you’re oftentimes, when you do that, you’re not informing your medical provider, you’re not informing your doctor. And there could be interactions that taking higher doses of vitamin A, or cod liver oil, and with other medications that you’re on.  Another obvious issue is, if you’re taking these medications in lieu of taking medications that work, then you’re putting yourself at risk for obtaining the disease, and also not eradicating the disease from your body, and thus spreading the disease. If I were to say, for the common cold, I have or for a flu, the cure would be to hop on one leg for 10 seconds and then that could help cure the flu. Is there a harm to doing that? Well, I guess technically, in that situation, no, there’s no harm, per se, but if you think that doing that is curing you, and then you go out into the world thinking that you were cured, you’re then spreading your illness to others. So, there is an unintended harm that you may not be thinking of with some of these supplements. Also, when it comes to supplements and vitamins, it should be noted that they are not regulated with the same rigor that medications are.  And by that I mean, specifically, the actual products that you’re buying from the rigor and testing that what you’re buying actually contains the product that it says that it contains inside the bottle is not tested to the same rigor that actual medications are held to, not to mention in terms of their safety and efficacy for both short term and long term use, are not tested the way the FDA tests other products. So, those are things that you should keep in mind. And just as an aside, a lot of the vitamin products are found naturally in foods, and if you are obtaining more than enough vitamins from the food that you eat, adding additional vitamins may prove to be harmful in some instances or may not, but certainly may prove to be unnecessary, if nothing else. So, those are just some things to keep in mind. And with that, I want to say before we end, if you’re interested in hearing more about how the FDA works and some of these cutbacks might mean to the FDA, not to mention what we were talking about in terms of using unfounded medicine. Definitely check out the latest episode of our sister podcast “Healthcare Matters,” where it was a great interview with Peter Pitts, former Assistant Commissioner of the FDA, and he dives a lot deeper into some of these issues, so I definitely recommend that.  So, with that, thanks for joining us here on “The Health Advocates.” It’s always a pleasure to talk about what’s going on, even though the subject matter is not always pleasant, unfortunately. It’s great talking to you all, and we love hearing from you. And last before we go, we have some big news for lupus patients: This week, we launched our lupus Help Center here at GHLF, you can find that at lupushelpcenter.org That’s lupushelpcenter.org And there’s great resources for lupus patients to find information on your disease journey and living your best life with lupus. Stay tuned for more information, and we’ll continue to pass it along. Well, everyone, thanks for listening to the “Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help You Make Sense of it All.” If you liked this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Steven Newmark. We’ll see you next time.

Narrator  12:55

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week to Help You Make Sense of it All.” I’m your host, Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation. Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. And well, this week, it’s been quite a doozy in the health care world. There’s a lot to discuss and how it relates to public health policy and what it might mean specifically for our community, the chronically ill patients and those dealing with various other ailments, and what it might need. So, let’s get into it.  Last Thursday, HHS Secretary, Robert Kennedy (RFK), announced that they would be laying off 10,000 staffers at Health and Human Services, the Food and Drug Administration will be the hardest hit, accounting for about 35% of that total, followed by the Centers for Disease Control and Prevention, the CDC, some might recall that RFK is perhaps making good on a promise he made last fall before the election, when he told the FDA workers that they should plan to, “pack their bags.” Well, I guess now is the time to start packing for some of these folks. Now, that being said, even though HHS will be operating with about three quarters of the people it had before Trump took office, RFK has pledged in a video message that the cuts won’t affect crucial services that HHS oversees, like reviewing drugs before they hit the market and responding to disease outbreaks. However, a lot of former HHS leaders dispute that, and when you cut 25% of your workforce just viscerally, it sounds like it would be difficult to maintain the same level of care, but we shall see. Robert Califf, who led the FDA during the Obama and Biden administrations, has said that his former colleagues at HHS are, quote, demoralized. He said, I’ve never seen a group of hard working people treated so disrespectfully in the workplace. And I have to say, from a distance, on the outside, looking in, I understand what he is saying and what folks might be feeling, both those who have been let go from HHS and those who have not been let go but are still there. So, we should see.  The former Chief of the Centers for Medicare and Medicaid Services, Chiquita Brooks-LaSure, who led the agency under the Biden administration, spoke to reporters on Friday. She spoke about some specific areas that she has concerns with. She focused in on nursing home inspections, she said that that is an area that has always been significantly underfunded, and she fears it might get worse with these cuts, of course. She said, I’ll use her exact quote, “People are just not appreciating the devastating changes at HHS that have come down the pike this past week with the HHS workforce, it’s crucial that the people are able to get the care that they need.” So, that’s what’s going on at Health and Human Services, the organization at large, in one of its sub agencies, the FDA, last Friday, Peter Marks resigned from his post as the FDA’s top vaccine regulator, after he was told by Trump administration officials that it was either resign or be fired. He chose to resign. Public health experts and former FDA commissioners have been speaking out and are alarmed by Mr. Marks’ ouster. What it pretends about containing infectious disease, given that Robert F Kennedy’s anti vaccine agenda. As part of his resignation, Mr. Marks, on Friday night, spoke of concerns with the leadership at the FDA and with HHS generally, and their views on vaccines and their skepticism and what it might portend going forward. And he specifically, noted some fear with relate in terms of as infections start to rise, particularly in view of what is happening with the measles outbreak in parts of this country. He specifically said it is unconscionable with the measles outbreaks across the United States to not have a full-throated endorsement of measles vaccinations.  Speaking of measles, the outbreak in Texas and elsewhere around the country is getting worse. Officials said that they had identified 400 cases as of last Friday, primarily in the western part of the state. That represents a 20% jump from the cases just a few days prior, outbreaks are also growing in New Mexico, which now has 44 cases; Kansas, which has 23 cases; as of Friday, Oklahoma, nine cases; and Ohio, 10 cases. So, we’re talking at close to 500 cases, if not more than 500 cases, and this is all coming amongst as the alarm grows among public health experts over what HHS Secretary RFK’s response has been to the outbreak, including his suggestion that things like vitamin A and cod liver oil could be effective treatments for measles. Spoiler alert, they’re not (!). And on top of that, these cuts that we have been describing at HHS have impacted people, who track the spread of measles and other infectious diseases, as well as cancel grants that include research on vaccine hesitancy.  That being said, as the measles outbreak continues to grow, there has been a growing increase of folks, who had previously been anti vaccine or vaccine skeptical. Particularly, in these areas where the outbreak has grown, they become very pro vaccine, let’s say they, they’re starting to rush to out to get vaccines, which I guess is a good thing in some respects. And as we have said multiple times on this podcast, the best way to protect yourself, when it comes to measles or any of these other infectious diseases, that have been nearly eradicated, and heavy emphasis on the word nearly the best way to protect yourself, of course, is to get yourself vaccinated. And for diseases such as measles, it’s really making sure that children that you are around are vaccinated with the MMR vaccine.  So, that’s where we are. Fun times…to say the least…lots of cuts at HHS, the departure of a chief vaccine authority at the FDA, and growing measles – I know that’s not fun stuff. It’s a tough time in public health, as we have talked about on the podcast previously. But we’re going to stay on top of everything, as we always do here at “The Health Advocates,” and we will continue to advocate on behalf of all patients, and on behalf of the idea of trusting science, and making sure that we continue to expand the profile of our patients, and continue to expand the idea that public health is a good thing for the public at large, and that’s really all there is to say on that.  Well, everyone, thanks for listening to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you liked this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Steven Newmark and we’ll see you next time.

Narrator  06:25

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.

Zoe Rothblatt  00:18

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:22

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:28

And today, we’re gonna break down some of the latest health care news, especially the federal level. Steven, if you wanna kick us off?

Steven Newmark  00:35

Yeah, it’s hard to keep up with what’s happening in Washington and then, particularly, what’s happening from the White House; things move very fast. It’s almost impossible to discuss everything that’s happening, but we’ll do our best to cherry pick a few topics and see what’s happening down there.  Let’s start, this just came up a couple of days ago. The Trump administration has canceled funding for a 30 year nationwide study that’s tracking patients with pre-diabetes and diabetes. This move is coming despite calls to tackle chronic conditions under Robert Kennedy’s Health and Human Services direction.

Zoe Rothblatt  01:09

Yeah, so this is upsetting to see. Obviously, it’s tracking patients with pre-diabetes and diabetes. That’s a large portion of people we know diabetes rely on, you know, regular access to medication, and like this research helps contribute to that, I would imagine, so to see funding canceled for a 30 year program like, has to give you pause to think, like, how is that going towards, like, a healthy agenda?

Steven Newmark  01:33

Yeah, it got swept up in some cancelations of other items, and there’s a lot of break things first and figure it out later. I would suspect that this was not something that was targeted per se, but as you can imagine, a 30 year study is tough to replicate – It’s not something you can just put back together pretty easily, but here we are. That’s one of the many things that’s happening. Another thing that’s happening around the country, we should mention, just in terms of public health, is measles, measles, measles, measles. There have been over 300 measles cases reported so far. That’s more than the annual total of 12 of the past 15 years, and it’s still only March, so the most notable cases are taking place in Texas and New Mexico, and cases are continuing to rise. We don’t know the actual numbers; there are a lot of thoughts that the true numbers might be much higher, but it’s continuing to spread around the country. And while these numbers do sound low, a few 100, we’re talking about a disease that was, essentially, eradicated not too long ago. So, the idea that a lot of folks are not getting vaccinated is what is contributing to the, unnecessary, I would call it outbreaks around the country.

Zoe Rothblatt  02:36

Yeah, we’ve gotten emails from people in our community about these measles outbreaks and once previously, like it’s been happening over the past couple of years, and obviously, like you’re saying, it’s getting more concerning, with just over 300 cases now, and people not getting vaccinated. To the people in our community that are reaching out to us, we’d always recommend talking to your doctor, and checking out your vaccination status with your doctor. But if you’re up to date on vaccines, you’re pretty well-protected.

Steven Newmark  03:03

That’s absolutely right. If you’re up to date on vaccines, you’re well-protected. And to the extent you are having conversations with others in your community, you might have questions about getting vaccines, not to lay it on too thick, but you know, letting folks know the safety and efficacy of the measles vaccine is certainly, that’s certainly news that’s worth of spreading, not to mention, what it’s like to live with a chronic condition, and the increased fear that comes should more communicable diseases become the norm again in this country.

Zoe Rothblatt  03:28

And if you do live with a chronic illness and are worried, and you know, have travel plans coming up, like definitely, just stay up to date on where there’s an increase in cases, and hopefully you can try to avoid those areas for the time being.

Steven Newmark  03:40

Lastly, as it relates to measles, former CDC director Rochelle Walensky, actually argued that we should increase the national recommendations for the measles, mumps and rubella vaccine, the MMR vaccine. It currently includes two is the standard for infant 6-11 months, and Dr. Walensky argues that it should include a third dose for folks, who are traveling to any region with a higher probability of measles exposure.

Zoe Rothblatt  04:03

Is that just for that same age group, 6-11 months that recommendation?

Steven Newmark  04:07

Correct. Yeah, just for that same age group, yeah, yeah. But because those are the most vulnerable.

Zoe Rothblatt  04:11

So, unless we have any 6-11 month old listeners, or, I guess, parents of 6-11 month olds, yeah.

Steven Newmark  04:19

Exactly. Yeah, parents. In fact, when we talk about the measles vaccine, we’re directing public health in this sphere. You know, when I say “we,” I’m talking about you and me, Zoe, but we’re really, probably, directing more towards folks, who have children, have small children. Adults, almost assuredly, were given their MMR vaccines at the appropriate stages of development, whereas now there are a lot more folks electing to opt out for their children.

Zoe Rothblatt  04:42

And that’s where we continue to see a lot of these outbreaks, and like, school age children.

Steven Newmark  04:46

Yeah, moving on. Dr. Oz, famous from TV and to a lesser extent, as an actual medical provider, was on Capitol Hill, he is President Trump’s choice to lead the Centers for Medicare and Medicaid Services, and otherwise known as CMS. He was on, as I said, Capitol Hill last week. He, interestingly, he pledged a crackdown on Medicare Advantage plans, even though when he ran his television show, he was a proponent of Medicare Advantage plans, but times change and administrations change, and when you want a job, you want a job, I guess.

Zoe Rothblatt  05:16

Yeah, hasn’t he always wanted to, like, privatize Medicare, which is like more towards how Medicare Advantage works?

Steven Newmark  05:22

Yes, which is right, akin to Medicare Advantage. Yeah, but when you’re on Capitol Hill, you know, you say what you got to say, like, yeah, I don know, we’ll see what happens.

Zoe Rothblatt  05:30

And he also seemed open to reducing Medicaid spending. So, yeah, I guess we’ll see what happens there. But obviously that’s concerning to us, like as health advocates, we always want patients to have more access to insurance, especially Medicaid, where it’s low income and disabled people.

Steven Newmark  05:48

Right. And speaking of Medicaid and cuts, as Republicans look to extend the Trump tax cuts from the first administration, they have to find corresponding offsets in spending, and most notable way that they are likely to find corresponding cuts is through Medicaid. All the stuff that Elon Musk is doing, etc, is really just not even a drop in the bucket. It’s like a drop in the ocean, to say the least, in terms of cutting budgets to find the real meat, if to continue on with the tax cuts, the likely cuts are going to go, looks like they’re going to go, towards Medicare or Medicaid in some capacity, at least, that’ll be the target. We’ll see what happens when that works its way through with the legislative process.

Zoe Rothblatt  06:26

And how long does a process like that typically take? Do you know, like, would those cuts happen this year, or is that over, like, a few years of this administration we’d see that?

Steven Newmark  06:35

It depends. First, they have to get a bill, in which to pass. And the timeline for that, I think, is targeting probably late summer, which really means it’s going to be sometime in the fall, for legislation. And you know, we’ll see what the pushback is. I think that there are a lot of folks who supported Republican members of Congress, Republican senators, and President Trump, who are not going to want to see Medicaid funding cut. So, if Medicaid funding is the offset that is being sought, it’s going to be difficult. There’s really no other line item that is comparable to Medicare, Medicaid, the others might be Social Security. And the only other one that’s even in the ballpark, but really not is defense spending. And defense spending is not it also means jobs, specifically, because defense spending is often code for the procurement of weapons that are built in the United States and are big job producers. So, the likelihood of defense spending is even more remote than Medicaid, although Medicaid is in some respects a job producer as well, because there are health care providers in every jurisdiction, of course, and you know, Medicaid helps support those. So, we’ll see how that goes; we don’t know.

Zoe Rothblatt  07:42

I feel like so often, we’re like, “we’ll see where it goes.” But that’s like, the world of health policy, right?

Steven Newmark  07:47

Well, yeah, that’s the world of all policy. You know, there’s so much happening so fast that by the time you get to the tax cut extension, which is where the commensurate Medicaid cuts are likely to be, it’ll be, you’re talking like, a few months down the road, and a few months down the road, and particularly, with this administration, is like several lifetimes to say the least. So, we’ll see, we’ll see. We’ll keep an eye on it, and as it impacts patients, we’ll certainly update folks, and we may even be advocating on behalf of patients in some respects, when it comes to some pieces of legislation.

Zoe Rothblatt  08:16

Definitely. And listeners, if you’re interested in getting involved, we’ll drop a link in our show notes about the 50-State-Network. You can always feel free to email us and join to share your story around advocacy issues like these.

Steven Newmark  08:28

Definitely, and I just want to mention one more little piece of news: there’s a little known health and human services agency that’s facing big layoffs. It’s AHRQ called AHRQ, it’s a smaller, less well known agency within HHS, and it’s the only agency that researches what patients get from health care, and how to improve care. The agency has also been keen getting insurers to cover free preventive services, such as mammograms. The reason I want to mention that because of its direct impact on patients, it’s as of now, it’s being swept up in the mass layoffs being led by Elon Musk and his DOGE crew. Then, I think there’s certainly an impact to be felt for patients with these layoffs, specifically.

Zoe Rothblatt  09:09

Definitely, especially, you know, if RFK Jr. wants to reduce chronic disease, this is, seems to be a group that’s helping achieve that goal, right? By improving care and covering of preventive services, so it kind of just feels like it maybe goes against that or delays that mission.

Steven Newmark  09:27

Yeah, no, absolutely. One prime example is, AHRQ is researching how ultra-processed foods contribute to childhood obesity, and how that might lead to chronic illness, and they’re helping to identify a link between areas saturated with unhealthy food options, and higher hospitalization rates for causes related to diabetes. If you take away research like that, if you take away the ability to conduct such research, you’re not going to have these findings, you’re not going to be able to take such findings, and try to influence policies such as increasing reimbursement for preventive services and so forth.

Zoe Rothblatt  09:59

Yeah, well, Steven, thanks for breaking down the news with me, while it wasn’t like the most hopeful news this week, it’s important to talk about and like continue to advocate on behalf of patients.

Steven Newmark  10:11

All right, let’s end on a positive note, it’s mid March, it’s almost the end of March, and flu rates are going way down in the United States, so I’ll give you something positive, and COVID is still very, very low in the United States. Is that a good one?

Zoe Rothblatt  10:22

Yeah, round of applause for that. That’s good to hear.

Steven Newmark  10:25

Okay, excellent, excellent. So, take the good, you take the bad, I guess. Before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  10:36

Well, everyone, thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.”  If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  10:49

I’m Steven Newmark. We’ll see you next time.

Narrator  10:55

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:06

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation. And I’m Zoe Rothblatt, Director of Community Outreach at GHLF. Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. Today, we have a special guest: he’s a state senator and also a pharmacist by training, actually a third generation – Senator Reeves of Tennessee. He’s a seventh generation Tennessean that earned his undergraduate degree from Middle Tennessee State University and a Doctor of Pharmacy from the University of Tennessee. In 2018, Senator Reeves was elected as a state senator for the 14th district. So, with that, let’s hear from Senator Reeves.

Zoe Rothblatt  00:52

Yeah, this is pretty cool. I’m excited to hear from Senator Reeves and his impact on patients in the larger community.

Steven Newmark  00:58

Yeah, let’s get into it.  Well. Thank you, Senator Reeves, and thank you for joining us here today. Welcome to the show.

Sen. Shane Reeves  01:04

Glad to be here. Very much appreciate the opportunity to be with you, Steven.

Steven Newmark  01:07

Excellent! Well, let’s start with what led you to public service; you went from the pharmacy counter to the State House. So, how did that happen?

Sen. Shane Reeves  01:14

Couple of things happened in my life early on. Number one, my father’s a pharmacist, and my father was also in public service. He was a mayor of my small town growing up, so I grew up with an individual that was in public office that I could already could see the difference you can make in the public service. So, I had a little bit of the Public Service itch whenever I graduated pharmacy school, and then along the way, as I got to be older, a couple things happen. One is I just continue to fall more and more in love with my state. They wanted to give back in some way, but probably the biggest reason, ultimately, had to do with my love for pharmacy, my love for patient care, and my desire to really want to try to make a difference in the state senate, because there just weren’t that many people, who have a background in health care in the Senate.

Steven Newmark  01:57

Yeah, that actually, it is unusual to find a pharmacist in elected office. I mean, we know of several members of Congress. How many pharmacists are you aware of, personally, in elected office? Are there any other in Tennessee?

Sen. Shane Reeves  02:07

Funny, you say that because Tennessee, I can’t speak across the country, but Tennessee is pharmacist heavy in the Senate. Believe, believe it or not, our lieutenant governor, there’s 33 senators in Tennessee. We have 95 counties, 7 million people, 33 senators, our lieutenant governor, top person, he’s an old hospital pharmacist. He’s a top guy. Our speaker, pro tem, the number two person is a pharmacist. Both these guys are retired. They’ve been out for years, but they both just happen to be pharmacists. And then there’s me. So, of our 33, 10% of the entire Senate are pharmacists. Now, don’t get me wrong, the two guys that, I’m not retired, I’m like, mid 50s, so I’m still working, but these guys are also pharmacists, so it’s been good, and we’ve got a pretty loud voice together.

Steven Newmark  02:50

Wow. Well, that’s great to hear. I mean, it’s really helpful from our perspective as patients to have folks, who understand the industry, and understand the importance of medications, and being on the right therapies. Let’s turn to a little policy matters: from your personal experience and perspective as a pharmacist, what role do pharmacy benefit managers play in the health care space from your side of the stakeholder table?

Sen. Shane Reeves  03:10

As a senator or as a pharmacist?

Steven Newmark  03:12

Let’s use as a pharmacist, first and foremost, you consider yourself a pharmacist before a senator, right?

Sen. Shane Reeves  03:17

I’m a clinician at heart. I really deeply am, I care about patients, specifically patients with chronic conditions. That’s my whole life has kind of been built around taking care of those folks. So, as a pharmacist, I think when PBMs are first introduced decades ago, they had a real vital function. They came to the table; they helped control costs; they put formulas in place. And early on in my career, they made a lot of sense. But somewhere along the way, they decided to move from just being a gatekeeper to wanting to own the kingdom, and so, now they control what medications people take. They control what pharmacists get paid, how soon they get paid, whether they’re going to give authorization or not to things. Many times they’ll pay the pharmacist, and then a couple of months later, change their mind, and scrape that money back. So, they’ve really gotten away from trying to be a partner in the health care marketplace, and nowadays, most pharmacists, I know it’s a real adversarial relationship with PBMs, and that’s unfortunate. That’s just unfortunate. There’s three major PBMs in the country today: you’ve got Caremark, you got Optum, and you got Express Scripts, and they’ve got about 80% of the market share. I know a lot of people, who work for them, very good people, but they’ve really, in my opinion, gotten away from their original calling of trying to just be this intermediary taking care of patients that need pharmaceuticals, and they’ve gotten so profit minded that they’ve just run over the providers, who help build their business. So, and don’t get me wrong, they have provided a lot of value, and even to this date, they can provide value, but I don’t think as fondly of them as I did 25 years ago.

Steven Newmark  04:39

Right. No, I totally understand. It’s a little bit like the law of unintended consequences, but more so it’s the beast that has been created that has gone astray, a little bit.

Sen. Shane Reeves  04:49

It really has been. And so, as a senator, you can only imagine and being a patient advocate being down there’s a lot of the legislation I have carried has been directly focused on that things like, an example is an idea called Patient Steering, which is basically this, if the doctor writes an order to come to my pharmacy and the patient’s supposed to come there, the PBM should not jump in front of that order and steer it to their own pharmacy that they happen to own in Illinois. I mean, in Tennessee, really, truly, the patient has the right to choose where to get the prescription filled, and the doctor should have the right to send the prescription to whatever pharmacy he chooses. So, little things like that, I’ve tried to do on a PBM level along the way to help patients, help providers, help docs, help pharmacists. PBMs probably didn’t like me a whole lot before I ran for office…

Steven Newmark  05:31

Yeah…

Sen. Shane Reeves  05:32

…and now that I’ve run, they really don’t like me. *laughter

Steven Newmark  05:34

So, you’ve spoken publicly about your support of increased transparency in the health care space, especially, as it relates to PBMs. Can you talk about how this lack of transparency impacts pharmacists in Tennessee and, ultimately, impacts patients?

Sen. Shane Reeves  05:46

I mean, just imagine if you had to get in your car every day and you were gonna go get gas, but every single gas station you went to, they didn’t publish the rates, and you had five gas stations in a row. One of them was $3 a gallon and one was $50 a gallon, and you didn’t know until after you pumped it into your tank and actually went to pay for it. That would seem to be ridiculous. Are you going to go buy an airline ticket and you have no idea what you’re going to pay for, what it’s going to cost until you actually have to pay for it? I mean, health care is the only profession, really and truly, where people just don’t have insight into what they’re going to pay for things. And what that does, in turn, is it doesn’t create consumerism, where people can choose, and it doesn’t create a sense of competitiveness, where providers can all kind of compete with each other for the business. So, not having transparency in the PBM world, or in health care in general, really is holding back our entire health care system from moving forward. And by the way, this is probably more than your listeners want to know, there are other countries around the world that have dealt with this head on – Singapore is a good example. They’ve opened the floodgates in Singapore, as far as transparency, 100% of every single thing is shopped. If you’re gonna go see a doctor because you’ve got a cold, you know what it’s gonna cost. If your wife’s gonna have a baby, you know what it’s gonna cost. And you can shop it. You can say, you know, I don’t think I want to have a $20,000 baby at the top floor of the hospital. I, actually, want to have this baby here that’s $5,000 at my house, but, but one of the reasons that’s the case is people in Singapore are paying for it themselves, or health insurance is a lot of their own dollars, the way they do it. So, they really care about cost, they care about quality, and they absolutely care about transparency.

Steven Newmark  07:18

It’s interesting. I used to work at a hospital, and the CEO used to use a similar analogy, you would say, would be like going to buy a television, and you go into the store, there’s no prices listed, and how are you supposed to choose? And you go to check out, and they just charge you whatever it is.

Sen. Shane Reeves  07:31

Now, our health care system is fragmented enough as it is, and it’s expensive enough, and it’s a day between acute care and a post acute care, and so many players that are out there, it’s just the fact that we don’t have a true capitalistic transparency system for people to be able to shop health care is impacting cost and quality and transparency, not to mention just people having faith in the health care system because of all of that.

Steven Newmark  07:51

Yeah, no, absolutely, absolutely. Actually, I want to ask about that, but before we do, let me just one more question on PBMs and pharmacies, specifically, what impact do they have on independent pharmacies, and what steps can be taken to support independent pharmacies, to ensure for fair reimbursement rates?

Sen. Shane Reeves  08:06

They’ve crushed independent pharmacies. There’s nobody out there listening right this minute that I can say today, that would tell me there’s a whole lot more independence today than there was 10 years ago. PBMs have crushed that profession; they’ve shrunk the margins so much; they’ve pushed people to mail order pharmacies; they push people to pharmacies they own, and they have steered patients away from the independent pharmacist of the world. Now, in Tennessee, one thing I did, and again, one of the pieces of legislation I passed had to do with trying to provide pharmacies in rural communities. So, real small little counties in Tennessee, they can now get a larger dispensing fee. My hope is they don’t have the benefit of a large volume because not many people live there, but they can now make a larger dispensing fee, because I’m just trying to keep them in business. But you know, back when my dad was practicing pharmacy in Tennessee, there was probably five times the number of independents that there are today, if not more. It’s just crushed the profession, and it’s an unfortunate thing, not just for pharmacists; it’s an unfortunate thing for patients and for Docs and dentists and other people, who depended on their local pharmacists to help them make good decisions.

Steven Newmark  09:05

Yeah, no, absolutely. And if I may say, thank you for doing what you do, not just on behalf of pharmacists, but on behalf of patients.

Sen. Shane Reeves  09:12

Because they are, ultimately, the one that pays the price. They’re the one that’s the lady, who’s got the child with hemophilia, and if she goes to our local pharmacy and they say, “No, you’ve got to get it through mail order,” and her child ends up in the emergency room with a bleeding disorder. I hear stories all the time about PBMs and interceding in patient care, and what it does is it blows up the health care model. It just ends up costing more money and it impacts patients lives, which is just wrong.

Steven Newmark  09:35

Yeah, no, absolutely. Let me just change topics for a moment. What can be done? Generally, we talk a lot on our program about the importance of medication adherence, particularly for the chronically ill community. How can pharmacists help play a more significant role in having patients adhere to their medication?

Sen. Shane Reeves  09:51

Years ago, when I was a younger pharmacist and I first got out of school, I had a speech. I would go around and I would give to people in my community college, “Have you hugged your pharmacist lately?” And I probably gave that to every YMCA, Rotary Club, church group. I mean, I gave it everywhere for a long period of times. And one of the big things I would focus on in that was the importance of, you know, medications that you don’t get filled, or medications that you don’t take, they don’t work.

Steven Newmark  10:18

Right! That’s, I’m stealing that. I’m going to steal that. Thank you. *laughter

Sen. Shane Reeves  10:21

You have to have them to have to work. And so, I would just one thing that pharmacists can do, I think, was your question is they need to be a better evangelist on the importance of people taking the right med on the right day at the right time, consistently, and getting the benefits. There are packaging systems nowadays. I’ve encouraged a lot of pharmacists, you know, there are packaging systems, matter of fact, I’ve got one over here that somebody just dropped off here. Here’s an example, of one, now your viewers can’t see that, but you can see that. Pharmacists can invest in packaging systems where people can get their morning meds in their midday mails, and their afternoon meds all packaged for people to make sure they’re taking the right thing. So, I would say it’s a combination of good education, and promotion, and also just developing systems for people to use. If it’s packaging, if it’s technology, whatever, because medications are expensive, and if you want to get better, you need to make sure you’re being adherent.

Steven Newmark  11:08

Yeah, absolutely. Well, that’s great advice, and I’m not kidding, I’m gonna steal that the medications you don’t take work 0% of the time. So, that’s a good one. We in the patient advocate community are very grateful for all the efforts that you’re doing in Tennessee. And you know, what happens in Tennessee reverberates elsewhere as well. So, we are so grateful for that. With that, if you have any last words of wisdom for our patient community?

Sen. Shane Reeves  11:30

Now, I would say to you, I appreciate what you’re doing. I appreciate you having a voice for so many people out there that have got chronic, complex, and rare diseases. You’ve got a big platform, and they need somebody out there beating the drum, trying to help them out. And something else I would recommend to your community, don’t just build a relationship with a local pharmacy; get to know a pharmacist. If you ask somebody what their pharmacist’s name is, their pharmacist’s name is not Walgreens. Their pharmacist has a name. Get to know the pharmacist, their first name, their last name, build a relationship, and let that pharmacist be part of your health care team, right along with your doc and other people that are helping you take care of. Because we’re all in this scene together to try to help people get good patient care. But thanks for the invite today.

Steven Newmark  12:09

Yeah, absolutely. Thank you, Senator. That’s really great advice, and we’ll pass that along for sure. Thank you.

Zoe Rothblatt  12:15

Well, Steven, that was awesome. It’s really great to hear from someone that’s not only an elected official, but also has a background in pharmacy and doing such important work to bring in that perspective into the legislative work that they do and help the community.

Steven Newmark  12:31

Absolutely, having a pharmacist in the State House is beneficial for patients. They understand what patients are going through when they are in need of medications, and that background is helpful for all of us. So, with that, we want to encourage everyone to check out all of our podcasts at ghf.org/listen

Zoe Rothblatt  12:47

Well, everyone, thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you like this episode, give us a rating, write a review, and hit that subscribe button. I’m Zoe Rothblatt.

Steven Newmark  12:59

I’m Steven Newmark. We’ll see you next time.

Narrator  13:05

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:18

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life. In this episode, Brindley Brooks, the founder and executive director of ‘HS Connect,’ shows her personal journey of living with Hidradenitis Suppurativa, otherwise known as HS. She’s been living with the disease since age 10, and she discusses the challenges and misconceptions surrounding HS, including a misdiagnosis and stigmatization that led to her avoiding seeking medical care for over a decade. Her experience motivated her to create “HS Connect,” a patient advocacy organization aimed at educating and supporting HS patients.

Zoe Rothblatt  00:57

Wow, it’s really exciting to have Brindley on. I’m excited to listen to your conversation, especially since our organization recently worked on the HS Guide to help patients make decisions about their care. I know Brindley was involved in that, and it’s great to hear about her personal journey, because so many people, like her, go through years of challenges.

Steven Newmark  01:18

Well, welcome Brindley, glad to have you with us. Why don’t you start by introducing yourself to our listeners?

Brindley Brooks  01:23

My name is Brindley Brooks. I’m the founder and executive director of HS Connect, which is a patient advocacy organization for Hidradenitis Suppurativa (HS), and we focus on factual education and awareness about HS. There are a lot of misconceptions about our disease. So, our goal is to advocate for our patients, educate our patients, and work on shared decision making with physicians, because there’s so little known about HS.

Steven Newmark  01:47

And what has your personal journey as an HS patient been like? And what have you learned along the way?

Brindley Brooks  01:52

So, I started showing signs of HS when I was 10 years old. So, I’ve had HS for 35 years; to age myself. And at first, I was told that they were recurrent boils, and I remember my mom taking me to the general family practitioner, which you had in those days, and they would just lance them. And I remember my mom crying; I’m crying, it was an extraordinarily painful experience, and it’s like seared into my memory, unfortunately. Never really got an answer, I just knew that there was something wrong with me, and that I was different until about the age of 16, when I got my formal diagnosis. When I was formally diagnosed, I was told by the dermatologist that I had a black woman’s disease. So, I wasn’t really sure exactly what to do with that, because I already felt out of place in my skin; I knew something was wrong. Finally had a name for it, but then also to be told that I didn’t fit the disease demographic was really confusing for like a teenage girl, so at that point, I, basically, didn’t seek care for about 10 years based on that single line that I learned at my diagnosis, because I already felt like I didn’t fit, so if I went to see another practitioner, I felt like I was gonna be looked at as really, really strange, or that there was something wrong with me because I shouldn’t have this disease. So, it played a huge role in my life, actually, and I finally saw a commercial for a biologic, and realized that maybe the landscape had changed, and that I should return to care and give it a try. So, that’s exactly what I did, and unfortunately, I failed that biologic, and went to see a physician at the University, here in Seattle, and at that point, she suggested that I see a surgeon. And I was really in a precarious situation then, because I was dealing with an abscess that stuck out like a golf ball underneath my left breast, and I was wearing three bras at the time to keep my breast from touching it, because every time it would, it would cause excruciating pain that would just take my breath away. So, when I went in to see her, I was really hopeful that I would have something that would help, but it did not seem that that was going to be the case. So, she actually encouraged me to see a surgeon, and I said, “I’m not having surgery; I’m the breadwinner in my family; I have a small child, like, there’s no time to take off work. I just have to plow through this.” And she’s like, “Just see the surgeon.” So, I humored her, went the next week, had a consult. He was the first person that ever told me that he thinks he could help me. And I left there signing the surgical consent, because I was finally like, “Oh my God. In all my life, I’ve heard there’s nothing I could do for you.” And then, all of a sudden, it was like there was a glimmer of hope. So, I went in the next week and had both of my axilla or my underarms, excised and left open to heal from the inside out, and as well as the spot on my left abdomen. And it was the best thing that I ever did for myself in my life, and led me to where I am today. So, I knew I must have made the right choice. I’ve gone on to have six other wide excision surgeries in, mostly, in my groin, and I consider myself to be pretty much in remission now. I get an occasional flare; it doesn’t completely 100% go away. I’m not on any medication, though, to control my HS, and that was the answer for me, was that surgery, so that one pivotal choice to go ahead and have that surgery, like, completely changed the trajectory of my whole life.

Steven Newmark  05:05

So, yeah, I mean, it’s a very inspiring story, and for me, the learning, it’s, don’t give up, you know your body, in a way that a doctor might not, and keep going until you are able to get the care that you need, essentially.

Brindley Brooks  05:17

Definitely! And that there is, no matter how hopeless you may feel, that there is always hope, that there’s something that may work to just keep going, keep trying, keep advocating for yourself, keep showing up, even when you feel like there’s nothing left to give and that you could not bear another disappointment. I feel like my learning from this is that I didn’t get to choose my scars with my HS, I was given those scars, but the scars in my armpits, and the scars that I bear now were my choice, and I feel like there wasn’t much in the way of options for my HS and for treatment, but I actually got an option with this, and I chose that, and that was such an empowering feeling to take control over something that has had control over me for so many years of my life.

Steven Newmark  06:03

Yeah, very inspiring. Well, let’s turn to HS Connect. So, tell us about what inspired you to create HS Connect, and how does the organization support patients and their families?

Brindley Brooks  06:12

So, HS Connect was born after I had that initial surgery, I realized that especially since the surgeon had told me that he had treated multiple patients with HS in the past, and that he was familiar with it, I thought, “Okay, maybe we’re not so strange anymore,” and like so many other people living with HS, we don’t really talk about our condition – there’s so much shame and stigma that’s attached to it, that you kind of carry it like your dirty little secret. So, I started joining Facebook groups and learned more about the condition, and then ended up meeting up with, who became my co-founder of HS Connect. And during that time, she was writing articles for HS, and I was editing those articles, and that’s how we kind of started our friendship. And she’s since retired from the organization, but she was the first step in leading me down this path, and it has had explosive growth. There’s not much in the way of education and factual information about HS. Unfortunately, everything that circulates, including from the DERM community, is a lot of old and antiquated information about the condition. So, trying to write that within the patient community and the DERM community has really been an undertaking. So, our focus at HS Connect is on education, factual education: so, getting rid of all of the misconceptions, and the stigmas that surround our disease, and really just making sure that patients understand that they have shared decision making ability with their physicians. We have an endless amount of resources; we do our own podcasts on there; we have a podcast called the “Hidradenitis SuppuraDIVAS,” that talks just about all things HS. We are building a mental health program specifically for HS that we’re hoping other chronic skin diseases will take note and do the same for their population. We are doing our very first in-person patient meeting this year. We advocate at state and federal levels. I mean, we’re really all over the place, and have our hands in pretty much every pot there is to have your hands in. Anything we can do to help make the life of an HS patient better, and to really reduce that shame and stigma, so that patients can start coming forward and being seen and validated for their condition.

Steven Newmark  08:17

Yeah. Well, you mentioned education, and how important that is to get quality resources. We at GHLF recently put together a guide for HS, and I know that you were helpful in allowing us to incorporate the patient perspective into that guide. Can you talk a little bit more about these guides and education resources generally, and why it’s important for patients?

Brindley Brooks  08:37

Absolutely, I think that you guys did an amazing job with the patient guide. Involving patients and patient advocates is a huge thing, because it can only resonate so far unless you involve the actual community in the design of that and the information that’s being given. And I felt really honored to be asked to participate in that, because it gave us another opportunity to put factual information out there, in front of the patient community, and to provide them with just one more piece of resource, and one more piece of material that will help them on their journey. And I don’t think we can have enough factual information out there about HS, especially when we’re trying so hard to break all of the stigmas down. So, it was a wonderful thing to see – I’m very, very pleased with how it came out, and really appreciate the opportunity to have been able to participate in that.

Steven Newmark  09:23

Yeah, and beyond education, you, like GHLF, and together, we engage in advocacy, which is really critical when dealing with the HS journey. Can you talk a little bit more about your thoughts on why advocacy is so important and how patients can get involved?

Brindley Brooks  09:37

The thing about advocacy, and I didn’t really understand this when I started, is how many levels there are to advocacy. Sometimes, just sharing your own personal journey is a way of advocating for other patients, so that they don’t feel alone. Not everyone is meant to, or wants to, be an advocate that has meetings with the FDA, you know, who goes and presents on Hill Days and talks with you know, Senators and House representatives, and it’s not made for everybody. But for us, we found that it’s really one of the things we absolutely love doing, is being able to be heard and to, potentially, change things for patients on those levels, including we just sent out a petition for patients to sign to try and get laser hair removal covered, as a medically covered benefit for HS, when it has a lot of efficacy for patients, but is not a currently covered benefit under most insurances. So, we’re trying really hard to do whatever we can at every single level, whether that be insurance, state, federal, you name it. We’re trying to get things changed.

Steven Newmark  10:36

Yeah, and it’s particularly great when advocacy organizations come together, like GHLF and HS Connect have, and it’s, you know, it’s essential for advancing the cause, if you will.

Brindley Brooks  10:46

It’s imperative that we join forces, especially, when it comes to things that are not necessarily like a specific purview for an organization. When they reach out and call in experts, it’s absolutely amazing and vice-versa, that we’re able to call on GHLF when we need that support as well. It’s definitely a bi-directional relationship, for sure.

Steven Newmark  11:07

Excellent. Your organization has been phenomenal, to say the least, and we’re so grateful. Looking ahead, it’s 2025; what are your hopes for the future of advocacy in the HS community, generally, and maybe more specifically, in 2025 you mentioned laser hair removal as being covered as something that you’ve sought. What other priorities do you have for 2025, and beyond?

Brindley Brooks  11:26

So, 2025, advocacy wise, we’re looking for some places we can get some wins, which may be little, but I think they end up being very mighty, because it enables us to put some pressure elsewhere, to encourage others to follow suit. So, while it may be this point just Aetna in North Carolina, for instance, that win would enable us, if they were to reverse and cover laser hair removal, to make changes with larger organizations and insurance companies. So, that’s kind of where we’re headed right now and then, there’s so much other advocacy work being done. Like I mentioned earlier, we’re doing a mental health entire program called “Healing Space” for HS, and it’s going to include alternative therapies as well. So, we’re going to do movement therapy, art therapy, music therapy. I mean, really, we’re trying to cover as much as we can, so that every patient can find something that resonates with them in that, and then there’s also going to be a podcast and webinars that go along with that, with guests that are in the mental health space as well, and many other programming components.

Steven Newmark  12:30

Well, keep us informed throughout 2025, and beyond, and we will certainly share the information with our listeners and share it on our social media channels to make sure as many folks, who are interested in the topic, are listening and tuning in and watching, because these sound like some great programming opportunities.

Brindley Brooks  12:46

Yes, definitely.

Steven Newmark  12:47

Thank you again, Brindley, for all that you do. Thank you for coming on today and your time. Any last words of, I would say encouragement, because you were such an inspiration. So, any last bits of wisdom?

Brindley Brooks  12:58

I would say, if you have HS, or you know someone with HS, which I’m gonna guess all of you do, since it’s at least one in 100 people. So, pretty much everyone, who is listening knows someone with HS, whether they know it or not: open those conversations, and if you feel like someone may be suffering, or if you are listening and you have HS, please come our way. We have been waiting for you. We have an absolutely vibrant and amazing community that is here ready to accept you with open arms. And there is absolutely nothing like finding your people.

Steven Newmark  13:28

Wow, that’s great. Thank you so much, Brindley, and we will stay in touch.

Brindley Brooks  13:32

Perfect! Thank you.

Zoe Rothblatt  13:35

Steven, that was a really great conversation. Thanks for bringing Brindley on our podcast, and to our listeners, I just want to mention the guide that was mentioned is available at ghlf.org/HSpatientguide. So, definitely check it out, and I hope it helps you advocate for yourself.

Steven Newmark  13:53

Yeah. And while you’re checking out ghlf.org, Also check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  14:00

Well, everyone, thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  14:13

I’m Steven Newmark. We’ll see you next time.

Narrator  14:18

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week to Help You Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.

Zoe Rothblatt  00:18

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:22

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life. And today, we’re recognizing Black History Month by exploring the critical role of black leaders in public health and the ongoing fight for health equity. Black History Month is a time to honor the achievements, resilience, and contributions of black individuals throughout our nation’s history. In health care, this means recognizing the groundbreaking work of black doctors, nurses, public health professionals, researchers, and patient advocates, who have shaped medical advances and access to care, often despite systemic racism and discrimination. It’s also a time to reflect on persistent health disparities, from higher rates of chronic disease in black communities to unequal access to quality care. Addressing these inequities requires continued advocacy, policy changes, and amplifying the voices of those working to make health care more just and equitable for everyone.

Zoe Rothblatt  01:12

Well, said Steven, and that’s why we are thrilled to be joined today by Dr. Georges Benjamin. Dr. Benjamin is known as one of the nation’s most influential physician leaders, because he speaks passionately and eloquently about health issues having the most impact on our nation today. From his first-hand experience as a physician, he knows what happens when preventive care is not available and when healthy choice is not the easy choice. As Executive Director of the American Public Health Association since 2002, he’s the Leading Association’s push to make America the healthiest nation. Dr. Benjamin, welcome to “The Health Advocates.” Can you begin by introducing yourself to our listeners?

Dr. Georges Benjamin  01:52

Well, thank you. I’m Dr. Georges Benjamin, I’m an internist and emergency physician, and I’m the Executive Director of the American Public Health Association, in Washington, DC.

Zoe Rothblatt  02:01

And maybe you could dive into talking about what inspired you to pursue this career in medicine and public health.

Dr. Georges Benjamin  02:08

Well, you know, Zoe, I went to medical school to actually get a basic science background, so I could do molecular genetic research. Had no interest in clinical medicine, but, you know, medicine is addictive, and so, I absolutely fell in love with, not only, clinical medicine, but emergency medicine. It was in early years of emergency medicine emerging as a specialty, and I just fell in love with it, and so, I spent the first half of my career practicing emergency medicine. Got into administration very early, while I was in the army, and I was at the Community Hospital as chief of Ambulatory Care, my phone rang, and the Mayor was on the other end of the phone and said, “Have I got a job for you?” And I became the City Health Commissioner in Washington, DC, so I kind of went in and out of Emergency Medicine and Public Health for a while, and then public health stuff.

Zoe Rothblatt  02:49

And I mean, that’s so interesting, because emergency medicine is so almost like reactive, like something happens and you’re reacting to it. But a lot of public health is proactive, like thinking about policies that will, just like, generally support the health of people. So, I’m wondering, from your perspective, how navigating that transition was for you, or, like, some of the big challenges that you saw, like differences between those two.

Dr. Georges Benjamin  03:12

You know, it actually turns out that emergency medicine is, you’re right, very proactive, and emergency medicine-oriented. And in many ways, people think of public health being more contemplative, but it turns out that the two disciplines are really mirrors. Every day in public health, we have some kind of crisis, from some small administrative one to really big things. So, it’s the concept of going from crisis-to-crisis to problem-to-problem, and doing significant problem solving, often with very little data, which makes the two disciplines pretty much aligned.

Zoe Rothblatt  03:43

And maybe like, what are some of the biggest challenges that you’ve focused on during your career?

Dr. Georges Benjamin  03:49

I tell folks I’ve seen it all. I was in Washington, DC, when we had a riot – It was also the early days of the HIV AIDS epidemic. So, engaging with community based organizations, and for me, learning how to work more collaboratively with community based organizations, particularly in communities where underserved was a real lesson for me. When I went to state of Maryland, as a health officer, during my eight years there, four as deputy and four as secretary, we had a drought, we had a tornado that went through the community, we had the anthrax letters – so, that was the bio terrorism attack – we had a 700 person food borne outbreak; we had an outbreak of a new disease called hysteria, which is still pretty much a mystery – a red tide type of disease that impacts both fish and may very well have a health impact to people. So, we had, obviously the usual stuff, HIV, AIDS, influenza every year. So, it was a hodgepodge of pretty much everything you could think of happening in the human experience occurred to me when I was a health officer and we enjoyed it. It was a time when I had some of the most creative people I’ve ever worked with. And then when I came to the American Public Health Association, kind of going from being a real actor and making things happen to being an advocate at the nation’s largest public health association, a very, very different experience, where I manage a big budget, run a journal, a small book company, and of course, we’re doing a lot of advocacy each and every day, try to get the administration in Congress, at the national level, and then trying to influence people at the local level to do the right thing, to improve people’s health.

Zoe Rothblatt  05:16

That’s so funny you say, you enjoy it, because it I mean, to my ears, it sounds like a ton of chaos, which I’m sure it was, and I think a lot of our listeners can relate, because these are people who live with chronic illness and are encountering symptoms, doctor’s appointments, etc, that’s all kind of like chaos, and then you have to figure out a way to navigate that and advocate for yourself, like you’re saying. You know, it’s like, same with the individual, same with these large scale issues like you have to go step-by-step and advocate. You mentioned advocating nationally and locally – what are some of the advocacy priorities that you and APHA are focused on?

Dr. Georges Benjamin  05:51

We know at APHA, we’re focused on getting everyone in the system of health insurance coverage. So, making sure that everyone in this country has adequate health insurance coverage at an affordable price. We are supporting things way upstream, like food insecurity, climate change. We’re talking about gun violence, reproductive rights for women, rising sexually transmitted diseases right now is a big issue. And as you know that we just finished the tragedy of COVID, which really hasn’t gone away completely, and we still have an opioid epidemic and obesity epidemic. We have a problem with women of reproductive age dying during pregnancy that was often preventable. So, there are many things that on our plate right now that we’re doing. And what makes public health so interesting is that we know that the vast majority of things, if you do the right thing, are preventable.

Zoe Rothblatt  06:37

It’s so interesting you say that because I have a background in health policy and management, and sometimes it’s hard to show public health successes, because when they’re really successful, they become almost invisible, right? They don’t exist anymore. They’re just a normal part of society, or you’re not seeing these diseases circulate. So, we think that, “oh, it’s like not so necessary, because we never existed at the time when it was a big win,” and people forget even like what you’re saying, like, COVID didn’t really go away. But for a majority of people that don’t live with chronic illness or immunosuppressed and aren’t concerned, they feel like it has so I guess, how do you, like, grapple with that in your everyday work? Of like, trying to reinforce the importance of tackling these issues.

Dr. Georges Benjamin  07:20

I mentioned that I was an emergency physician, so we were always seeing people who were sick or injured, usually at their worst clinical state when they came to hospital emergency department. And, you know, you work very hard to make them better. One of the things we do get to do in public health is say, you know, zero days, no injuries. We get to say that good you ate today, you had a wonderful day, and you did not get sick from a foodborne outbreak; you got in your car and that fender bender that you had, you didn’t get seriously injured – those kinds of things are things that we have to promote. We have to do a better job of telling our own story. And you’re absolutely right, when we do our best work, nothing happens. We are seeing that now with the debate about vaccines, people forget that measles, which is a highly infectious disease, when a person with measles used to come into the hospital emergency department, we don’t see them very much anymore, but when they would used to come to the hospital emergency department, people would freak out. You would not admit people with measles to the hospital because it was so infectious, unless they were severely ill, severely dehydrated. So, we have to remind people that Measles is not a benign disease; it not a little rash, and the kids get a day off from school. People get measles pneumonia, they get measles encephalitis, they die from measles. The good news is, it’s gone away. The bad news is, and most clinicians haven’t seen it, the bad news is, because we’ve forgotten people, who are now dismissing the importance of vaccinations.

Zoe Rothblatt  08:39

And you started to touch on this earlier in our conversation about working with different groups, and I know that you serve on the board of many organizations. Can you talk to us about how partnerships like this can accelerate progress for public health?

Dr. Georges Benjamin  08:53

Public health is a team activity. We do our best work when we go together and we leverage the strengths and weaknesses that we all have: every organization has things they do very well; every organization has some things in which they need a little help. And to the extent, we can bring partnerships together. So, we do one thing very well, and you do something better, we can accomplish better goals working together. So, when I sit on other boards, I’m trying to bring my expertise and experience to the conversation. And in some cases, we bring our organizations together to try to accomplish common goals. And if you do it that way, you can do it at a much lower cost and with much greater efficiency. When you do that, it’s the whole issue of bringing together, in some cases, groups that have real strength and engaging the community with real groups that have real academic knowledge that we don’t necessarily have, and sometimes the public health department or organizations, like APHA, we can be the translator between the highly academic and the community based groups.

Zoe Rothblatt  09:50

Yeah, what you said about bringing your expertise to the table reminds me of something else I wanted to ask you about, which is about increasing diversity, like it’s so important to have diverse voices, people from different backgrounds and leadership roles in public health, because, like what you’re saying, it is community based, and we need representatives from different communities in order to best serve those communities. And I know you’ve been recognized as a top minority executive, and I’m wondering if you have any advice on how we can bring in more diversity into public health leadership.

Dr. Georges Benjamin  10:24

You know, we have to value diversity to start with, and recognize that people have different life experiences, and they bring those different life experiences to the table, and they have a conversation. I remember being the health officer in Washington, DC., again, and, you know, I came up in a middle class family; I grew up in Chicago, but when I talk about my growing up in the hood, it’s not the same as some of my friends, who grew up in abject poverty; I did not grow up in abject poverty at all. And I remember coming into the city, as a city health commissioner, and really having to walk into the lower income communities to really get an understanding of what they were living, what their decision making tree was. And I remember that some of the kids, for example, who we were trying to convince to, you know, live a better life, not be sexually active, too early, not to use drugs, not to carry firearms, to stay in school, all the things you tell kids, you know, that you want them to do, don’t smoke tobacco, those kinds of things. And we had a real schooling, when some of these middle school kids set us down and said, “You know, we understand everything you’re saying to us. You know, you’ve done a really good job of educating us. But the truth of the matter is, we don’t believe we’re going to live long enough to get HIV AIDS. We’re not going to live long enough to have a fruitful life like you have, that you’re lucky and you were able to do this.” And so they live like someone with a terminal disease; they go out and they say, “I’m going to do everything I can do, because I’m not going to live that long.” So, I had to understand that part of my job in public health was to address the hopelessness and helplessness in so many of our communities, to give these young people a vision of the future. And if we could do that, they would make different choices in their lives, because they knew they had time to make those different choices. And so I learned a lot, and so my life experience as an African American male, just because of I’m an African American male, does not mirror people who of the same race, ethnicity, who were in lower income communities. My experience is very different. So, having those people sitting at the table to school me was very important for me, and that’s why I believe in diversity.

Zoe Rothblatt  12:20

Yeah, I mean, what you’re saying is so important, like, what I heard from you is we can’t make assumptions about communities, like we have to go in and listen. One size fits all does not work when it comes to public health, because people have different backgrounds and experiences, and it’s really important to tailor these programs. Which leads me to ask you, how do you evaluate a program like, let’s say, you know, with this scenario, you said you’re gonna address those feelings of hopelessness, and, you know, improve the understanding in those children that you can live longer, and these are the ways to get there. How do you then, whatever ways you implemented a program to do that, how do you evaluate, is this going well, what do we need to change?

Dr. Georges Benjamin  13:02

You know, it starts with really understanding what you want to accomplish, and then spending some time as part of your program design and going and listening to the people, who are going to participate in the program, who are going to benefit from the program, and going there say, here’s what we’re trying to accomplish, we’re trying to reduce the incidence of diabetes in our community, how would you do it? And have them inform your program design. And you do that on the front end, not on the back end, not when you’ve gone in the back room and designed it based on the best sciences you understand it because the evidence is good, the science is good, but as you said, it doesn’t track in every community. And, more importantly, your goal for that program may not necessarily align with the goal of the program participants. And so you’ve got to make sure that you can address the goal of the program participants first, and then you’ll often be able to get your goals for the program address. I’ll give you an example: if you want to get people to get down the ideal body weight and you believe that nutrition, diet, and exercise are very important, let’s talk about the exercise component. You know, if they can live in a community where they there’s not walkable, and bikeable, and green, where the street lights are out, where it’s not safe to be out at night, you can’t get them on walking unless you’re going to buy them an expensive gym membership and Uber them one way back and forth, it’s not going to happen. So, the other way to make that happen, because we talk about just getting up and walking around the block two, three times a week, just to, you know, get yourself to be more physically active, and then, of course, eating better, and all those kinds of things. The exercise component does not happen until you go in, sit down with them, and they’ll tell you what we can walk, but we can’t walk safely in this community; here’s what you need to help us with so that we can do the exercise component of the plan you’re trying to do. Once you do that, you fix that social determinant of health, thus making that community safer, more walkable, then apply the medical science that you know to get the outcome that you trying to achieve.

Zoe Rothblatt  14:45

Yeah. I mean, it sounds so simple when you say it like that, you know, like of course, we should be thinking of the participants goals, and not just public health goals. But then when you go in, it really isn’t. There’s all these other factors, the social determinants, that influence health, and it’s just so important to have people like you out there thinking about this and also just coming on today. Thank you to share your voice and, hopefully, educate our listeners a little bit more, and myself included, about how we can think about helping our communities. So, my final question for you is, if there’s one takeaway from our conversation today, or just looking back at all your work in public health that you want our listeners to remember, what’s that takeaway?

Dr. Georges Benjamin  15:26

I think it’s very important for those of us in the health world to do more listening than talking.

Zoe Rothblatt  15:31

Amen to that. I agree. We always say that, like the patient voice is so important because then it’s like you and your health and your story. So, I agree with your message of, you know, listening and advocating. So, thank you so much for joining us today and sharing your wisdom with our audience.

Dr. Georges Benjamin  15:47

Thank you.

Steven Newmark  15:49

Well, another great conversation, Zoe. I, especially, appreciated when Dr. Benjamin talked about making a lasting impact by really learning the needs of the community and not making assumptions.

Zoe Rothblatt  15:58

Agreed, it was really informative. I appreciate him talking about how we can all work together to make a difference, you know, organizations, public health leaders, coming together.

Steven Newmark  16:08

Absolutely. Before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  16:14

Well, everyone. Thanks for listening to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you liked this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  16:28

I’m Steven Newmark. We’ll see you next time.

Narrator  16:33

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.

Zoe Rothblatt  00:18

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

This is a special episode in light of some of the movement taking place in Washington. We’re recording this on Friday, the day after the conclusion of a set of hearings for HHS nominee Robert Kennedy Jr. So, it was a pretty big set of hearings that we thought we should recap before the end of the week, and get it out there.

Zoe Rothblatt  00:40

Yeah, maybe we can start with, what exactly is the role of the head of HHS? And also like, what are these hearings about?

Steven Newmark  00:47

Excellent question. So, under the Constitution, we have several roles that are appointed by the president with the quota advice and consent of the Senate, which has come to mean an actual vote of Senators equaling 50% plus one. This is a role that he has been nominated by President Trump to lead the Department of Health and Human Services, an agency that manages a $1.8 trillion budget, an agency that shapes policies that directly impact the health of all of us, an agency that underneath it has many sub-agencies that we are familiar with – agencies such as the Food and Drug Administration, the FDA, agencies such as the NIH, which deals in research, the CDC, which helps contain disease outbreaks, of course. And also notable is that HHS really acts as the liaison between the federal government and state and local health authorities. But perhaps most notable is the Secretary of HHS is essentially the top public health officer in the United States. It’s a very high-profile, and visible position from which to promulgate theories and ideas on public health.

Zoe Rothblatt  01:52

Yeah. So, we can see how this impacts our community, who are people who live with chronic disease, very concerned with health. This is going to be the key public health leader overseeing these agencies which, ultimately, have decisions and influence on how health care is received in access in this country. So, Steven, why don’t you break down like, some of the main points that you got after listening to the hearing?

Steven Newmark  02:14

Yeah, so let’s get into it. We’ll keep it quick, but essentially, it was an important week. It was two hearings, actually, one on Wednesday and one on Thursday. Without getting into the specifics, the hearing on Wednesday was with the Senate Finance Committee, and that will be the committee that ultimately decides whether or not to vote him out to the full Senate for a vote. So, it was technically two separate hearings, but I guess you could think of it as one extended hearing. With that, there were a few takeaways: you know, overarching, it was very obvious that he did not have any support on the Democratic side; Democrats came out pretty strong. Most of the questions focused on vaccines, because this is RFK’s most controversial and historic stance. We got glimpses of other topics such as Medicaid, and a fair amount dealing with abortion as well. I did not hear much about chronic disease or things of that nature. But again, I would say the overarching was on vaccines, with secondary topics being Medicaid and abortion. So, just to get into it, some takeaways. So, the first is, you know, there were a few questions about the organization of HHS and the health ecosystem. Generally, he fumbled a few times. He confused Medicaid and Medicare multiple times. He did not have an understanding of EMTALA, which is the Emergency Medical Treatment and Labor Act; it’s an important act that, essentially, says that you cannot be denied emergency services, or, I guess you could say in the affirmative, it requires health institutions to provide you with services regardless of your ability to pay. He clearly struggled to understand the differences between Medicare Parts A, B, and C. So, we’ll see how he goes from there. There was a more positive which we’ll come back to, I would say, from the perspective of patients, that was sort of the overview when it came to HHS itself and the health ecosystem. When it came to the question of science, because this is someone who has, shall we say, questioned science a lot in the past, just on a personal level. And I would say, on behalf of GHLF, I think I’m allowed to say this. This was perhaps one of the more troubling aspects. A quote that I saw that he said, I think multiple times, is “I will look at the evidence before I make up my mind,” which, on face value, sounds very reasonable. You know, you want to look at the science, right? You want to look at data, right, before you make a decision. The problem is, the science is very clear on many of the issues that he was questioned about, and he just ignores that, and he comes back with this, “I’m going to look at the evidence. I’m going to look at the evidence.” All right, so specifically, when dealing with the issue of data, this is where vaccines came into play, and vaccines and autism. Even though large scale studies, over and over and over show no link between vaccines and autism. RFK Jr. cited a non-peer reviewed blog as evidence of a potential connection, and this was something he did not back down on in the hearing. In terms of safety, he questioned the safety of vaccines that are currently approved, again saying, “I need to see the data. I want to see the data.” These are, again, things that are already out in the world, where the safety and efficacy has already been proven. If not, and proven enough in the labs, certainly proven enough now that it’s in the real world. He also had issues dealing with some financial conflicts of interests. He has a stake in a vaccine related lawsuit, specifically, which you would think would pose a conflict of interest. His stake is in the accusation of issues regarding the vaccines and harms that may come from it, and he refuses to withdraw himself from the vaccine. So, he has a personal financial stake in an outcome of something, and as HHS Secretary can push forth information and data that would help his own personal financial case. All right, I have to say my favorite moment of the hearing, I have to tell you, on Wednesday, was when Senator Bernie Sanders confronted him with a photo of a baby onesie that he was selling on his organization’s website. The ones he says, “Unvaxed and Unafraid,” and another one says “No Vax, No Problem.” RFK, Jr. refused to answer whether he agreed with the sentiment of those particular onesies. He called himself pro-vaccine. But again, he was also selling these onesies for $26, I found out, according to Bernie Sanders, just questioning, we’ll see. There were definitely some issues there. He did say some things that I think are, if not, patient-friendly, more public health-friendly: he supports PEPFAR, which is the President’s Emergency Plan for AIDS Relief in Africa, although in the past, he has said that “HIV doesn’t cause AIDS,” but that being said, a support for PEPFAR is something that if you support public health, is something that you should support. He also said that he supports medication assisted treatment for substance abuse disorder, but this is a stance that is in opposite of past agencies made, but he seems to have come around on that. He also said that he wants to invest in bird flu vaccines. However, he would not commit to investing in mRNA vaccines, once again, saying, “I need to look at the data.” But mRNA vaccines, as we all know, worked very well and are continuing to work very well when it comes to COVID. But he hedged on investments in those for future outbreaks such as bird flu. He said that he supports the Polio vaccine and he would not change its recommendation for usage in the United States. And just to end on a very positive note, I think that Senator Chuck Grassley, of Iowa, asked him, specifically, about the importance of lowering drug prescription prices and holding pharmacy benefit managers, PBMs, accountable. And in response, Kennedy said that he agrees with those provisions. So, that was good to hear. And most notably, Senator Grassley is somebody that GHLF members have targeted. We’ve visited with Senator Grassley in Washington and in Iowa, over the past several months, several years, so to see a question like that, get out in an open hearing like this, and to get the potential HHS Secretary affirmatively on record under oath, agreeing that pharmacy benefit managers should be held accountable for drug prices is a very good thing.

Zoe Rothblatt  07:53

Yeah, thanks for that recap, Steven. You know, like you mentioned, some of the views around vaccines are concerning. I’m glad you ended on that positive of we need more PBM transparency and reform, so I guess, like, I’m a little hopeful, and we’ll wait to see what’s to come. So, what happens next? Is my question. We’ve had these hearings, we found all this out, what’s now?

Steven Newmark  08:15

Good question. So, now the finance committee is going to vote for him to go to the entire Senate, or they’ll stop his nomination altogether. I think based upon what we saw, it’s a strong likelihood that he will go and get that full vote before the entire Senate. The full Senate vote has not been scheduled as of our recording – we’re recording on Friday. But it will probably be very fast. This used to take many, many weeks between going from a committee to a full vote. Four years ago on Biden’s nominees, it was about a month on average, the committee and full votes. But I think there’s a very good chance that the vote could come next week. Things are moving at lightning speed in Washington. All around, we’ve already got, I think two, maybe more, at least two members of the Cabinet have gone through very quickly, Pete Hegseth and Kristi Noem. It looks like the way things are pacing in Washington, it’ll probably come for a vote next week, if not the week after, and it looks like every Democrat will probably vote against him. However, he’s got a few buffers of votes on the Republican side, and it doesn’t appear as though any Republicans seem to be voting no, and even if, and he could still escape by with a few no votes anyway.

Zoe Rothblatt  09:20

All right, so, I mean, I guess it’s good, like, if he’s gonna get in, get him in sooner. And, you know, get the work started. I guess, maybe, perhaps by next recording…

Steven Newmark  09:28

Depending on what the work is.

Zoe Rothblatt  09:30

…depending what the work is. I guess, maybe perhaps by next recording will have an update for our audience.

Steven Newmark  09:36

Well, before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  09:42

Well, everyone, thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen.  I’m Zoe Rothblatt.

Steven Newmark  09:55

I’m Steven Newmark. We’ll see you next time.

Narrator  10:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to the “Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help You Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.

Zoe Rothblatt  00:18

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:27

And speaking of the health care world, it’s definitely been a busy start to the second administration of President Trump. There’s been lots of Executive Orders, Proclamations, and Declarations. So, we have a bunch to touch on. And today, you know, we’ll focus in our sector about, you know, what impacts health, and health care, and what pertains to our community.

Steven Newmark  00:49

Yeah, that’s right, Zoe. It has been a heck of a first week. Let’s start by saying, President Trump has made a lot of announcements: some are official actions; some not so much. As of this recording, I believe that there have been 23 Executive Orders signed so far. Hopefully, in all the flurry, there will be some policies that you will cheer, and perhaps others that you may not like. For those that you do like, “Great!” and for those that you find troubling, it can be difficult to digest, how to respond. If you’re listening to our show, you probably have some inkling towards advocating for the patient community, and thus the desire to see change where we see fit. So, towards that end, our advice on all that has happened is to, if you’re dispirited, is pick your battles.

Zoe Rothblatt  01:27

Right. Yeah, we mentioned a few things. So, maybe we’ll get started by just like explaining some of the lingo, because there’s been, like, general statements, Executive Orders, and actual legislation. So, let’s start with general statements: this isn’t really enforceable by law, but of course, that could have an impact on just like public sentiment, and feeling towards what’s being said, and how people can react based on that legislation. You know, once passed and signed by the President, these are the laws of the land, unless they’re found unconstitutional. And then, now we’ve been hearing a lot about Executive Orders, and this has been, you know, you said 23 of them as of this recording, this is like the crux of what we’re talking about today.

Steven Newmark  02:08

Sure, yeah. An Executive Order is a directive issued by the president that manages operations within the federal government. It carries the force of law but does not require approval from Congress. So, again, it has the force of law, but it’s limiting in that Executive Orders cannot override laws passed by Congress, nor can they violate the constitution. Courts can review Executive Orders and invalidate orders that are deemed to be unconstitutional or exceeding presidential authorities. In the most famous example of an Executive Order was the, I think the most famous example, would be the Emancipation Proclamation, which in 1863, Abraham Lincoln used to declare the freedom of slaves in Confederate States.

Zoe Rothblatt  02:46

I would definitely agree. If you asked me, “What’s a famous Executive Order?” I’d probably say that one too.

Steven Newmark  02:51

Well, let me ask you this. Did you know it was an Executive Order before we did the show?

Zoe Rothblatt  02:54

Probably not. I guess I would say it’s a proclamation, since that’s in its name.  [small laughter]

Steven Newmark  02:58

Right, right. Me neither. I didn’t know that either, to be fair, so a little research before the show and look what we found.  [small laughter]

Zoe Rothblatt  03:04

So, what’s been happening in week one of this new administration?

Steven Newmark  03:09

You know, we said it’s a lot. I think this comes directly from the administration itself. They’re employing what they’re calling a “shock and awe moment,” if you will, putting out a lot of stuff in one place. And perhaps of all these executive orders, these proclamations, these statements were being made over the course of 12 months, it would feel a little bit differently. You would be able to absorb them individually. But because so much is happening at once, it is a bit overwhelming, to say the least. And there is a fair amount that really do touch on health care policies. Some impact health care directly and some indirectly. So, we’ll talk about some of them. You know, we just don’t have the bandwidth to get to all of the changes. But let’s start with one that is directly related: Trump rescinded a Biden Executive Order that was aimed at lowering prescription drug costs.

Zoe Rothblatt  03:53

Yeah. So, that Biden Order had directed the secretary for the Department of Health and Human Services, HHS, to consider and test new health care payment and delivery models that would lower drug costs and promote access to innovative drug therapies for beneficiaries enrolled in Medicare and Medicaid. So, CMS had been planning to do stuff; it hadn’t actually taken effect, I’m pretty sure. So, like, I’m not sure if we’ll see too much of an impact from the rescinding of this order, aside from like, those plans won’t happen now.

Steven Newmark  04:25

Right. Yeah, I think that’s fair to say. I saw this particularly got a lot of play in the health policy media, I guess you would call it. But as you said, the actual Biden Executive Order, other than work being prepared by staffers at CMS, hadn’t gone into action, so the average person is not going to feel any, anything different.

Zoe Rothblatt  04:44

Also, something to note that we’ve been talking about a lot is the Inflation Reduction Act, the IRA. And from what I saw, that $35 cap on insulin and the $2000 annual out of pocket cap on prescriptions is not being touched right now. That seems to still be in effect, and also that Medicare still has the authority to negotiate drug prices under the IRA. So, I guess we’ll see how that might be impacted or not.

Steven Newmark  05:10

Yeah, those would be tough to overturn – those are actual laws. So, you know, as we said up top to an Executive Order or declaration by the President, cannot override laws passed by Congress. So, we’ll see how that plays – if it’s something that if the IRA or other laws that were passed are something that President Trump is going to want to get into. Before we move on, I just want to say it’s not clear why Trump issued this Executive Order; there was not much discussion around a lot of the signings. But in this one, I didn’t see much rationale for the signing. It doesn’t mean, I don’t say that in a good way or a bad way, just in more factual way. It sounds like a somewhat bennine Executive Order that Biden had put into effect, you know, looking to ways to lower drug prices, and now he’s just rescinded that. But you know, we’ll see what that means going forward. We’ll see if he comes up with his own Executive Order aimed at lowering drug prices, and go forward from there.

Zoe Rothblatt  06:00

And then, yeah, I guess the next on the list is something that was a little more predictable, which is about rescinding some orders around the ACA, the Affordable Care Act. We’ve heard about a lot in Trump’s first term about attacking the ACA, and these were revoking some of Biden’s Executive Orders that expanded access to the ACA.

Steven Newmark  06:20

Yeah, this is really getting to the weeds, so I’ll try to keep it high level. But this one, the Biden Executive Order allowed, particularly parents with young children, to gain more eligibility for more extensive coverage. This is what health policy experts called the quote family glitch. Before the Executive Order, for example, if a spouse’s employer offered family coverage, you were ineligible for a Marketplace Plan. So, for example, a friend of mine, her husband’s employer, was offered family coverage for a very high cost in relation to his salary, but because his individual coverage was affordable, that made him ineligible for the Affordable Care Act. So, this essentially allows a greater number of folks to shop for family plans, or had, I should say past tense, and it seems to have been a very popular Executive Order for those who took advantage. And it did help increase enrollment numbers.

Zoe Rothblatt  07:09

And yeah, and the other one related to the ACA was Biden had expanded enrollment period, so it was just like a longer time to enroll. And also funding for signing up for plans was increased, so I saw that nearly doubled ACA enrollment to 24 million. So, I could imagine this rollback of those orders would significantly reduce enrollment in the ACA. And I guess we’ll see that next year, because open enrollment has closed for this season, right?

Steven Newmark  07:38

Right. Um, this is another one. Not sure why this was done; Trump has a personal distaste, for sure, the Affordable Care Act, otherwise known as Obamacare. But again, there was little discussion that surrounded these signings, so it’s hard to understand their full purpose or policy rationale behind it. Look, you can’t, you know in terms of sign updates and availability, we do want to set parameters, and maybe there is a rationale for having expanded it, for Biden or for limiting it, but again, it wasn’t provided concomitantly with the signing. So, it’s unclear right now.

Zoe Rothblatt  08:08

Yeah, you know, like, if I’m trying to make sense of it in my head, maybe it was like, “Okay, we expanded this during, like, the big threatening time of COVID,”…

Steven Newmark  08:16

Good point.

Zoe Rothblatt  08:17

…when, you know, we needed, like, everyone needs to be on insurance all the time, in my opinion, but especially then, when you have such a big public health threat, and maybe it was like, “Well, now that that’s circulating and more, we have a better understanding of the way it circulates, etc, maybe now it’s time to reduce health insurance.” Which I don’t particularly agree with, but I guess maybe that’s how I can make sense of it.

Steven Newmark  08:38

Right, right. All right, another one, the Trump Administration ordered a full pause on external communications from federal health agencies, this includes the CDC, the FDA, the NIH, and even MMWR: Mortality and Morbidity Weekly Reports. So, I believe last Friday, there was no issuance of an MMWR report, which is a rare thing to have happen, and also HAN, and I forgot what HAN stands for (Health Alert Network), but I know it has to do with emergency alerts. So, there’s a pause going on.

Zoe Rothblatt  09:06

And there are exceptions for communication for like critical health and safety, but they are subject to review, so I guess that could delay the communications a bit. I know it isn’t, like, totally out there for an incoming administration to pause communications. This does seem to be temporary, but we’ll have to see. You know, after this full pause, like how stuff is filtered through, and posted, and disseminated to us afterwards. So, it’s like another one of those, wait and see, I guess.

Steven Newmark  09:34

Yeah, I think that’s a fair assessment. This is another one where I see a lot of discussion in the health policy, social media/media world. But I agree, I think let’s wait and see what this actually means. It’s not that unusual for a new administration, from Mayor to Governor to President, to put a pause on communications from agencies to get their handle on how they want to address the public.

Zoe Rothblatt  09:57

Yeah. And I also kind of wonder if, like a smoother transition between administrations could have maybe reduced some of this pause.

Steven Newmark  10:05

Probably, probably.

Zoe Rothblatt  10:07

You know, as we see with the rescinding of the Executive Orders, it’s like a really different position and mentality. So, it seems like there’s like a big pause and a big switch. So, all that say is, like, it’s a pretty harsh transition, and we’ll see what’s coming next.

Steven Newmark  10:21

Yeah, you would think, just from a practical standpoint, if you’re coming into a new administration and you didn’t like the way that the previous administration was doing something, you would sort of at least continue on, particularly when dealing with matters of health and science, while you try to figure out a more ideal way. Rather than say, “Hey, we’re going to stop everything that’s been going on for decades, and then we’re going to come up with a new way of doing things.” Does seem more natural to say, either have your plan ready to go or, as I said, develop your plan while not putting a pause on what has been the norm for decades with agencies, and particular agencies that deal, specifically, as I said, with science, data, public health; things that should not be controversial. But anyhow.

Zoe Rothblatt  11:02

Yeah, definitely, it feels like we have a right to that health information, right?

Steven Newmark  11:07

Yeah, certainly you want to know. And there is an emerging public health threat, knock wood that it doesn’t develop further. But there is the H5N1, that’s the bird flu, which seems to be growing, so you want to know what’s going on, or some folks do want to know what’s going on. I know I’m one of the people that would prefer to know, rather than not know.

Zoe Rothblatt  11:27

Well, another big one for us is diversity in clinical trials. I know we’ve been doing a lot of work to help recruit patients into clinical trials, especially diverse patients. We know that that is an ongoing challenge that a lot of studies are just based on one type of person, and that’s not the way the real world is – different people take drugs.

Steven Newmark  11:47

Definitely. So, just to be clear, there’s no pause as with the communications or anything like that. But what has folks up in alarm is there is a lot of discussion about reducing or eliminating DEI, Diversity, Equity, and Inclusion standards and practices in the federal government, and even beyond, and potentially as part of that, it’s unclear, the Food and Drug Administration has removed pages from their website which provide guidance to medical researchers on conducting medical trials with representative numbers of men and women, and ethnic, and/or racial minority groups. And so, for us at GHLF, this is something that we have been strong supporters of, the idea of increasing diversity in trials: we have helped encourage this, generally, throughout the country. And I think most people know this: this is not a matter of symbolic diversity. This is, as you just alluded, to, many medications and/or diseases, or conditions present differently in men and women, and in people with different genetic backgrounds.

Zoe Rothblatt  12:41

Yeah, it’s like, we know this is an ongoing challenge in areas of research. And we talk often about, I’m like, hesitating with my words, because it’s just like, it’s hard to wrap my head around this when we talk a lot about, you know, uplifting voices of different communities and building trust with communities. And I think it says a lot when people at the top are posting resources that helps people feel seen, you know, because they see themselves in these higher up places. And to take that away, I know just like has an impact of like, ‘Maybe I don’t really belong here and I don’t belong in these spaces,’ and kind of alienates patients from participating in research.

Steven Newmark  13:17

And beyond that, again, going back to what I said earlier. This is not about symbolic diversity, but I would argue necessary diversity to know how emerging therapies respond to people of different backgrounds. But also, equally as important, is that scientists have focused on the issue of diversity in clinical trials, because of a lack of a diverse population, can lead to skepticism from patients, who would be helped by medications, and unfortunately, there’s a sad history in our country of using, abusing, mistreatment of minority groups when it comes to medical research, and as a result, there is a mistrust in certain communities that needs to be overcome when developing new therapies. And that is important, and is an important rationale for increasing diversity when it comes to clinical trials.

Zoe Rothblatt  14:04

Absolutely. And you know, other resources we saw taken down was Spanish language content, LGBTQ+, and HIV resources. So, it just makes our job more important than ever to continue to put out the right information, and support these communities, so that people can have the right resources, so they can have informed conversations when they meet with their doctors.

Steven Newmark  14:26

Yeah, absolutely, absolutely. Well, that was a lot, and we’re not done by any means, but we’ll take our own full pause right there on external communications, because, you know, we need to catch our breath, frankly. But more happened. The United States has left the World Health Organization, and as we’re recording, R.F.K. is preparing to go to Capitol Hill for his nomination to become H.H.S. Secretary. So, there’s a lot more to come, lot more that we’ll be discussing in the coming weeks, and months, and years. Oh my gosh. And you know, hopefully there’ll be a lot of good things as well. There are some positive movements on legislation on Capitol Hill for bills that we believe will be helpful to patients in terms of gaining access, and affordability for medications. So, that’s something we’re gonna keep our eye on and keep informing everyone of. So, let’s take our pause there, and come back next week.

Zoe Rothblatt  15:11

And yeah, I guess with that pause, just to remind everyone that we have our 50-State-Network of advocates. So, you know, if you’re feeling inspired to share your voice, or share your story, definitely email us at [email protected] to get involved with our advocacy network.

Steven Newmark  15:27

Excellent.  Well, before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  15:35

Well, everyone, thanks for listening to the “Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you liked this episode, give us a rating, write a review, and hit that subscribe button wherever you listen.  I’m Zoe Rothblatt.

Steven Newmark  15:48

I’m Steven Newmark. We’ll see you next time.

Narrator  15:54

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week, to Help You Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:27

And today, we’re joined by Joel Aguilar, who shares his journey of getting diagnosed with psoriatic arthritis. Joel’s a veteran, and he describes, you know, getting discharged with pain and just spending a lot of time in pain, looking for answers to, finally, getting diagnosed, to then getting comfortable with the treatment options, and how he’s incorporated exercise in his life. We also talk a lot about navigating the Veteran’s Health Administration benefits, and he has some really good advice for people. So, I’m excited for everyone to have a listen.

Steven Newmark  00:56

Excellent. Let’s get into it.

Zoe Rothblatt  00:58

Hi Joel. Welcome to “The Health Advocates.” We’re so excited to have you here today. Can you begin by introducing yourself to our listeners?

Joel Aguilar  01:06

Yeah, my name is Joel Aguilar, and I live in Alva, Florida,

Zoe Rothblatt  01:10

And you were diagnosed with psoriatic arthritis, right? Can you tell us a little bit about your background, and, you know, what got you to first start noticing symptoms.

Joel Aguilar  01:21

Yeah, it was a long process; started when I was about 20 years old. I was in the Navy, I was in San Diego, and I was really into working out. I noticed my right bicep tendon started aching. Ended up, after months, getting a diagnosis of bicep tendonitis, did rehab with that, all kinds of different things, took a lot of ibuprofen. Over the next three years, I had a series of different responses in my body: I had other pains, other swelling, joints, neck, hips, feet, all kinds of problems. I was ended up in Japan, by 1992, I was, at that point they exhausted all their research on me and just, basically, said I was unfit to serve anymore because I couldn’t wear their shoes, I had really bad plantar fasciitis – my feet were swollen, I couldn’t get in normal shoes. I then was medically separated. Over the next, probably about 20 years, I self-paid for many different avenues that I sought myself. I would after, usually after a month or two with a certain doctor, I would get worn out and say, “Screw it,” and I would just be on to the next thing. Sometimes I would get injections; I was diagnosed with all different types of things; I was tested for many things, like Lymes Disease, different autoimmune things; nothing was coming up. Again, I would just wear out, just take ibuprofen, get some shots, and move on my way – just painfully. I, then, it was around 15 years ago I ended up showing up to the office of a rheumatologist who, within minutes said, “I know what you have.” And I’m like, “Yeah, whatever. Nobody’s ever been confident. In fact, nobody’s even had an idea what I had.” She just said, “You have psoriatic arthritis.” And I said, “Well, how do you know that?” And she goes, “Look at this pamphlet. Look at all the symptoms.” At that point that day, I had my toes and fingers were really swollen, and I had some other swelling in my neck, I think it was; I can’t remember exactly. I was thrilled, but also very skeptical. She said there’s a couple of courses I could do: one was oral medications, and she said injections would, for sure, do it. I was not ready to commit to injections at that point, I was trying to stay as natural as possible, and I’d done dietary changes to try to facilitate it, previously. About a few months later, and I can’t remember exactly how long, it wasn’t working at all, I just asked her, “Okay, can I try it out?” She had some trial injections, she gave me one in the office, I remember very well that day, it was afternoon. Within a couple of hours, it was like two to three hours, my swelling of my fingers and hands was completely gone. I just absolutely could not believe the response I had, and I’ve never been off of it since. I had to self-pay for a while – my insurance would not cover it for maybe the first year – and then I ended up finding out I was eligible for VA benefits, full benefits. The veterans, VA has now covered it for probably a decade, and it’s been life saving. Like, I, simply, not the same.

Zoe Rothblatt  04:14

That’s awesome. Like, I’m so glad to hear you say it’s life saving, and that after all those years of searching for answers, you not only got an answer, but a treatment that works. It’s, like, really unbelievable, which just makes me want to ask, during those years that you were going to every doctor and, you know, getting these like injections or testing done, what was keeping you motivated to keep looking for answers?

Joel Aguilar  04:38

It was cyclical, and as normal as anybody else, where you’ll get motivated when you’re in pain and you can’t do anything. And I had, you know, if I build up enough money or found somebody that would do something for cheap, I would try them out, and eventually, with no success. I would get unmotivated, and with that effort, and go back to resign to “I’m gonna have a life of pain and swelling and discomfort, and I’ll be limited.” So, it’s just a cycle of that. In anywhere from six months to a year, yearly basis, I would try something else.

Zoe Rothblatt  05:07

And then what was that moment like for you? You mentioned you were diagnosed within two minutes, and like, couldn’t believe that someone, finally, had an answer for you. What was going through your head at that time? If you can remember?

Joel Aguilar  05:18

Well, I remember that I hoped she was right, but I didn’t believe that she was right. When I believed she was right was that Friday, probably around five or six in the afternoon, when my swelling went down, and it was like unbelievable.

Zoe Rothblatt  05:32

And I’m sure there’s a lot of people out there that, like you have hesitation to start on a medication, like injections feel like a lot, especially injections you have to do yourself, like when you live with chronic illness. You kind of get used to that, but at first that feels like a really not normal thing. What, I guess, advice would you have for other people that are feeling similarly hesitant to start on an injection like you were in the beginning?

Joel Aguilar  05:56

My advice is: follow your instinct. I did, and my pain level and the time involved, I just did the math; if it had been a new onset thing, I, probably, would have stubbornly rejected it, but after that long, I was kind of worn out, and I just had to make a change, and even at some risk, even if it was unknown, if I was willing to do that.

Zoe Rothblatt  06:16

And do you remember anything that your doctor said or anything that you asked to help feel more comfortable? Or was it really just like “I’m feeling so uncomfortable, I gotta just try something”?

Joel Aguilar  06:25

I kind of thought that since it had been out a little while, I think a few years, and I was kind of trusting the FDA; they had done their research that I was doing, I think the risk assessment, which is that the risk-reward was likely in my favor, that was my math.

Zoe Rothblatt  06:40

Yeah, I think that’s great advice – think about your own personal risks, and benefits, and what feels good for you. I wanted to transition a little bit to talk about your fitness journey. And the first time we met, you talked a lot about how fitness is really important to your psoriatic arthritis journey. Can you tell us a little bit more about that and how you stay active?

Joel Aguilar  06:59

I was very active prior to that, and throughout my 20s, and my fitness declined quite a bit. After that, I’ve been able to ramp up significantly to the point where just a few years ago, running in Colorado is where I had lived for 25 years. I was doing back-to-back weekends of 30 mile plus mountain runs. In fact, one day, I did a Tough Mudder 10k, followed up by 32 mile run like solo, like unsupported. With plantar fasciitis, running was never gonna be an option. I played soccer in high school, and that was out of the question up until then. And now, I don’t take it for granted at all: I work out five to six days a week, usually run two to three, and what’s helped me? I do have some off days still. It’s not often, but heat is my friend, staying warm. When I get stiff and it’s cold out, I just move my body, it helps. I’m usually pretty active, I don’t sit down and watch TV; I just go, go, go, and that seems to be also a big help as well.  That’s a good point, because you don’t feel like it for sure, when you get out of bed and you’re stiff and cold, and you step down first steps, or like your feet are swollen and everything hurts and all that. But it’s like, I think of it like a car motor; it always works when it’s hot; it stinks when it starts cold, but if you can get it warm, you’re going to be in good shape, but you got to get there. And sometimes you just got to be stubborn and just start moving, and then everything starts working. Instead of going with what you feel like you know what you should be doing and just do it.

Zoe Rothblatt  07:59

It’s so interesting because it almost feels like counter intuitive, right? Like your body hurts and you’re like, “I kind of just like ache and want to rest.”But in reality, with arthritis, like getting those joints moving is something that really helps. So, what do you have to say to kind of, like getting over that mental hurdle and getting yourself started with working out?

Joel Aguilar  08:17

And do you have, like, a routine that helps keep you, I guess, like, focused or on the path to working out? My memory of how I used to be in all the years that I couldn’t do it, I’m still trying to catch up.

Zoe Rothblatt  08:55

Yeah, for sure.

Joel Aguilar  08:56

I’m just grateful – that’s the bottom line.

Zoe Rothblatt  08:58

Yeah, how, I guess, like, going into that feeling of grateful, like, can you tell us a little bit more about that? Like, how has your life just turned around, from working on your fitness and taking this treatment? Like, what are you able to, now, do that you weren’t before?

Joel Aguilar  09:12

Just about everything, and more than somebody my age could do. My only real limitations are my hand strength. It went away, I still haven’t been able to develop it, and I’m almost really not willing to risk trying to increase it, because my joints, you know, there’s still, even though the pain is resolved, the swelling is resolved, I think I still have some underlying issues I have to acknowledge and be just mindful of. But, um, my real fitness like level is higher, I think, probably quite a bit higher than anybody at my age, and my focus daily is just about doing the most I can. Helps a little bit, I have 15 month old twins; twin girls that they want to move, they want to do something – I have to do it. Changing diapers is a lot of dexterity, picking them up, they’re both around 30 pounds, that’s a lot of work, and I still have six plus acres of a ranch to work on daily, and I’m the only grounds keeper. So, there’s a lot to do.

Zoe Rothblatt  10:02

Yeah, I think that’s great advice too: just like finding the movement in everyday life too. Like, sometimes it doesn’t have to be a big workout. It can just be, like you’re saying, picking up your kids, or working on your lawn, like it can be even, I know patients sometimes say, you know, my goal today is to walk to the mailbox and get the mail, and that could happen on a slower day, but really, like, finding activities around the house can be a great way to get started into fitness.

Joel Aguilar  10:28

That’s right, because I do believe we lose a lot. Even with normal people that have no conditions, lack of activity leads to a quick decline. So, I think with people that have these autoimmune type things that are like, especially with arthritis component, you have a lot of excuses to not move because it hurts. I think it’s, you’ve got to do something extraordinary just to be normal at that point. And it’s just, you have to be stubborn, and have a strong will, and then just do it every day.

Zoe Rothblatt  10:55

Exactly, it’s that self-advocacy that’s so important. I want to go back to something you touched on earlier. How in the beginning of your journey were like paying a lot out of pocket and weren’t really taking advantage of the full health insurance benefits that you had through the VA. Can you talk about when you discovered those benefits, and how that’s impacted your journey?

Joel Aguilar  11:16

I’ve been self-employed for most of 30 years, so I had my own health insurance coverage. And of course, there was some limitations to that. And I ran into someone in my little town in Colorado that happened to be the person that enrolled people in the VA medical system. And somehow my history came up, and he said, “Why haven’t you been enrolled?” And I said, “I haven’t talked to anybody about this since I left in 1993, so I have no clue what my rights are to any kind of compensation or benefits.” So, he helped me out, and lo and behold, I have 100% coverage. And at that point, even being in a remote town in Colorado, my main hospital was in Albuquerque, which then obviously limited my ability to go see people, so I didn’t really take full advantage of it for a few years. Once I figured out the system, it’s been amazing, especially the last probably eight years has improved a lot, and there’s programs for people that live remotely now. Community cares allows you to access your own private doctors through the VA system, if they can’t service you quickly, so there’s no long waits anymore. A lot of times, you can pick your facility, your own doctor, and the VA will pay for it if they can’t service you quickly, and to your satisfaction. It’s two things: it’s really good, right now

Zoe Rothblatt  12:33

That’s so cool, and yeah, I learned about this in our first conversation, right? You said, if it’s more than 30 minutes away from you, the nearest VA facility, you can choose into, like a private provider, closer, right?

Joel Aguilar  12:46

Yeah, it’s something like that. It’s a mileage and also a time if they can’t service you within, I think it’s like 20 days, and it’s too far away, which is, I think, 30 miles, or something like that. I’ve only ran into it about half the time where the VA can’t service me with either one, the proximity or the time period. Um, at that point, it’s immediately offered: “Would you like to find your own doctor? Let us know which ones you’d like to see. If they’re in our network, you can freely see them,” and most of them are. It’s been pretty easy.

Zoe Rothblatt  13:14

That’s amazing. I mean, yeah, that makes such a difference. Like, when you’re in pain, the last thing you want to do is go far or wait a long time. It’s so important to have these options. I’m wondering, you know, you mentioned that your friend was the one that said, “Hey, check out the VA benefits.” Like, how can others get started? Let’s say other people don’t have that friend. That’s like nudging them to get it. And they’ve, you know, done service, how can other people look up these benefits and get started?

Joel Aguilar  13:38

The best way, I think, would just be go online and look up a VA, there’ll be 100 number, and you likely will get a quick response in some direction. They’re very responsive, and typically, when you go on any of their sites, they can direct you right where you need to go pretty easily.

Zoe Rothblatt  13:53

Amazing, thank you. Yeah, I think there’s such a misconception, at least, like, I haven’t been in military service ever. But I’ve heard from others that the VA can be slow and long wait times, etc, and it’s so, I don’t know, just like eye opening and encouraging to hear from you about the experience that you’ve had, and you said it’s really turned around in the last eight years. So, I think that, you know, I asked you that question about, “How can others get started?” To say to others listening that even if you think you’ve heard it’s long wait times, like call and find out, and just try and make that appointment. Because, like, Joel, you’re saying you just tried, and now, you all of a sudden, you have all these great benefits. And it’s such an important note of advocacy in your journey to say, like, “I’m not going to give up, and I’m going to keep, you know, fighting for the health care I need.”

Joel Aguilar  14:37

Absolutely, I encourage anybody to inquire about that if you have done your service.

Zoe Rothblatt  14:41

And you know, finally, before I let you go, what advice do you have to give to veterans or others with chronic illnesses, who are kind of like struggling to get a diagnosis or access to care? Like thinking back to those early days when you were just going around from appointment to appointment, like people are in that situation now, what would you say to them?

Joel Aguilar  15:01

I would say, if you’re as miserable as I was, “Don’t give up.” There’s obviously different degrees, unless you’re in somebody’s body, and know the level of pain, discomfort, and misery, that’s gonna either motivate you to go do something or put you on the couch the rest of your life. And I hope everybody gets up and does something about it, and find the person with the answer; there’s gonna be somebody with an answer.

Zoe Rothblatt  15:22

I agree there’s someone with an answer, and in the meantime, you know there’s people like us out there thinking of you, and just know that you’re not alone in your journey.

Joel Aguilar  15:32

Absolutely.

Zoe Rothblatt  15:32

Well, thank you, Joel, so much for joining us on “The Health Advocates” and sharing your story with our listeners. And, especially, thank you for your service.

Joel Aguilar  15:40

You’re welcome, Zoe. Thank you for your time.

Steven Newmark  15:42

Wow, what a story. Thank you to Joel, and you know, thank you, Zoe, for that great discussion. Joel’s story of perseverance and self-advocacy – It’s really inspiring. So, thank you.

Zoe Rothblatt  15:52

Absolutely, it really goes to show, you know, like it’s never too late to get a diagnosis, to get on treatment, because it really can help, and you’re not alone if you know you’re out there struggling in pain, like you have a community rooting for you.

Steven Newmark  16:06

Well, with that, we want to encourage everyone to check out all of our podcasts and hear other great stories, like Joel’s, at ghlf.org/listen

Zoe Rothblatt  16:14

Well, everyone, thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen.  I’m Zoe Rothblatt.

Steven Newmark  16:27

I’m Steven Newmark. We’ll see you next time.

Narrator  16:33

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:27

And today, we figured, with the change of administrations, we thought it’d be a good time to look back on the Biden presidency, and notably his achievements in the area of health policy relevant to our listeners with chronic disease.

Steven Newmark  00:40

Yeah, love him or not, Biden did do a lot in the health policy world that deserves mentioning as he exits stage left, so to speak. So, let’s get into it. There are probably three main areas where the Biden presidency was felt in the health care realm. I mean, there’s a lot more we could discuss, but we’ll stick to the three biggest that he did, which was COVID-19, opioids, and the Inflation Reduction Act.

Zoe Rothblatt  01:02

Yeah, COVID, that’s a big one. I mean, just like, think about where we were four years ago. It’s January 2025, we were January 2021, I guess, like we were just on the cusp of getting vaccinated. People had started to get vaccinated, health care workers, COVID was raging, we were still wearing our masks, very worried about what was going to happen, especially our community who’s immunocompromised, the elderly. It was amazing to finally have you know the success of the vaccine.

Steven Newmark  01:28

Yeah, no, absolutely. President Biden took aggressive actions against COVID-19. Most notably for the mass vaccination campaign. It was a pretty comprehensive report done by the Commonwealth Fund that estimated that based upon the mass vaccination campaign, getting the shots in arms, as we called it back then, we saved an estimated 3.2 million American lives, which is worth celebrating, to say the least.

Zoe Rothblatt  01:49

Absolutely. And you know, as we talk about this too, an important part of this was President Trump and Operation Warp Speed to get the vaccines to develop them. But we do know that the vast majority of injections was an undertaking during the Biden administration. So, thank you to the administration for saving what you just said, an estimated 3.2 million American lives. That’s like the best data you can have in hand, especially now as we’re combating a lot of misinformation and declining rates of vaccines. It’s important to highlight that.

Steven Newmark  02:21

Yeah, I know, definitely. Within just a few months of taking office, I think, as my recollection is correct, nearly all eligible Americans were vaccinated. Not everyone took one, but all, you know, within a relatively short period of time, we were all at least had the ability to be vaccinated, and most of us were. And perhaps just as important, development of vaccines continued, so that boosters could be ride it in the coming years as needed.

Zoe Rothblatt  02:43

Absolutely. And just taking it to today, we are in an entirely different place, a much better place. While COVID is still a threat and circulating it is definitely different than how we were in January, 2021, and for the better.

Steven Newmark  02:58

Absolutely. So, moving on from COVID. Let’s talk a little bit about opioids. Not a subject we talk a lot about here, but certainly a crisis that has afflicted much of our nation for quite some time. When Biden’s term started four years ago, the number of overdose deaths was skyrocketing at 31% a year. The administration’s overdose prevention efforts contributed to a reversal in that the CDC reports that the year ending last June, the fiscal year ending last June, saw a 14-and-a-half percent decrease in overdose deaths. That’s the single largest recorded reduction in US history. That’s also the first time since 2018 that the country has seen a decline.

Zoe Rothblatt  03:35

Yeah, so let’s dive into this. Like, how did we get to this reversal? What actions did the administration take?

Steven Newmark  03:41

Yeah, I think one of the most important actions that they took was to make Naloxone, which is an opioid overdose antidote, available over the counter. That’s a really, really big deal. Essentially, you don’t need a prescription to obtain and carry around with you. Essentially a medication that can be injected or, I think it’s through a nasal spray when someone is having an overdose, so loved ones are able to simply go to your local pharmacy, pick it up, and just have it on hand as needed, and not necessarily rely on emergency medical services to appear on time. And that has surely contributed to the decrease in deaths, which is a big deal.

Zoe Rothblatt  04:17

Absolutely. I mean, you know, no one ever expects that they’re going to be in that scenario where they’re going to need, you know, a fast-acting antidote like Naloxone, and just being able to have it in your purse, in your pocket, readily available, without the extra barrier of getting a prescription. Like, you can just imagine how often you have stuff going on, like, you’ll say, oh, you know, maybe if you’re interested in getting one, but you would delay it, and now it decreases that I gotta do all these steps, and there’s all these barriers. You could have it, and if, God forbid, you’re in a situation, you can administer it easily. Like you said, it’s a nasal spray.

Steven Newmark  04:50

Yeah. The administration also removed roadblocks to treatment access. For instance, a long-standing requirement for providers to obtain a license called an X waiver to prescribe a highly effective medication used to treat opioid addiction made it difficult for people to find doctors, who could prescribe this very important treatment. So, two years after Biden lifted this what I would argue unnecessary requirement to obtain this waiver, the number of eligible clinicians went up 15 times. So, that’s a pretty big deal.

Zoe Rothblatt  05:16

Yeah, I think, you know, overall, these are just really good examples at taking a look at how we currently structure and do things, and thinking about how to eliminate barriers to just make treatments and access to care more easy for people to get to.

Steven Newmark  05:32

Definitely. Speaking about access to care, the administration also made permanent some telehealth provisions that made care more accessible and changed regulations to allow people in jails and prisons receive addiction treatment, which was helpful. If you’re able to recover while incarcerated, when you come out, you’re less likely to obviously have an overdose death, and perhaps almost as critical, was decreasing supply. The US seized more illicit fentanyl at ports of entry in the last two years than in the previous five years combined. So, that’s a pretty impressive feat, and it’s good to see those who paid any attention to the opioid crisis know the dangers of fentanyl. We won’t get into the details of that, but stopping these at ports of entry has been a really big deal.

Zoe Rothblatt  06:11

Absolutely. And last on our list, we have the Inflation Reduction Act, the IRA. I’m pretty sure we’ve done some episodes on this. We won’t dive too deep, and while we know that there’s challenges with it, we also know that there’s a lot of great stuff for patients in the IRA as well.

Steven Newmark  06:27

Yeah, absolutely, this was to quote President Biden, “A big effing deal,” and it has some provisions that we might have quibbles with. But you know, it is a big deal on the health care system as well as in other areas too. Some of the positives to highlight, Biden fulfilled the campaign promise to cut prescription drug costs for seniors. Specifically, the IRA contains provisions to make it easier for older adults to afford medications. And the most notable is a cap on out of pocket spending for those enrolled in Medicare, Part D.

Zoe Rothblatt  06:57

Yeah so, previously the annual cap was $3500 and now it’s $2000. So, this means that people, in part D, will not be paying more than $2,000 a year for prescription drugs. This is like a huge benefit to patients. I mean, we talk about people’s chronic disease, you’re chronically paying, so to be able to have that reduced, to get access to your medications, and, you know, maintain your quality of life because you have these medications at, you know, a capped cost is really important to patients, and a lot of mental relief as well.

Steven Newmark  07:29

Totally, the average Medicare beneficiary takes many drugs. Folks on Medicare are either over the age of 65 or older or living with a disability. So, these are folks who are likely taking multiple drugs, and to have that, if they’re in the Part D program, to have those capped at $2,000 a year is quite a big deal.

Zoe Rothblatt  07:46

Absolutely.

Steven Newmark  07:47

In fact, I just want to say I personally spoke with a woman, who broke down in tears when she realized she would no longer, in her words, have to choose between taking medications and bankrupting her family. So, that’s just a real world example of what legislation can do for people? Definitely. And of course, there are other parts of the bill that we believe have good intentions, but may not necessarily in order to the benefit of patients. For example, beginning in 2026, Medicare will begin to negotiate the prices of some drugs with manufacturers, while this will save Medicare, in other words, the federal government money, this will also have the consequence of reducing incentives for manufacturers to develop new drugs, which could result in lost opportunities for millions of patients.

Zoe Rothblatt  08:01

Absolutely. Yeah, I mean, it’s terrifying to have to choose between pain and your daily quality of life versus your financial health, and no one should be in the position to do that. So, it’s really good to see that the Biden administration took steps to reduce that impact. And then another one also with, you know, capping the price of medication. So, the IRA included a provision for Medicare, Part D plans to charge no more than $35 per month for all covered insulin products, and it also limit cost sharing for insulin covered under Part B for $35 a month. And you know, this is a huge relief. We’ve seen how insulin prices have skyrocketed and become really unaffordable for people. Diabetes is really not an option to not take insulin, so it’s important to make this as affordable as we can. Exactly. You know, drug savings sounds good, but sometimes it just doesn’t trickle down to the patient like you’re saying. It’s not really clear how that impacts what the patient is paying, and if it also impacts drug development in the future, that could end up harming the patient. So, I think there’s another one of those examples where it’d be helpful to have more transparency on how these laws go down to the patient, because that’s what we’re always advocating for.

Steven Newmark  09:35

Absolutely, absolutely not to go too deep on the IRA. But look, we’re taxpayers, and I would love for the government to save money as a taxpayer, but I do have a personal stake as someone who badly seeks the development of new drugs, seeks, if anything, increased budgets for research and development, particularly for drugs that our community relies on, biologics as we you know, it’s not uncommon. In fact, it’s very common for folks to be on biologics for them to work, and then the need to switch to different medications. So, the more advances that can be made, the better it is for patients. And anything that curtails that is troubling to say the least, particularly when the benefit on the flip side is not going to be a direct patient impact.  Absolutely. And you know, we have the inauguration coming up. So, we are expecting the health policy landscape to change with the new administration, but as always, we will stay on top of it and let our community know what impacts you and how to advocate. Yeah, just a reminder of what you can do in 2025: join the GHLF 50-state-network to lend your voice to key issues. Stay informed through our newsletters, webinars, and advocacy updates, and share your story to inspire change and highlight real patient experiences. You can email us at [email protected] to get involved. Well, Zoe, thanks as always, for another great discussion. As we look to 2025 and beyond, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  11:04

Well, everyone, thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  11:15

I’m Steven Newmark. We’ll see you next time.

Narrator  11:20

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.

Zoe Rothblatt  00:18

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:22

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:28

Yeah, and Happy New Year, listeners. Today, we decided to kick off the new year with our interview with Nitika Chopra, she’s a really strong advocate from the community, and I’m excited for you guys to have a listen.

Steven Newmark  00:40

Yeah, Happy New Year, Zoe. 2025, we made it, all right. So, as you said, it’s a great way to start the year is by talking to one of our friends. Nitika Chopra, is the pioneer in force behind Chronicon, a renowned media and events conglomerate dedicated to empowering individuals living with chronic illness. Nitika’s own health odyssey began at a tender age with a diagnosis of psoriasis at age 10 and psoriatic arthritis at age 19. These conditions became defining aspects of her life for over 17 years, inspiring her to transform her experiences into a catalyst for change. I can’t think of a better way to start the new year than, as I said, talking to a fierce advocate, such as Nitika.

Zoe Rothblatt  01:16

Awesome! So, let’s get started.

Steven Newmark  01:19

Welcome Nitika. Thank you so much for being here today. We’re really excited to introduce you to our listeners. So, why don’t we start there? Can you start by introducing yourself, and give a little bit of your background?

Nitika Chopra  01:30

Sure. Well, thank you guys so much for having me. I was so happy to be here and yeah, my name is Nitika Chopra, and I am the founder and CEO of Chronicon, and the president of the Chronicon Foundation. I started Chronicon in 2019, and have been living with chronic illnesses for over 30 years, and it’s a passion that I don’t think I’ll ever stop being passionate about. So, I’m excited to be here and talk to you.

Zoe Rothblatt  01:53

Awesome. Yeah, welcome to “The Health Advocate,” and maybe let’s start there with your personal health journey. What was that like for you, and how did it inspire you to become, like, a chronic illness advocate?

Nitika Chopra  02:03

Yeah, well, I got diagnosed with psoriasis at the age of 10, which is an autoimmune disease, a skin disease, and a decade later, ended up getting psoriatic arthritis. And I never thought I would be talking about my health in this way; I never thought that this would be a part of my work. I, you know, growing up, we didn’t have the internet for most of the time I was growing up, so it’s not like I was on Instagram at like, 10 years old, looking at “(The) Health Advocates.” I was just kind of dealing with it on my own, and I was the only person in my family, who had gone through this kind of thing with their health, in terms of with their skin and things like that. So, I felt really alone, and I felt like I was the only person in the whole world that had, kind of, condition. And it felt very real, like that was my truth for a really, really long time. And then I would say, when I was in my mid 20s, mid to late 20s, I had moved to New York, and I started to meet people, who were writing books, and writing blogs, and life coaching, and doing all this stuff that I had never heard of. I mean, writing books, of course, I had heard of but I never met a person, who wrote a book. Obviously a very hard thing to do, but anyone can decide that they want to write a book. And I didn’t even know that people could do that. So, I went through this whole journey of starting a company, writing a blog, going on TV, doing a lot of stuff in media. And then I would say in like, 2016, 2017/18, like, a lot changed in this country in particular, and it really just had me, like it pushed me to say, like, okay, I was talking about skin care and wellness at the time, and I liked it, but it wasn’t really getting to the depth of what I wanted to get to. And I was just kind of yearning to figure out what that was gonna be, and I thought of Chronicon throughout that process. So, yeah.

Steven Newmark  03:48

I have a very specific question, do you remember the first time you ever met another person with a chronic condition?

Nitika Chopra  03:53

Well, that’s a good question. So, my grandmother had myasthenia gravis, which I actually got diagnosed with but after getting really bad case of COVID, in 2021. And I’m in remission from that now, but she was the only person that I really knew that had a chronic illness. Myasthenia gravis is a rare neuromuscular disease; a lot of people think it’s MS at first, like, there’s a lot of similarities to how it shows up. And so, she had gone through tremendous difficulty with her health; she had a tracheotomy to speak out of through her throat; she had bypass surgeries; she was on a respirator. It was really intense, but it still felt very separate from what I was going through, because I was a kid in school, I was trying to date, I was also dealing with something that was so, it was visible in a very different way, because my whole body, like 98% of my body, was covered with psoriasis for about 17 years. So, it’s just like a very different social experience, because I was meeting people and trying to put myself out there for sort of the first time in my life, where she was already married and had her three kids. And it was like very different of course, also. Incredibly hard, but just in very different ways.

Zoe Rothblatt  05:02

I find it so relatable. What you said about just like you didn’t know, like, “Oh, these are real people that can write books.” Like, even meeting other people in the chronic illness community. You’re like, “Oh, wait. Like, it’s just a girl you like me,” and like, right before us we were chatting about our hair. It’s like, you think you’re so alone in this journey, and then you start connecting, which makes me want to ask you more about Chronicon and the events you’ve hosted. You talked about, you know, finding your voice and thinking about Chronicon and what that looks like. Can you, like, tell us a little bit more about what that looks like today?

Nitika Chopra  05:32

Yeah. So, Chronicon started as a large in person conference. We had hundreds of people at the first conference and 1000s of people online, and it was really, like a very surreal experience in so many ways, because I had this idea I had been doing events. I had never done a conference before, but I had been doing events for a long time, for about 10 years before I started Chronicon. And I had done these events called self-love celebrations, and I had done, like workshops and stuff, but they were, you know, just like hangouts, like parties, like, these are, like, really fun with hundreds of people still, but they weren’t, like this huge endeavor in the same way. And I was so nervous, I did not know if a single person was going to want to come to a conference about being chronically ill. I was kind of like, “Who would want to come to the? I want to go, but, like, I don’t know if anyone else is going to want to go.” And we sold out, and it was just remarkable, like we had people upset that they couldn’t get a ticket, and I was just like, “I didn’t know I needed to book a bigger venue. Okay, next time I will.” So, that’s how it started, and then a few months later, the pandemic started, and it was obviously a shock to all of us, and being immune compromised myself and being in the community with people, who are being compromised. It was another level of intensity, I think, for a lot of us, and I know for myself for sure, so I had to do a lot of soul searching and figuring out what this could look like. We built an app; we have a community online, and so, we gather there virtually, and we still do that every week; I host workshops in the app, and our community leaders host workshops every week as well in there, which is great. And then we did a live conference in 2023, is like our kind of comeback through the pandemic. And then this year, in 2024, we ended up doing a tour, which I actually really love. I think that’s what we’re gonna do in 2025 too. I’m gonna do two tours, and one in the spring, one in the fall, and I loved it because as someone with a chronic illness myself, who, I have two chronic illnesses, one in remission, and it’s a lot of output for me to put on a conference and, like, manage everything, and I really do most things pretty much by myself. So, I wanted to do something, where I was able to give a lot to the community and create that impact, make sure people could still get together and feel that support, but not burn myself out at the same time. And I feel like it’s also important to be that model for others, because a lot of times with chronic illness, you’re kind of told, well, that’s kind of it, like you can only do certain things. You can’t do it all. So, finding that way to do the work in a way that also serves me, has been really important.

Steven Newmark  08:03

Yeah, in creating Chronicon, was there any particular moment that you look as sort of like that “Aha moment,” or the most rewarding thing, like “This was great. It was a lot of work. But oh man, I feel it?”

Nitika Chopra  08:15

Yeah. I mean, I think just after the first conference, I was just in shock for, like, months, I think after, and sometimes I still am in shock of just like what happened in that first conference, and what continues to happen from then. But I just remember people from all over the world came to the first conference, and we just had people, who were so emotional and feeling like they had met their people, like they finally had friendships like they’ve never had before, just so many layers to how meaningful this had become for them. And again, it was just like something that I thought of because of something I went through. I didn’t think that it would have like that big of an impact. It was just like what I wanted to do and what I thought I needed. So yeah, that first conference, I think, was like, the biggest “Aha moment.” And then I think, honestly, just like creating the conference, like I had this whole moment when I decided to do Chronicon. I was walking around another conference called Curvycon, and my friend was modeling there, and I was like, “Okay, I’ll come with you. Like, check it out.” And I had this experience because I was in that mode of searching, of like, “What is this next thing I’m supposed to do? I don’t really know.” And I watched all of these brands like, celebrate the people in the conference, like the women and the individuals who were there with curvy bodies. No brand was like, “Oh, you can only come to our booth if you change. You need to be smaller or look different.” They were all like, “Come over here with all of your curves and all of your beauty and exactly how you are,” and it was just this way-I’m getting chills as I say it- because it was just this magnificent moment for me, because I thought, “Wow, if I at 10 years old, 15 years old, went to a conference that was like, ‘Come over here with your flaky skin, we couldn’t, like, show you how accentuate your eyes, even though you have psoriasis all over your face, or we’re gonna, like, show you how to, you know, feel confident in the clothes that you’re wearing, even though your skin is falling apart underneath them, whatever it is, my whole life would have been different.'” And I think I just had this moment, and I was walking around that conference, and I started, I’m a very spiritual person, so I started talking to God, and I was just like, “Okay, God, that could be something, but like, what would it be called?” And I just started kind of having this conversation, like a spiritual conversation in my mind. And then I thought of the name Chronicon, like, as I was walking around the conference. So that, to me, was like the chrysalis moment of like, “Oh, my God, there’s something here. It’s even bigger than I think I probably understand, and I hope I can do it justice, you know?” I hope I can honor it, is really how I feel.

Zoe Rothblatt  10:47

Well, yeah, I mean, thank you for leaning into that feeling, because what you’ve built is incredible. And I think, you know, like I have two chronic illnesses, and just speaking with others with chronic illness, it’s exactly what you’re saying; you just instantly feel a level of connection and support that you don’t necessarily have in other places. You know, my friends and family without chronic illnesses, they’re really supportive, but there’s just such a deep, immediate level of connection. So, for you to say it’s a whole community here that can feel that together and rely on each other for support, I think it’s just such a remarkable thing to do. So like, yeah, just thank you for leaning into that feeling and building it, because I know it’s not easy.

Nitika Chopra  11:27

Thanks, Zoe, that’s really sweet. Yeah, I think it’s just like what we need, and I hope that I can continue to grow it and again, do it justice. But yeah, it was kind of like one of those things where it’s like, you can’t not do it. It was just, like, so loud, so strong. I was like, “Okay, here we go. I have literally no idea what I’m doing, and we’re doing this anyway.” So, it was, it was definitely, it’s been a journey, but it’s been great.

Steven Newmark  11:51

Yeah, what changes have you seen in terms of being a patient advocate? You talked about starting it before COVID And then after COVID? So, what changes have you seen?

Nitika Chopra  11:59

I know this probably isn’t true, but I would say for me, I didn’t know any people talking about like living with a chronic illness before, like in 2018/2019, I felt like it was so much more rare. And now, I find that I’m seeing a lot more people, who don’t necessarily consider themselves like patient advocates, but they’re leaders in their own work that they’re doing, and they’re also coming out with the fact that they have chronic illnesses and how they’re managing it, or that they’re struggling with it. And I never saw that before, and I remember, like, one of my first posts about living with a chronic illness, where it was, like, really focused on the chronic illness aspect, whereas before that, I had kind of hidden my conditions, like on my “About Page,” or, like I would say it in the interview every once in a while, I wasn’t ashamed of it, but I didn’t want it to become my identity. So, that was a huge thing I had to grapple with for a while. But, yeah, I just really did I remember that post because I really felt like it was a big deal, because people weren’t really talking about it so much. Now, I feel like I go on Instagram or Tiktok, and I find so many people are talking about these things and in their own unique way, and like, there’s just a variety that I never saw before, which I think is great, because not everyone’s gonna resonate with the way that I talk about chronic illness, and not everyone’s gonna resonate with the way that you guys talk about it. And there’s hundreds of millions of people out there, who have a chronic illness, so it’s like there’s enough people to try to reach.

Zoe Rothblatt  13:25

And in thinking about that uniqueness and different voices, we know a lot of marginalized communities are disproportionately affected by chronic illness, but also aren’t necessarily the people being uplifted or presented with opportunities. Can you talk about any advice you have for, you know, uplifting those voices, or how you’ve done so through Chronicon?

Nitika Chopra  13:46

Yeah, that’s a beautiful question; thank you for asking that. As a woman of colour myself, I think just like having the courage to speak out when it’s not, first of all, it’s not culturally very accepted, as a South Asian woman, and I know a lot of people out there, who come from certain cultures, they really grapple with that. I have been a firecracker since I was like two years old; I’ve just kind of done what I need to do. And I’ve always been like, “It’s really not about me, it’s about something bigger than me. So like, You got to get out of my way, and I’m gonna do it anyway.” So, my Indian parents are pretty well-versed in, you know, my like ambition in that way, but I’ve talked to a lot of, specifically, South Asian women, but I think this runs across so many different cultures, who really grapple with that. So, I think, you know, that’s something I think about a lot, just having that courage, but also having that grace for yourself and that compassion for yourself as you try to use your voice. It’s not something that we’re taught to do in a lot of cultures and in a lot of marginalized communities. And I think it’s just important to have that awareness as you’re navigating it. I also think, I mean, I know, for me with Chronicon specifically, I am so passionate about every single panel at our conferences having a diverse group of people. It’s like the thing that honestly, like, keeps me up at night when I’m like, producing the conference, it’s like, I will not rest until every single panel has as many marginalized communities, like represented as possible. And it’s only a challenge sometimes, because, again, those people are not always encouraged to speak and use their voice, right? But it’s not impossible to do, and I feel like it takes a little bit more effort, but it makes a lot more of an impact. And so, I think more and more companies and communities need to be, like, fighting for that. It’s imperative. It’s kind of how people say, like, with accessibility, right? Like, accessibility shouldn’t be an afterthought. There shouldn’t be an afterthought that like, “Oh, you need to have an ASL interpreter. If there’s a stage, you need to have a ramp and things like that.” And that’s how we treat accessibility with Chronicon too. But I think in showing diverse voices, in showing diverse perspectives, like that’s been a huge part of what we do as well, and it should not be an afterthought. So, I hope more people really take that into consideration as they build out content and communities going forward.

Steven Newmark  16:04

Well, you actually answered my question, I was going to ask if there’s one takeaway for our listeners, but I think that that what you just said, really encapsulated what that might be. So, I’ll go to the next question. Where can we follow and get involved with Chronicon? Where can our listeners follow along?

Nitika Chopra  16:19

Yeah, check us out on social media, especially on Instagram is where we’re the most active @Chroniconofficial, and you’ll see our green and pink logo there, so you should be able to recognize us. We’re gonna be doing, you know, as I said, a spring and a fall tour, in 2025, so definitely just follow us, and we’ll be promoting that and sharing about that on our Instagram.

Zoe Rothblatt  16:41

Awesome! Well, thank you so much Nitika for joining us today. We look forward to, you know, seeing all that you do in 2025, and beyond. And I just, I guess, want to reiterate that thought that you said that accessibility and uplifting voices shouldn’t be an afterthought. It should just be ingrained from the start. I think that’s so powerful, and, you know, I’m hoping we can continue working together to make that happen.

Nitika Chopra  17:05

Yeah, you too. Thank you both so much. I love chatting with you.

Steven Newmark  17:08

Thank you so much, Nitika.

Zoe Rothblatt  17:09

That was a lot of fun, Steven. It’s always great talking to an advocate and just, you know, learning more about Nitika’s story and how she got to where she is today.

Steven Newmark  17:18

Totally! Great way to start the new year. I’m excited for 2025 definitely. Before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  17:30

Well, everyone. Thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you like this episode, give us a rating, write a review, and hit that subscribe button, wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  17:43

I’m Steven Newmark. We’ll see you next time.

Narrator  17:49

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week to Help you Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation (GHLF).

Zoe Rothblatt  00:17

And, I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:28

And today, for our last episode of the year, we’re gonna take a look back at 2024 and what’s ahead for 2025, when it comes to health policy and advocacy.

Steven Newmark  00:37

And we’ll start off by thanking our listeners. We’re so grateful to all of you for tuning in.

Zoe Rothblatt  00:41

Yes, thank you listeners. I really can’t believe we’ve arrived at our last episode for 2024.

Steven Newmark  00:48

Well, let’s start by talking about some of the legislative victories that we’ve had, in 2024, these are victories that are really for all patients. But we’ve been involved in these efforts, and we again, thank each and every one of you for all that you do on behalf of patients.

Zoe Rothblatt  01:02

Yeah. Thank you so much to our community. Shout out to our 50-State Network. You know, without you, this wouldn’t be possible. We talk all the time about like, how resonating a story is, and just hearing first-hand testimony from advocates really does make a difference. So, let’s go state-by-state, I guess, for our successes for the year.

Steven Newmark  01:20

Yeah, well, it’s not all 50-states, but we’ll go through some of the high level stuff. So, Oregon and Vermont became the 20th and 21st states, and as well as Puerto Rico, to pass laws banning co-pay accumulator adjusters from passing on financial burdens onto patients, while the federal “HELP Copays Act” continues to gain support in both the House and Senate.

Zoe Rothblatt  01:39

Yeah, it’s exciting to see the “HELP Copays Act” gain support. And of course, we always talk about, like, it’s almost a little backwards that the states are passing laws before federally, but it does help make a case when we go to federal legislators to say, “You know, states are passing these bills. This is what’s happening.” It helps us gain momentum. So, great to see Oregon, Vermont, and Puerto Rico doing this.

Steven Newmark  02:01

Absolutely and a special thanks to our GHLF members, who have been active in those states, working, and advocating to their elected officials to make this a reality.

Zoe Rothblatt  02:11

So, what’s new for step therapy this year?

Steven Newmark  02:13

Well, Illinois, Vermont, and Wyoming joined 25 other states in passing protections regarding exemptions and other step therapy protocols, which means that over half of the country now has these protections in place. On the federal side, the safe step act now has over half of the U.S., the current U.S. House of Representatives, signed on as a co-sponsor, meaning it is closer to passing than ever before.

Zoe Rothblatt  02:33

Yeah, it’s exciting to see that over half the states have stepped therapy protections. These issues also span across diseases, so it impacts a large portion of patients. I know we’ve been doing a really big push at the federal level for the safe step act, and like, feel really hopeful about it. It’s also think about that compared to “HELP Copays Act” that we just talked about. It’s like step therapy is a little bit ahead in the process. So, I think if we could see that pass, it would bring, like, a lot of hope too, for “HELP Copays Act.”  Turning to another issue, non-medical switching; This is when an insurance plan as it exactly written, non medically switches a patient. So, in the middle of the plan year, they might say, “Hey, we’re not covering your drug. You have to take this one instead.” So, in Iowa, we saw a big win with the passage of non-medical switching. Iowa also, along with a few other states, like Colorado, Connecticut, Florida, and Pennsylvania, pass legislation mandating coverage for biomarker testing, which we hope that this reduced times it takes patients to find the right medication.

Steven Newmark  03:33

Absolutely. Yeah, absolutely. This year was also a major focus, for our advocacy team, was on state prescription drug advisory boards, or PDABs, as we’ve called them, and the upper payment limits, or UPLs. Gosh, so many acronyms.

Zoe Rothblatt  03:44

Yeah *laughter

Steven Newmark  03:45

Anyway, that these PDABs might set for commonly used medications in their states. At GHLF, we were a regular presence at meetings in Colorado, Oregon, and Maryland.

Zoe Rothblatt  03:54

Yeah, this was a great opportunity for patients to get involved in a new advocacy issue. We’re seeing them pop up around the state. So, it’ll definitely be a priority in 2025 and you know, we were also successful in opposing authorizations on PDABs with upper payment limit authority, in Rhode Island and Virginia this year. It’s kind of a mouthful, but, you know, we have an episode on PDABs, if anyone wants to go back and take a listen. But ultimately, you know, our goal is always just, like, how patients have access to care that is affordable.

Steven Newmark  04:27

Exactly! Very, very well said! With that, we couldn’t do this without our advocates. So, again, a big thank you. It’s as you said earlier, Zoe, it’s your stories and testimony that makes these legislative successes possible.

Zoe Rothblatt  04:39

And just to shout out our advocates a little bit more, I pulled some numbers from our advocacy over the year. So, we did over 750 calls to legislators and sent over a 1000 emails. Thank you, Advocates. At the state level, we had 75 meetings or testimony, and 35 at the federal level, and this is including with our coalition partners. So, just like, shout out to our coalition partners, like Obesity Action Coalition, the Digestive Disease National Coalition. We’ve had a lot of great times, you know, just connecting with the community to advocate this year.

Steven Newmark  05:14

Yeah, that’s what we do. But unfortunately, there’s no time to rest, I mean, let’s rest a little bit over the holidays, but 2025 is going to be a doozy, to say the least, in the world of patient advocacy. But because of you, we’ll be able to keep fighting the fight. So, let’s talk about what we’re looking ahead to 2025. Let’s start with the state level, Zoe.

Zoe Rothblatt  05:31

So yeah, at the state co-pay accumulators will continue to be, you know, major concern. We see that there might be potential movement in Nebraska, New Jersey, Tennessee, Texas, Utah, and Wisconsin. So, you know, listeners, if you live in those states, email us [email protected] and if you want to get involved in any of these issues that we’re talking about.

Steven Newmark  05:53

Absolutely. Another state is New York, where our primary focus will be the share the shavings initiative, which is aimed at reducing the financial burdens on patients.

Zoe Rothblatt  06:00

And vaccines are expected to be a critical focus at state and federal level. We actually just launched a vaccine advocacy training program. We’ll drop the link in the show notes, but we anticipate that to be a really big push next year, just to promote safe and effective vaccines and ensuring that all have access to them.

Steven Newmark  06:20

Yes, exactly, and that access is not compromised. We’ll also be another consistent voice again in 2025 at prescription drug affordability boards as even more states seek to address rising drug prices, and we want to make sure that the patient voice is heard as these boards convene.

Zoe Rothblatt  06:35

So, turning to the federal level, what’s on the agenda for 2025?

Steven Newmark  06:40

Oh, dear. Well, we have a new House, a new Senate, and a new administration, so we’ll talk a little bit about that in a moment, but let’s let you know, we’ll start with the legislation, the Safe Step Act. It’s so close, we mentioned it earlier. It’s at the point where more than half of the members of the House are literally co-sponsors of the legislation. So, it’s at that tipping point; It’s beyond the tipping point. So, we hope that 2025, will be the year that we bring successful conclusion on this legislation that we’ve been working for. I think it’s been six or seven years since its first introduction. Advocacy can be slow, but when you keep at it, you can make progress.

Zoe Rothblatt  07:15

And you know, just a note on the Keep at it, the safe step Act has, like co sponsors remain year over year, they sign back on to it, and we get more Right exactly. So that’s like also really encouraging to see that support from legislators continue each year.

Steven Newmark  07:31

It continues to grow Exactly. And earlier, we mentioned the help co pays Act, which is also gaining steam. It’s a few years behind the Save step act on the advocacy timeline, but obviously we’re going to push as hard as we can to make even more progress in 2025. And yeah, I’ll repeat what I just said, “Advocacy can be slow, but if we keep at it, we will get the reforms we are seeking.”

Zoe Rothblatt  07:51

And other important issues that we’ll be focused on are another acronym here, TROA: the Treat and Reduce Obesity Act, and also Improving Seniors Timely Access to Care Act. So, we’re looking forward to continuing to support this legislation, also knowing that there’s a new administration that may bring about some uncertainty.

Steven Newmark  08:12

Yeah, that’s to say the least. So, we’re going into the Trump-2 administration, starting January 20th. And the House policy landscape is expected to shift significantly. We anticipate these changes could lead to confusion for patients, providers, we’ve spoken in the past about R.F.K Jr., who has been tapped to head HHS. His confirmation is far from a certainty, but if he does go through, he will wield both enormous power, but also an enormous mouthpiece in which to promulgate some of his thoughts on public health, which don’t always align, shall we say, with actual folks, who are public health experts and have actually worked in the public health sphere for many decades. So, there are other staff changes coming as well, so let’s talk about some of the others before going back to R.F.K Jr.

08:55

Sure. So, President Trump has nominated Dr. Oz to run CMS, the Centers for Medicare and Medicaid Services.

Steven Newmark  09:02

Yeah, Dr. Oz, he’s a TV doctor, but he’s also a real life doctor, I suppose.

Zoe Rothblatt  09:06

Yeah, he’s a trained cardiologist, isn’t he?

Steven Newmark  09:09

Yes.

Zoe Rothblatt  09:09

Yeah. I remember watching him on Oprah back in the time.

Steven Newmark  09:13

Between him and Dr. Phil, she loves her doctors, I guess. He is a cardiologist, and I know he ran for Senate in Pennsylvania two years ago and lost.

Zoe Rothblatt  09:21

That’s right yeah.

Steven Newmark  09:22

I don’t know if he gave up his position at Columbia to do that, but regardless, he maintained his position even while he was on television. And I think he worked roughly one day a week at Columbia Medical University Hospital. His focus on wellness, he may advocate for policies promoting preventive care and more holistic approaches to chronic disease management. It’s uncertain what that might look like, at a place like CMS, CMS; Centers for Medicare and Medicaid Services, as the name implies, really oversees and runs Medicare and Medicaid, which are essentially our public insurance options. So, it’s unclear what kind of role or power he might have in influencing Medicare. Medicaid is, of course, is run by the states.

10:02

Well, speaking of that, he’s like previously advocated for the privatization of Medicare, getting rid of traditional Medicare, and moving everyone to under Medicare Advantage Plan. And I saw that Democratic senators are, you know, seeking clarity on how he’s thinking about that now, and wrote a letter to Dr. Oz. So, it’ll be interesting to see how that plays out.

Steven Newmark  10:23

To say the least, it’s interesting because the groundswell of public opinion, as we record this in December of 2024, if anything, seems to be moving, if ever so slightly, but at least ever so much, in the favor of more public health insurance versus private health insurance. So, I don’t know how popular that would be to actually try to expand medicare advantage to the detriment of Medicare proper.

Zoe Rothblatt  10:47

Yeah, I feel like we all know, like something needs to happen with our health insurance system, like it isn’t working so well the way it is, but it’s really hard to make these changes, and, like, a huge overhaul. And like we learned in all these, like, health policy classes, none of these changes are perfect. They all have risks and downsides. So, it’s like, do you stay with the devil you know, or try the devil you don’t know?

Steven Newmark  11:10

Yeah, no, absolutely, absolutely. It’s a funky system we have here in the United States. There’s a renewed focus, if you will. We didn’t talk about it, and I don’t think we need to take a deeper dive. But of course, the CEO of UnitedHealthcare was murdered recently, and they’ve actually captured his alleged assailant, and it is sort of shining a spotlight on the health insurance industry and some of the disturbing practices in which they engage. And I’m not going to, I don’t think we’re going to take a deep dive, other than to sort of bounce off what you just said, Zoe, health care is complicated, and ultimately, we have the system we have. It’s not so simple to just blow it up, you know. The comparison that I’ve heard, that I’m gonna copy from here, is, if you were to dig up the streets of major cities like New York, or even just dig up what’s going on underneath the ground, our infrastructure, our telecommunication system, it’s like duct taped together, basically, down there; It’s like a total mess. If you were to build an infrastructure from scratch, that’s not what you would do, you would start at the basic level and come up with something that’s much more useful. That’s kind of where we are with health care. But during World War II, there were wage controls in the United States, and health benefits were seen as a way of attracting talent to businesses. And in the 1950s labor unions grew in power, and part of what they sought for their members was voice greater health benefits, and the industry exploded, whereas other countries, most notably in the U.K., their citizens were actually being literally bombed. And during World War II, and as a result, without much opposition, they immediately said, “Well, if our people are gonna get bombed, we’re gonna take care of them.” And that’s when the U.K. moved to a nationalized system of health care, and it forms the basics of a lot of Western health care systems, but for us to go purely into that is difficult. Now, that being said, we’ve moved in that direction. We created Medicare and Medicaid, in the 1960s, so we’ve moved a little closer to a public health option. The Affordable Care Act got us a little closer in mandating health coverage for all U.S. citizens, and we moved in that direction. But the idea of blowing it all up and starting from scratch that’s, shall we say, unrealistic.

Zoe Rothblatt  13:13

Even take the ACA, for example, “Affordable Care Act,” like that had been trying to get past since what like Nixon, like, it had been a really long time and then…

Steven Newmark  13:23

Right, depending on how you want to date it, yeah, absolutely.

13:26

And then we got that through, through, like a back door passage. And it’s not perfect, but that was a big change.

Steven Newmark  13:33

Right, right, right? As I said, it moved us a little closer. And to repeat what we said in the earlier segment, “Advocacy takes time, and some things take longer than others.”

13:41

Okay, title for the episode, “Advocacy Takes Time.”

Steven Newmark  13:45

Yeah, it’s a slow slog, and often it’s not perfect, but yeah, that moved us in more of a socialized medicine. I mean, I see comments online, particularly in the wake of this horrific murder, things like, you know, the insurance industry things, I want, everyone should have free health care. It should be like the UK. And I just want to, like, say, on a one on one basis, it’s not quite that simple in the sense that health care is expensive. Like, first and foremost, it costs a lot of money to run and operate a hospital – Number 1. Number 2, the people in health care are very, very well trained for what they do. They get a ton of schooling from nurses to technicians and, of course, doctors, the amount of schooling they get is extensive, and they need to be compensated as a result, as for various therapies that individuals take and medical devices and drugs, those are the amount of research that needs to be done in order to develop a drug is extensive and, literally, costs billions and billions of dollars. And oftentimes, the path that scientists take is one of failure, even when it’s one of success in discovering how to use a medication to address a drug, you then have to go through clinical trials to ensure its safety as well as its efficacy, of course, and that is another cost that’s added on top. I wish everything was free, right? I wish cars were free, I wish my TV was free, I wish I didn’t have to pay rent, but health care, it’s hard to get it to be free without giving something up; Someone’s gonna have to pay at some point.

Zoe Rothblatt  15:06

But we can all agree, there’s, like, an unfair burden on patients, especially chronic disease patients, which is why we advocate for the policies that we do.

Steven Newmark  15:16

Definitely. So, I mean, and I would say, and I’ve said this on this program, I think the issue is, ultimately the way it works, is whether it’s private insurance or public insurance, those who are healthier should subsidize those who are less healthy. And what I mean by that is, if you have a chronic disease, let’s just take chronic illness. If you take chronic illness and have to take expensive medications, there are two ways to look at that: You could say, “Too bad. So sad. You got to take your Med. You ended up with that. I’m healthy. Why should I have to pay for that guy?” Or, another way to look at it, and the way I prefer to look at it is, “If I am lucky enough to have been born and go through the majority of my life without the need for expensive medications or surgeries, and I’m healthy, I would gladly pay a little bit more into the health care system, whether it’s public or private, so that other individuals, who already were born with a strike against them don’t get that additional strike of having to try and struggle to pay for products that could actually make their lives better.” I want to live in the society where we’re all living as healthy lives as possible.

Zoe Rothblatt  16:13

For sure.

Steven Newmark  16:14

And by the way, that’s very I know I understand that’s very socialistic to think like that. But anyway.

16:18

Yeah, but even if you’re like thinking selfishly, like, you may be healthy now, but this kind of dark you’re not always going to be healthy. Like, once upon a time, I didn’t have a diagnosis, and then I did, you know?

Steven Newmark  16:30

That’s true. I mean, look, I have car insurance, and I hope to never have to use it. I have flood or fire insurance, whatever. I hope to never have to use those things, but I get them out of a sense of selfishness in a way, right?

16:40

Yeah. Well, I guess to round out that discussion, we’ll do what we always do: educate patients, bring together community, and share patient stories to advocate for better policies.

Steven Newmark  16:53

Definitely, and I’ll just say, because I know we didn’t do a deep dive on like, the top of the food chain over there. No pun intended, or maybe a pun intended, I’m not sure. R.F.K, Jr., well, you know, in the coming weeks, this is our last show before the New Year. In the coming weeks, we’ll see how much traction he’s getting. If it looks like he’s going to pass muster, we’ll certainly start to talk about it a little bit more as to what we’re doing. Before we close, let’s talk about what you, our patients, can do in 2025.

17:16

Well, number one, join our 50-State Network. We’ll help you tell your story, figure out what issues you want to advocate on. We’ll put a link in the show notes, of course.

Steven Newmark  17:25

Definitely. You know, stay informed through our newsletters, webinars and, of course, our podcasts. And then, you know, share your story to inspire change and highlight real patient experiences. E-mail us at [email protected] to get involved.

Zoe Rothblatt  17:38

And as we head into 2025, Happy New Year, Everyone!

Steven Newmark  17:40

Happy New Year!

Zoe Rothblatt  17:43

I feel really optimistic about the impact that we can make together!

Steven Newmark  17:47

Well, Zoe, on a personal level, I just want to say it’s been phenomenal, fun time in 2024 doing this podcast with you, and I wish you and your family all the best as you head into the holiday season and a very, very happy new year.

Zoe Rothblatt  17:59

Thank you, you too. And yeah, I’m excited to see what’s to come for us in 2025, we got some pretty cool statistics from our Spotify wrapped and saw growth in listeners. So, even like, it’ll be great to continue doing this with you in the new year and see our community grow.

Steven Newmark  18:14

Absolutely! Before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

18:22

Well, everyone, thanks for listening to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week to Help you Make Sense of it All.” If you like this episode, give us a rating, write a review, and definitely hit that subscribe button. I’m Zoe Rothblatt.

Steven Newmark  18:35

I’m Steven Newmark. We’ll see you next time.

Narrator  18:41

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help you Make Sense of it All.” I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:26

And today, we’re joined by Keyla Caba, who lives with Crohn’s disease and ulcerative colitis. She is the CEO and founder of “Connecting Pieces,” a non profit with the mission to improve the lives of those impacted by gastrointestinal disorders, gastrointestinal cancers, and ostomies. Today, we talk about her IBD journey, the importance of awareness and advocacy, and why she started connecting pieces.

Steven Newmark  00:50

Great! I’m excited to have a listen.

Zoe Rothblatt  00:52

So, Keyla, welcome to “The Health Advocates.” Can you start by introducing yourself to our audience?

Keyla Caba  00:58

Hi! My name is Keyla, I am 39 years old, and I have Crohn’s disease and ulcerative colitis. I have had the conditions for about 12 years now, which has left me with a permanent ostomy bag. I live in Boston, Massachusetts. I am a caregiver to a child, with ulcerative colitis as well, I am a non profit founder and owner, and a uterine cancer survivor, and a patient advocate as well.

Zoe Rothblatt  01:26

And can you describe what those symptoms were like in the beginning?

Keyla Caba  01:30

See, this is kind of interesting as well, because in my story, I started to have symptoms when I was a child, but I was not officially diagnosed until I was 28 years old. So, my parents kind of came from the Dominican Republic; they didn’t speak the lick of English, when they came to this country, and so I had to serve as a translator for them. And I don’t know if it was, just like, me lost in translation, or what the problem was that there was a delay in my diagnosis, but when I was growing up, I thought that rectal bleeding, which is what I was having and passing out as well with bowel movements, was normal for everyone, and it wasn’t until I worked in the health care field, and I started, actually, working with children that have IBD, and I had passed out at work one day, and one of my co-workers said, “Hey, that’s not normal. You need to get that checked.” So, I was like, “Okay, I guess so.” I ended up going to the doctors, and even then, I didn’t get my official diagnosis; I had to go for a second opinion afterwards, and that’s when they told me that I had ulcerative colitis.

Zoe Rothblatt  02:35

Thinking about your journey to diagnosis and living with this disease, what’s one thing that you wish more people knew about inflammatory bowel disease?

Keyla Caba  02:44

I feel like it’s everything, everything because there’s not enough, not even myself as a patient, like I didn’t even know enough; it’s a lifelong condition; it’s an invisible illness. I know, like on the outside, right, I look okay, but on the inside, my body is like creating all this havoc that nobody can see and nobody knows that I’m experiencing. So, it’s a roller coaster ride that I did not sign up for, but I have learned to become friends with it. So many people, and everybody’s journey is so different, and you cannot compare, like, one person’s IBD story to another. So, those are definitely, I think, the main ones for me.

Zoe Rothblatt  03:24

It’s so true that everybody’s journey is so different, which kind of leads me into my next question, which is, why do you think it’s so important to raise awareness for Crohn’s disease and ulcerative colitis?

Keyla Caba  03:35

So, I think it’s important to raise awareness, because just in having this condition for 12 years, even then, I’ve seen science and so many things change already. In the beginning, I think there was only maybe five medications available for the condition, when I was first diagnosed. Now, I believe there’s like 10 or 12. So, that’s one thing. But definitely too, if we don’t raise awareness, like, how are other people gonna know that this exists? Nobody enjoys talking about poop, first of all. No one enjoys talking about bathroom experiences, what they go through, and so some of the symptoms that you have when you’re having Crohn’s is, some people have, rectal bleeding, is one of them, or diarrhea. And no one likes to talk about having rectal bleeding or diarrhea, and these are some signs of just, it could be, like many different things. And the second thing about raising awareness is kind of going back to, previously, my other answer is the invisible illness, the lack of awareness, the lack of resources that we have. I think the more that people know about it, the more access that we’ll have to better health care, to better treatment, just to a better lifestyle in general. So, also too, I feel like it’s helped me sort of heal in my journey as well. So, sharing my story has absolutely been sort of a pillar for me in this kind of roller coaster ride, as I said.

Zoe Rothblatt  04:57

Speaking of a roller coaster ride, there’s a lot to learn when diagnosed with a condition like this. So, how did you educate yourself as a newly diagnosed patient? Can you tell us a little bit about those early days of your journey?

Keyla Caba  05:09

So, when I started my journey, how did I get to where I am now? I guess sort of the resources I found was everything and everything – I just researched like a mad woman. I made it my priority to learn as much as I could about having an ostomy, what people were doing out there, what they were wearing, just to think, just everything. And then, similar to IBD as well, like, what are natural things people are doing, what’s working for them? And so through all this research, I kind of just started one-by-one, fracking, and then finding what worked for me. And that’s where I think journaling is, like, super important as well, because I’ve come to a point where I even know, like, what foods I can and can’t have, how long if I do decide to cheat, how long I can wait in between to, you know, like I’ve mastered it so well. So, I would say tracking, community support groups, and communication. Because if you don’t communicate to your doctors or anybody, then how you gonna get anywhere?

Zoe Rothblatt  06:12

So, what’s a common misconception about Crohn’s and ostomies, that you’d like to debunk?

Keyla Caba  06:17

So, let’s go with Crohn’s first. “You have to eat better,” or, “I’m sure if you exercise or if you rest, like, you’ll be fine and it’ll get better.” Wrong. “Take your medications and you’ll be cured.” There is no cure for Crohn’s right now. There are people, who can maintain the condition, without being on medications, which is amazing for them, but there’s no cure for this disease, and having an ostomy, we could be here all day talking about this. There’s like, “Do we smell?” Just personally, like I was like, “Am I gonna be sexy? Am I gonna be attractive? Am I gonna be able to do anything?” I wear, whatever I want, as well, as I said earlier, I’m a model as well; I’ve worn wedding gowns, I’ve worn bathing suits, I have modeled in anything and everything that you could possibly think of, and I’ve still been able to make it work or conceal it as well, whichever way you are. Not everybody likes to show their bag, and some people don’t care. I remember right out of the hospital, I was like, “Can I wear my seat belt? Like, should I not let it be against my abdomen? Swimming?” I like to shower without my bag sometimes. People, who have ostomy don’t even know that. So, there’s so many things, so many things that we can touch on, but we’d be real thing.

Zoe Rothblatt  07:32

Yeah, we would be here all day. So, speaking of day, what does a good day look like to you? And how does it differ from a bad day?

Keyla Caba  07:40

So, good days versus bad days, I feel, like, they’re all interesting days. This roller coaster ride that we, and it really is, I always call it a roller coaster because of this, because one day I might wake up and I’m in pain sort of every day, right. But it’s a matter of how much am I able to tolerate, first of all. That day, I just took my medication yesterday. So, today is actually a low frequency day for me, because I’m exhausted, but you see me here, I’m smiling, I’m energetic because I went to bed so early. I’ve had to learn what kind of works for my body, give myself grace, and just kind of go with the flow as well. So, a realistic good day, okay, not one where I’m sugar coating of how I feel, I would say, consists of maybe a pain scale of like five and under. I’m constantly in pain every day, whether it be joint pain, stomach pain, or some sort of symptom I’ll be having, like nausea, something with my Crohn’s will always kind of come out. I would say a good day would be making sure I get out of bed, making sure I am able to walk. There’s been times where I haven’t been able to walk or shower myself, or I would love to go for a walk, but I’m in a hospital bed. So, I count the little things, I guess, that some people would say would be little, as like, a good day right now, and if I end up achieving more than that, then even better. Bad days for me, I would say it could just be, like, I’m either really nauseous or I’m not able to eat a lot that day, or take in a lot of, like, liquids, or it be where I am, kind of in bed, or working from my bed.

Zoe Rothblatt  09:26

Diving in a bit deeper, to what you just said, how has your relationship with food changed since being diagnosed with Crohn’s?

Keyla Caba  09:33

Oh my gosh, like you’re the first person that’s ever asked me this question. Thank you for asking this, because it’s like, what, something I’m so passionate about, actually, as well. My organization provides a virtual cooking class for this exact reason. So first, I’m not gonna lie, it was a love-hate relationship, and you start to sort of, well, at least for myself, build this fear. Because you can eat a cracker today, and that same cracker tomorrow might make you so sick. And so, you start to get this sort of trauma, I guess, and fear, and anxiety with eating food. And you have to learn that, at least for myself, I had to teach myself it’s not me, like, it’s not what I’m doing. I am doing all of the things that I know my body needs. Just right now, it’s wreaking havoc, and it’s angry, and it’ll calm down, and that cracker will be your friend tomorrow. And then I say it after. And so, I try to, like, learn, you know, when these flares come, what are my flare foods that sort of don’t upset my stomach? And so for me, it’s like, plain rice, or like chicken; very plain, sort of diet and food. And then I’ve also had to learn to navigate things now that I have an ostomy. And so that just threw in like a whole other curve ball with eating as well. Because you have to sort of learn, if you want an apple, you got to take the peel off. Maybe it might work for me; might not work for you. You know, you might not be able to have an apple at all. And so, it’s like trial and error, but also thinking outside the box, like I would never have thought of like peeling a grape. Who peels grape? Nobody ever peels grape. So, I’m actually able to tolerate them, as long as I don’t have a peel. And like, I wouldn’t have thought something like that until I wouldn’t have spoken, like, I talked to a nutritionist, I talked in support groups, I did so much research. And our cooking class is there for this exact reason, for those people that are getting discouraged, and eliminating foods left and right, and, basically, leaving themselves with, like, not many options.

Zoe Rothblatt  11:36

Well, Keyla, you’ve been smiling and laughing throughout the interview, so my question is, how do you stay positive and manage your mental health when dealing with a flare up?

Keyla Caba  11:45

I mean, I consider myself now a veteran with Crohn’s. I still, every day I’m learning something new about the condition, about myself, and about this healing journey. I would absolutely say I had to learn to become friends with it, not see it as my enemy; learn to cohabitate with the condition. Learn that it is my lifelong friends, and how are we going to support each other, right? What’s my self-care look like, whether it be journaling, whether it be meditating, whether it be a bubble bath, whether it just be laying in my bed for a couple days, because I need that. Whatever that kind of self care sort of looks like in that time frame and in my journey, I try to listen to my body absolutely a lot more, because it will definitely let me know if I don’t listen to it. Sharing my journey, too, on social media. I’m too old to consider myself an influencer, but sharing my journey online as well, knowing that there’s someone out there that can relate, and that I’m not alone has absolutely been just really great in my journey. And I have been, you know, in those dark places before like, this journey is absolutely not easy, but I find that it’s a lot harder when you’re kind of at a low frequency, let’s say, or if you’re thinking negatively. And I’ve allowed myself a certain time frame for that, and then after that, it’s like, “Let’s just keep going, because this condition is going to be here, and it stuck with me forever. So, let’s just keep on trucking.”

Zoe Rothblatt  13:16

Now, you’re also a fierce advocate. Can you tell us what led you to, you know, start speaking up about your conditions, and advocate for yourself?

Keyla Caba  13:24

It was from my personal journey and barriers that I sort of ran into, anything from insurance denying medications that I needed to be on, that my doctor had suggested that that was the one I needed to be on, that, I have so many stories for days, but all the barriers sort of that I ran into, and I was like, this, my background in health care as well working in health care, and the knowledge that I knew. A combination of all of those. And then I was like, “This has to improve. This has to get better for us.” And so I found this other organization called ‘Patients Rising.’ They are a non-profit, and they pretty much provide support and resources, and advocacy on legislative levels, state and federal, to patients and caregivers. Anyone that’s interested in advocating, they have a free master class online. You go at your own pace, which I love, and I learned everything I know from them. They’re the ones, who taught me about speaking to your insurance companies, and to the state about making sure that medications stay covered on the insurance formulary every year. I know microbes medication is about $50,000, so I definitely want to make sure that states is a covered medication there. And so knowing that as well, how much does your medication cost? Knowledge is power, and I definitely got that from ‘Patients Rising.’

Zoe Rothblatt  14:42

And can you tell us a little bit more about your advocacy work?

Keyla Caba  14:46

I really think it’s fun. I love talking to legislators and telling them like, “Hey, this is what is really going down with these insurance companies and what they’re doing. And this is not okay.” I’m actually going to be advocating later today with legislators, here in Massachusetts. I’ll be testifying and sharing my story about the lack of ostomy supplies and coverage. So, like I said, I could be here all day talking about this, but I speak on the state level, federal level, I’ve gone to Washington. I go at least every year for different awareness days or weeks, and talk about different bills from improving disability, health care, it could be speaking to insurance companies about continuing coverage for our medication specifically. So, like I said, it could be like so many different, anything to improve the lives for our community.

Zoe Rothblatt  15:32

It really is so many different things. Would you mind telling us one example of a time you advocated with legislators that made you feel like you really made a difference?

Keyla Caba  15:42

I would say, getting the proclamation for Massachusetts for Ostomy Awareness Day, that was probably, for me, like the biggest thing, even though it’s just like an awareness day, and just the acknowledgement that they acknowledged it. And then I would say, the current project: me testifying later today, we’re about to meet with this committee, who have the power to say, either ‘yes’ or ‘no’ about covering ostomy supplies for people in our state. If this gets passed, then other states can start incorporating it as well. So, for me, I would say probably today, right now.

Zoe Rothblatt  16:16

And can you tell us why having a support network is important for people living with chronic illness?

Keyla Caba  16:22

Having a strong support network is going to be life, and it’s going to look different for everyone. So, for example, my family never understood this condition, and so, they were not as supportive as I would have liked for them to be. So, people are going to show up in whatever form they’re going to show up. It’s a matter of how do you want them to show up for you? And so, I feel like it’s definitely important for you to communicate that to whoever your circle is, whether it be a stranger, someone you met online, someone in the community, could be a relative, a friend, whoever it is that you’re choosing to keep in that circle, give them grace and give yourself grace, but communication is key, and allow them to learn into your journey and what’s going on with you as well.

Zoe Rothblatt  17:08

I think that leads us into my next question so well, with talking about support. Can you tell us more about your nonprofit, ‘Connecting Pieces?’

Keyla Caba  17:16

Yes! So, my nonprofit is ‘Connecting Pieces.’ We are a 501(c)(3), registered non-profit, out of Boston, Massachusetts. We provide support for patients with gastrointestinal disorders, cancers, and ostomies, adults and children, caregivers, and we provide free ostomy supplies for anyone in need, internationally and nationally as well. We’ve provided supplies to patients in the Caribbean, Europe, Middle East, UK, and we’ve been open for about a year. We also offer virtual art expression classes, and movement classes, and we also offer virtual cooking classes with these amazing chefs, and a dietitian that we have as well.

Zoe Rothblatt  17:57

Keyla, thank you for all you do – You’re such a powerful voice for the community, and, you know, sharing your story with us. And one last question before you go, if you had one message of ‘hope’ you wanted to share with others on living with Crohn’s, what’s your message?

Keyla Caba  18:11

You are not alone! You are not alone; there’s like a whole community of us out there. And reach out to people. You have an entire community of people out there, organizations out there that have many different levels of support, bilingual support, virtual support, in-person support, for children, for adults, for caregivers. Don’t be afraid to talk to people in the community, or anybody, and just know, like, give yourself grace, and you are not alone.

Zoe Rothblatt  18:40

Keyla, thank you so much for joining us on “The Health Advocates,” and for spreading awareness this Crohn’s and Colitis Awareness Week.

Steven Newmark  18:48

Wow, Zoe, that was a really great discussion! Well, before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  18:57

Well, everyone, thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help you Make Sense of it All.” If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  19:10

I’m Steven Newmark. We’ll see you next time.

Narrator  19:16

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: a Podcast that Breaks Down Major Health News of the Week to Help you Make Sense of it All.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:27

And today, we have our special episode, our annual ‘Turkey Day Talking Points.’ But first, Steven, I want to ask, what are you thankful for this year?

Steven Newmark  00:35

Well, I’m always thankful for our patient advocates here at GHLF. I’m so thankful for the 1000s of patients that we have, that continue to advocate for themselves, and patients around the country.

Zoe Rothblatt  00:47

It’s so true, especially coming off of the American College of Rheumatology Conference, seeing our colleagues there in the patient community really active, it just reminds you that, you know, we’re stronger together.

Steven Newmark  01:00

Absolutely, this holiday is also an important opportunity to share with loved ones, what it’s like to live with a chronic condition, and the vital advocacy you engage in, to ensure better access to treatments and care.

Zoe Rothblatt  01:11

And today, we wanted to highlight one key topic that you can bring up with your family, something that may be going around in the news, or you hear about online, and that’s weight bias. So, you know, let’s just talk about what it is, why it’s important to address it, and give some conversation tips.

Steven Newmark  01:27

Sure. So, weight bias refers to negative attitudes and beliefs about individuals based on their body weight. The bias can manifest itself in many areas of life, including health care, education, and employment, and it often leads to discrimination and stigma, which can significantly impact the person’s quality of life and health.

Zoe Rothblatt  01:42

And addressing it is really important because we want to reduce weight bias. It’s essential for building a more inclusive society, where everyone feels supported to get access to the care that they need, because weight bias can often lead to a lot of prejudice health beliefs amongst, even health care providers, but those around you, and it can make you hesitant to seek care, and we want to try to reduce that as much as possible, so people feel respected and compassion from the health care system and those around them.

Steven Newmark  02:13

So, what can we do, as advocates, to people in the community around this topic? Starting with conversations.

Zoe Rothblatt  02:20

Exactly, yeah, just like we are now. You know you could bring up these talking points, share your experiences, or stories, with loved ones about the importance of treating people who has chronic illness with respect and how chronic illness affects people’s lives.

Steven Newmark  02:35

Yeah, and you should also understand, and perhaps challenge myths, educating people about misconcessions that surround weight and health, emphasize that health is multi-dimensional and cannot be judged solely by one’s body size.

Zoe Rothblatt  02:47

And you could also take it a step further and advocate for policy change. There are bills, like, we talked about TROA [the Treat and Reduce Obesity Act] at the federal level that increases access to obesity care. You could join our 50 State Network of Advocates to learn more, and we could help you get involved there too.

Steven Newmark  03:04

Yeah, and I’ve heard people say that focusing on someone’s weight or weight bias can sometimes undermine the importance of maintaining a healthy lifestyle, or even continue to encourage unhealthy habits. But that’s not really the point. The point is that to explain that addressing weight bias doesn’t necessarily downplay one’s health. You could talk about health and weight in not, necessarily, in the same sentence, If that makes sense. You want to foster a supportive environment, that allows individuals to pursue health, without fear of stigma or discrimination is the key.

Zoe Rothblatt  03:31

Exactly. And research actually shows that compassionate, unbiased care leads to better health outcomes, which makes sense, you’re more likely to seek care when you feel comfortable and follow those recommendations from a provider that makes you feel safe, and like you’re in really good hands. So, it ultimately leads to better health outcomes to have these conversations and really, like, foster that support.

Steven Newmark  03:55

Excellent. Well so, this Thanksgiving, we encourage everyone to start meaningful conversations with your loved ones on this topic, or any topic of importance, of advocating for patients and what it’s like to live with a chronic condition.

Zoe Rothblatt  04:05

And you can share your story with us at [email protected] and we also encourage you to join our 50 State Network and get involved in advocacy with us. We’ll drop a link in the show notes to sign up.

Steven Newmark  04:17

And once again, we’re incredibly thankful for the hard work and dedication of our advocates, your passion and commitment drive change and help create a world where everyone has access to compassion and effective care.

Zoe Rothblatt  04:27

Absolutely, it is really the voice of patients that help affect change.

Steven Newmark  04:32

Before we go. Zoe, you know it is Thanksgiving. What are you looking forward to this Thanksgiving?

Zoe Rothblatt  04:37

Oh my gosh. I love the parade, the Macy’s Thanksgiving Parade, that’s here in New York.

Steven Newmark  04:42

Nice. Are you gonna go?

Zoe Rothblatt  04:43

No, I usually watch it from the comfort of my couch.

Steven Newmark  04:46

Yes, smart.

Zoe Rothblatt  04:47

With breakfast and a coffee in hand, just staying warm, cozy with the family, enjoying all of the floats. It’s really fun.

Steven Newmark  04:55

That’s a good one. That’s a good one. When I was a little kid, every year we’d watch the parade, and every year I would ask to go. And every year my parents would say, “Maybe next year, maybe next year.” I never got to go. I want to do it someday, someday.

Zoe Rothblatt  05:06

Do your kids ever ask about going?

Steven Newmark  05:08

No, I can’t even get them to watch it on TV…different generations.

Zoe Rothblatt  05:11

*laughter

Steven Newmark  05:11

Yeah, well, that’s great. I’m excited myself to just have a couple of days to relax, and watch a little football, and kind of let the brain rest a little bit.

Zoe Rothblatt  05:20

Yeah, that’s what that’s for, right? Good family time.

Steven Newmark  05:24

Definitely

Zoe Rothblatt  05:24

Also, like, to say you should be, like, thankful for yourself and like you’re saying, give yourself that time to rest and like, appreciate how far you’ve come in the last year.

Steven Newmark  05:33

Yeah. Well, Happy Thanksgiving listeners. And before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  05:42

Well, everyone, thanks for listening to “The Health Advocates, a Podcast that Breaks Down Major Health News of the Week to Help you Make Sense of it all.” If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  05:55

I’m Steven Newmark. We’ll see you next time.

Narrator  06:01

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Zoe Rothblatt  00:08

Welcome to “The Health Advocates: a Podcast that Breaks Down Major Health News of the Week to Help you Make Sense of it all.”  I’m Zoe Rothblatt, Director of Community Outreach at GHLF. And we’re here live reporting from ACR, the American College of Rheumatology Annual Convergence, where patients, providers and researchers all come together to learn about the latest updates in rheumatology. And today, we are interviewing providers and patients. So, let’s start with our first guest, Sharon Dowell.  Sharon, welcome to “The Health Advocates.” Can you please introduce yourself to our audience?

Dr. Sharon Dowell  00:43

I am Sharon Dowell, and currently, I am the medical director of Rheumatology at NEA Baptist Hospital in Jonesboro, Arkansas, and that’s coming right after working for over 10 years at Harvard University in Washington, DC. And I have been a rheumatologist for, I guess, well, for 10 years, like time really flies.

Zoe Rothblatt  01:05

So, we’re at ACR. Which session are you most looking forward to this year?

Dr. Sharon Dowell  01:09

At ACR, the session, that I love the most from the time I was a fellow, is a thieves market, and that’s because you have those really interesting, puzzling presentations that challenge the mind, and it’s always a challenge to come to the right diagnosis. And it shows how diverse rheumatology is.

Zoe Rothblatt  01:27

And can you tell us a little bit about how attending an event, like ACR, helps you become a better health advocate?

Dr. Sharon Dowell  01:34

Attending an event, like ACR, it helps us in many different ways; It doesn’t only enrich us in terms of knowledge and updating ourselves on what is happening in the world of rheumatology, but it’s also an opportunity for networking, an opportunity to interact with your fellow rheumatologists around the globe, and to hear about different challenges that they themselves are facing. And I think that allows you to better advocate for your patients, because it gives you all these different nuances of care and the patient experience as well, some that you may not experience yourself, but it helps you to have that, sort of, really broad view of patient care.

Zoe Rothblatt  02:13

Well, thank you so much, Dr. Dowell. And now we have another clinician with us, Dr. Swami Venturapalli. Dr. Venturapalli, can you please introduce yourself to our audience?

Dr. Swami Venturapalli  02:24

Yeah, hi, my name is Dr. Swami Venturapalli. And I run a practice called Attuned Health in Los Angeles, California. I’ve been doing clinical trials for over 20 years, I have participated in over 150 clinical trials, several of them as a principal investigator, several of them in lupus, myositis, some in rheumatoid arthritis.

Zoe Rothblatt  02:42

And are there any lupus specific sessions, during ACR, that you’re looking forward to this year?

Dr. Swami Venturapalli  02:47

Yeah, the big lupus specific sessions that I’m really interested is in some of the newer therapies for lupus, particularly related to the advent of these drugs called CAR T-cells, which are really interesting. They’re the ‘New Kids on the Block,’ really, and I’m trying to learn more about them so that I can discuss them in from a knowledgeable perspective with my patients. So I think those are the sessions I’m really looking forward to. I think there’s some posters related to CAR T-cell therapies and lupus. I have a patient, currently, with lupus nephritis, and she’s tried multiple medications, and unfortunately, they’ve not been able to control the lupus, so I’m interested in learning more and taking back to her, when I get back to my practice, and letting her know what I’ve learned.

Zoe Rothblatt  03:28

Finally, why is ACR, and specifically the lupus research that comes out of it important for the patient community to learn about?

Dr. Swami Venturapalli  03:36

Well, ACR is the biggest show in rheumatology. It’s where rheumatology meets. It’s called “Convergence,” for a reason, it’s for people all over the world coming in, presenting their research. It’s the best scientific meeting for anything in rheumatology, lupus, included. Lupus is actually highlighted quite a bit in the programs throughout ACR, and it attracts a lot of lupus researchers, from all over the world, who want to present their data, their research, and what they’re doing, and what’s new and exciting. And it’s a great way for people, like me, to come in, interact with colleagues, and learn from their own experiences.

Zoe Rothblatt  04:09

Well, thank you so much for joining us on “The Health Advocates.” And listeners, we’re not done yet, we’ve also interviewed patient, dietitian, and CreakyJoints contributor, Cristina Montoya. Hi, Cristina. It’s so good to be with you. Can you start by introducing yourself to our audience?

Cristina Montoya  04:25

My name is Cristina Montoya. I’m a registered dietitian and a person living with Sjögren’s disease and rheumatoid arthritis for more than 20 years. I am excited to be here at ACR, for the very first time, and very first time that I had the opportunity to participate in a panel. I was with, Eileen Davidson, and other team members, we were discussing about the unrecognized symptoms of rheumatic diseases, so that it’s not just joint pain. So, I was very honored to share my experience as a patient, and also as a registered dietician – As every single rheumatologist gets a question about diet and arthritis.

Zoe Rothblatt  05:06

So, what has been your favorite thing at ACR, so far?

Cristina Montoya  05:10

My favorite thing at ACR. Okay, so the fact that I was a speaker. For the first time I attended ACR, being a speaker and sharing my expertise in front of over 200 people, that was pretty amazing. But there’s also something else that happened, and it happened last night. So, if you don’t know, I’ve been involved with the OMERACT Sjögren’s disease working group, that is an international group that are working on, basically, developing new domain outcomes set for clinical trials, so we can actually have more validated data in Sjögren’s disease. And I was so, so happy that my advocacy, about the gastrointestinal manifestation in Sjögren’s, are being taken into account. And I was, actually, very honored to be one of the patient partners, that have been contributing to the development of these tools. That was a highlight for me.

Zoe Rothblatt  06:11

Thank you so much, Cristina, for joining us and all the work you do for patient advocates. Finally, we have our very own, Dr. Shilpa Venkatachalam, who is the Chief Patient Centered Research and Ethical Oversight Officer at GHLF, as well as Co-principal investigator of PatientSpot. Shilpa, you’ve been meeting with a lot of health care professionals for the past few days, here at ACR, and you’ve also been to many presentations. Can you, please, tell us how this year’s ACR has been? You know what you’ve learned? Any highlights you want to share with our audience?

Dr. Shilpa Venkatachalam  06:11

Thank you, Zoe. So, attending the American College of Rheumatology Conference 2024 right here in DC, on a beautiful, sunny day was truly inspiring. For many of us, living with rheumatic conditions, like myself, this conference is more than just a meeting. It’s really a beacon of hope and progress, and this year, I was particularly moved by the numerous patient centered sessions that emphasize the importance of our voices as patients in shaping research and treatment strategies. Hearing first hand accounts, from fellow patients, and seeing our stories highlighted alongside cutting edge scientific advancements, reinforce the crucial partnership between patients and health care providers. The 2024 ACR Conference showcased some remarkable strides in rheumatology research, reflecting our shared commitment to improving patient outcomes. Breakthroughs in biologic therapies and novel treatment modalities were at the forefront: promising enhanced efficacy and reduced side effects for patients, like you and me, collaborative panels underscored the vital role of patient advocacy in guiding research priorities and ensuring that scientific developments must align with the real world needs of those affected, by these diseases. It was heartening to see such a strong synergy between researchers and the patient community driving forward innovations that hold the promise of a better quality of life for us all. The American College of Rheumatology 2024, has really reinforced our dedication to advancing rheumatology care through collaboration, innovation, and unwavering support for the patient community. We’re truly excited about the future and remain committed to bridging the gap between research and real life impact, ensuring that every breakthrough translates into meaningful improvements for those we serve. Wow, Shilpa. Thank you so much for that recap and being on the ground to, you know, break this down for patients like me, and I’m wondering, you know, how does research help patients advocate for themselves? Can you talk to us a little bit about that?  So, the question really is, how does patient centered research help advocate for patients? And the main point of patient centered research is that it’s relevant research. And what we mean by relevant research is we translate the everyday lived experience of patients. So, you know, things like, how do patients living with these conditions, with chronic pain, do laundry, for example, very simple questions, what kind of hopes do they have when they think about attending their grandson’s wedding, or a graduation, and their family. And so, those are the pieces of the puzzle that you can’t see on blood work or imaging. And so, what we’re doing with patient centered research is combining those pieces of information with clinical research, data from EHR, and then building a bigger picture, a more fuller picture of the person, not just the patient. And so, when patients then come to their appointments, and talk to their doctors, they’re able to talk about how this disease affects them in everyday lives, and so that’s how they can advocate for themselves. And Shilpa, on the other end, how, as a researcher, do you advocate for patients?  So, as a patient advocacy organization, that has a lot of emphasis on patient centered research, one of our commitments to the patient community and to the clinical community, and of course, to the research community, is to help advance our understanding in dramatic and musculoskeletal conditions. And one of the ways that we can do this is by bringing together different pieces of the puzzle, because this really is a jigsaw where we have to build and piece together different pieces of information, different kinds of data, anecdotal data, data that’s coming from the everyday, lived experience, and then, of course, clinical and EHR data. And when we combine them all together, we are really telling researchers and clinicians what matters to patients, to people who live with these diseases. Thanks, Shilpa, I love that metaphor about the puzzle. It really is so important to just bring together the lived experiences, and the data, to really get a full picture and help patients stay more informed on their health. You know, I also wanted to ask you, what’s one study that you’re presenting on that you think can help patients advocate for themselves, with their doctor, or with their loved ones? So, I’ll tell you that we use our patient registry, the PatientSpot platform, to collect information, to collect what we call patient reported outcome data. These are pieces of information that come directly from the patient, and then doctors, and clinicians, partner with us, so that they can share information that they’re seeing in lab works, and blood works, and imaging in their encounters with patients. Then, we combine all this information, and so, instead of just one study, think of the PatientSpot registry as the study here, that can be used for patients to advocate for themselves, to talk about how this condition really affects them, impacts them every day that they live with it, right? So, from walking your dog to getting enough sleep, to feeling fatigued, then going to work, and then coming back, meeting with your family, making sure there’s, you know, food on the plate, doing your social activities that helps you maintain your mental health. Those are the things that PatientSpot can help you advocate, because many of these diseases are invisible, and so one important thing that patients need to advocate for themselves is for us to make these diseases visible. And the way we make them visible is by collecting information from patients, directly from patients, combining it with EHR data, with clinical data, and then packaging it in a way that can then be shared with loved ones, so that the invisible becomes visible.

Zoe Rothblatt  12:52

Well, thank you, Shilpa, for joining us on “The Health Advocates,” for all your work you do on behalf of patients, you and the entire GHLF team. We’re really grateful for this research that’s, you know, being done, and that we’re able to share it with the patient community.

Dr. Shilpa Venkatachalam  13:06

Thank you, Zoe.

Zoe Rothblatt  13:09

And thank you to everyone, who joined us live from ACR, to talk about the research. You can really feel the spirit here, and we hope this helps improve patient outcomes.  Well, everyone, thanks for listening to “The Health Advocates: a Podcast that Breaks Down Major Health News of the Week to Help you Make Sense of it all.” If you liked this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt, and thanks for tuning in to our special episode about ACR.

Narrator  13:40

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help you Make Sense of it All.” I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:26

And today, we’re joined by Ron Howrigon, who is President and CEO of Fulcrum Strategies, with 18 years of experience in the managed care industry. As a negotiator and network manager, he has held senior management level positions with three of the largest managed care companies, in the country, and he’s also the host of “The Flatlining Podcast.”

Steven Newmark  00:45

Great. I’m excited to have a listen.

Zoe Rothblatt  00:48

Welcome to “The Health Advocates,” Ron. Why don’t you kick us off by introducing yourself?

Ron Howrigon  00:52

Great. Well, first of all, thanks for having me. My name is Ron Howrigon. I’m the president of a consulting firm, that I founded and owned, called Fulcrum Strategies. And we try to help doctors navigate, what is a very difficult insurance environment right now. And I really appreciate what you guys are doing, and glad to be here.

Zoe Rothblatt  01:07

Awesome. So, can you tell us a little bit more about that career path and what motivated you to start this consulting firm? And, you know, where you were previously with insurance companies?

Ron Howrigon  01:17

I tell people, I’m a recovering managed care executive.  I feel like I need to do that. You know, I’ve been clean and sober for 20 years now. So, I started my career actually working for insurance companies. Worked for Blue Cross Plan, Kaiser, Permanente, Cigna, all over the country. And my job, simply put, was to try to purchase health care at the absolute lowest price possible. I negotiated rates and reimbursement policies against physicians and hospitals, and I started to get a little disillusioned with who I was working for, what I was doing, to the practice of medicine. And when my second child was born, I was working for Blue Cross Plan. We had reduced the reimbursement for the obstetricians across the state, about six weeks prior to that delivery, and had an emergency C section. I’m holding a beautiful baby boy, thanking everybody and everything in the room. I think I thank the surgical tray. And the doctors did what they do; They didn’t take a victory lap, they didn’t take a bow. They just sort of played it off and said, “Hey, you know, glad everything worked out.” And the obstetrician turned right before he left the OR and said, “You know, Ron, the next time you take money out of a doctor’s pocket, you remember tonight, because I’m the one who was here,” and I felt terrible. And later, I’ve heard somebody describe that feeling of being in a job that you’re not comfortable with, as friend of mine once described his job and said, “I feel like a prostitute sitting on the side of the bed, counting her money, hating what I had to do to get it.” And that really describes the feeling. So, that’s when I decided that I couldn’t do it anymore, and I started my company and switched sides and decided to devote the rest of my career to try to help physicians. That was 20 years ago now.

Zoe Rothblatt  01:20

*laughter Yeah, I mean, a little different, but I have my own patient journey; I live with arthritis and Crohn’s, and, like, that experience with the health care system definitely informed me wanting to go into public health and advocate for others. So, like, while I didn’t have that, like, I’ve been working on the other side, like, feeling that you did, I definitely understand that motivation once it hits you personally.

Ron Howrigon  03:04

Exactly. You know exactly what I’m talking about then.

Zoe Rothblatt  03:06

And then, you know, transitioning to today. So, you founded your consulting firm, and you help doctors fill in the blank for us.

Ron Howrigon  03:15

Well, the bulk of what we do is try to help doctors negotiate fair and equitable reimbursement and contractual terms with the payers. What we tell doctors is we try to help them with the business side of it, so they can focus on what they do well, which is being a doctor. Now, because all of our interactions are revolving their relationship with insurance companies, we get involved in a lot of other stuff: the frustrations over prior authorization, the frustration over denials, how can I communicate better with the insurance company explain what I’m doing, why are they doing this. So, I get a lot of interaction with physicians just dealing with their sense of burnout, their frustration, their really dim out view of the future, which is concerning for me as a potential future patient. It was a survey that came out the other day, and it was just disturbing to me that almost two thirds of all the physicians interviewed, or surveyed, said they would not recommend medicine as a profession for their children. That’s really telling when two thirds of the doctors, who are caring for our patients today, say don’t do this to their kids. And that’s something I think we need to address.

Zoe Rothblatt  04:12

And you attribute a lot of that to the burnout of battling with insurance companies?

Ron Howrigon  04:17

Yeah, it’s the financial pressures. Medicare doesn’t help that, as they keep cutting Doctor Reimbursement. But the bulk of it is the insurance companies. I had one doctor say to me, which was really telling, he said, “When I went into medicine, I thought the medicine was going to be the hard part.” And he was talking about sort of keeping up with clinical advancements, new technologies, etc. He thought that was going to be hard part. And the hard part for him was trying to figure out, ‘how can I care for my patients the way I think they need it, deserve it, and that I want to, with all these barriers and roadblocks that the insurance companies put in front of me?’ I think it’s very frustrating for them. So, to me, that’s the biggest factor to physician burnout.

Zoe Rothblatt  04:53

So aside, I mean, you mentioned prior authorization, that must come up a lot, that comes up a lot in our patient community. What are some of the other common issues that you encounter, when talking with physicians?

Ron Howrigon  05:04

So, the whole process of prior auth is big. The other part of it is the physician having the patient come back in after a retro denial. They got prior authorization, they provided a service, the service was rendered, and then, after the fact, the payer denies it and looks back and says, “Well, I don’t think it was medically necessary,” and now the physician has this awkward situation with their patient of do I as the physician, just eat that bill? What if it’s for an expensive drug or an infusion that I’ve already provided and paid for? I don’t want to bill the patient; they shouldn’t have to deal with this. And so that post payment denial stuff also gets very frustrating. A lot of physicians also get very frustrated with patients, who believe they have good insurance, and then realize that, you know, between deductibles and co insurance, etc, that they don’t have the financial resources to really pay 20% of what is a large bill, or pay the first $5,000 for the deductible. That’s very frustrating for physicians to go, “Look, I know what you need. Unfortunately, you can’t afford that. Now, how do we provide you what care you can afford?” Which is, in many cases, what they think is substandard care.

Zoe Rothblatt  06:04

Totally. I feel like I say this almost on every episode, but it’s like you’re chronically paying for chronic disease, like our community lives with, you know, different types of autoimmune diseases, and those don’t go away. You may go into a remission, but you’re still going to be taking that medication for life, which means you’re paying those co pays for life, and it’s extremely expensive.

Ron Howrigon  06:22

And those are the people who need health insurance most. The young, healthy, 25 year old that goes to the doctor once a year, it’s not that bad for them. Those chronically ill people are the ones who need the insurance the most, and they’re the ones who have the worst time of it, both through the prior off, and all of the different bills, and having a deductible reset every year. You start all over again after you paid it the last time. It can be crushing.

Zoe Rothblatt  06:42

Exactly. Okay, so you have these scenarios, where your insurance is getting in the way of the doctor patient relationship. What do you do? Like, how do you come in and help negotiate?

Ron Howrigon  06:52

So, sometimes we will help try to educate the physician about what the best avenue to try to advocate for their patient is. Sometimes it’s being a listening ear. When they say, “I’m frustrated with this,” and I say, “I understand. That’s the nature of the industry right now.” Explaining to them, how to educate their patients for their rights. Lot of patients don’t know that they have certain rights to appeal things, to complain to the Department of Insurance, to complain to their employer, and just trying to help them understand how to get that voice out there. I had a recent situation in North Carolina with rheumatology, where one of the payers, and it really wasn’t the payers fault, the reimbursement for one of the drugs they used was well below cost, and it had to do with, you know, the government hadn’t set the reimbursement correctly. And so, I helped the rheumatologist sort of draft letters to the payers to explain to them what was going on and how they could address it. They eventually did, which is great, but it’s just helping them understand how to navigate those waters.

Zoe Rothblatt  07:39

That’s great. Yeah, I think it’s like, until you do it once, you don’t really know how to draft these letters or who to send it to, and it can seem really like, big and confusing. And then it’s like, helpful to have a mentor, orsomeone like you, especially because I’m sure you know, like, some of the keywords that insurance is looking for based on your background to navigate that system, right?

Ron Howrigon  08:03

Exactly.

Zoe Rothblatt  08:03

I guess, like, on that note, is it ever like, of ‘I know exactly what they’re doing because I’ve been on the other side of this?’ Are you ever kind of smirking to yourself, like you have the answer?

Ron Howrigon  08:14

I know their motivation and I know why they’re doing things. I recently wrote an article for a sub stack area, and sort of the title was, “Don’t hate the player, hate the game.” And it sort of explained that, look, health insurance companies, especially the for profit companies, in some respects, they’re doing what they should do. They’re trying to maximize their shareholders investment. They’re trying to make as much profit as possible. When we invest in our retirement accounts, we want those things to happen. The problem is that that drive for profit, which every company does, is counter to what the patients need. So, I understand their motivations; I understand why they’re doing it; and I understand all of their tactics. It’s then trying to help those physicians, so they can help their patients counter those tactics, because there’s a real disconnect between what the payers want and what the patient needs.

Zoe Rothblatt  08:56

And do you think something like a universal health plan could help break down some of these incentives, that the insurance company has?

Ron Howrigon  09:03

It could, yeah, it depends on how it’s done. Whenever somebody talks to me, let’s say for about Medicare for all, or something like that, I say, “It’s a tool. If done well, it could do wonderful things. If done poorly, it can do horrible things.” It’s like, people talk about guns are just a tool in the hands of somebody trained to use them; can be a useful tool, but in the hands of a child, it can be very dangerous. Universal health care could get rid of the profit motivation of insurance companies, which is one of the things that creates real harm. It could create other problems depending on how it’s done, but you could absolutely get rid of that profit motivation.

Zoe Rothblatt  09:32

So, chronic disease is, I guess, becoming more popular for a multitude of reasons, and our community lives with chronic disease. So, I’m curious to ask you, like, how have you seen the health care landscape change over the years, when it comes to chronic disease and dealing with these insurance coverage issues?

Ron Howrigon  09:49

So, there’s a couple things that I think have really changed. One is, and this has been true for a long time, is the insurance companies understand that a very small part of their population consumes most of the cost. It’s a really bizzare kind of environment. 5% of the people in this country consume half of all the health care dollars, and the bulk of the people in that 5% are chronically ill. It’s MS, it’s RA, it’s Parkinson’s, it’s things that are chronically ill. It’s not the episodic, you know, I had an ACL repair. So, the insurance companies know that, and they don’t like those patients, because they’re never gonna make money on those patients, so they would like to attract the other 95% of the population and get rid of the 5% of chronically ill with backwards problem. The other is, and this has been a good and bad thing, some of the treatment availability for those chronically ill has been wonderful advancements. You know, when you talk about things like RA and MS, etc, some of the new therapies that we have have really helped people’s quality of life, but they’ve also increased the cost.

Zoe Rothblatt  10:43

Totally. Yeah, just to pause there and put things in perspective, I take a biologic for my diseases, and I always see the price. I think, I pay $5, between insurance and co pay assistance, but I always look at the price, and it’s about $6,000 per month. And like, who can afford that?

Ron Howrigon  11:01

And so that creates a heightened awareness to those chronically ill. And given the incentive that the insurance company doesn’t want those people, they don’t want to have to pay for that, it creates more. That’s why we’ve seen more of the step therapy, the prior auth, to try to get rid of that. Health insurance is a bizarre industry, because when you think about it, health insurance companies finance your health care, that’s why they don’t really provide health care any more than my bank built my house. They financed it, but they don’t want you to use the product. So, if youthink about it’d be similar, like if you went into a bank and said, “Hey, I want to buy a house; I need a loan.” Most time the bank is like, “That’s great. We’re happy,” because they make money when they write more in loans. When it is the insurance companies is the opposite, when you have to spend that $6,000 every month for your biologic, but the insurance company say,”We don’t want you to do that. We’d really not even like you as a customer. We’d be happy if you’d go to somebody else.” That’s where it creates that sort of perverse incentive. The bank wants to help you borrow money because that’s how they make money. The insurance company wants to keep you from using the product because that’s how they lose money. And it just creates a real problem.

Zoe Rothblatt  11:58

And I guess, talk to us about when these utilization management methods, like step therapy, started popping up.

Ron Howrigon  12:05

Well, they started popping up, and it’s been. sort of a. an increase in use over time. Okay, they’ve been around for a long time. They’re just getting heightened; they’re getting better and better, from the payer perspective. The use of computer algorithms and AI has improved that – their ability to sort of target these things. So, they’ve been going on for some time, and as the expense of some of these chronically ill goes up, you know, they just turn up the heat, because, from the payer’s perspective, there’s a massive amount of money to be made, by either reducing the care that gets received by the patients, reducing the cost of it, or frustrating you so much that you go to one of their competitors. You know, I mean, think about it: We buy computers Apple or at an Apple shop, etc, so, when I go to the Apple store with my corporate account, they’re happy – They want me to buy more computers. If Apple has a hard time with service with me and I threaten to go start buying PC, they’re going to want to keep me as a customer. I’ll take you as an example, because you’ve talked about your own biologics, etc. If you threaten your insurance company, say, “Look, if you don’t provide me better service. I’m going to leave your insurance and I’m going to go to one of your competitors.” They would thank you, because they don’t get enough premium to cover your expense. And so you’d be doing them a good thing – That’s such a bizarre thing. And so, that’s why these efforts have stepped up; It’s not just to reduce the cost; It’s to kind of frustrate. The other thing that happens, which is really weird, is you don’t want to be known as the insurance company that’s the easiest one to deal with to get these medications or biologics, because then in communities like yours, it would go, “Hey, you know, choose Cigna or choose Aetna. I can get everything I need. It’s easy. It’s all,” then people will gravitate to them, and they’ll get more of those people than they can afford. That’s called adverse selection. And so it’s this really bizarre thing, where they’re not trying to make their customers happy; They don’t want them to be happy – They actually want them to go somewhere else.

Zoe Rothblatt  13:45

Well, I guess it’s like, where do we go from here? Are we just stuck in this insurance loop of bad incentives?

Ron Howrigon  13:52

Well, I think there’s, like, a lot of problems. There’s another way to solve the problem. The first thing, it’s like anything else, it’s like admitting you have a problem. We’ve got to and you guys are doing a great job of shedding a light to here’s the problem, and at the end of this problem, there’s a real patient like yourself, who’s dealing with a lifelong condition, who’s trying to have as high a quality life as possible, whose physicians are dedicated to do that. And why should you have to fight these fights all the time? So, it’s shedding light on it, and then we can start to explore what are the best solutions. One solution is universal health care. Another solution, if that doesn’t seem to be a viable option, is to either curtail or get rid of or change the way payers can do this. One of the things I’ve advocated is, every time there is a prior auth, review, or a denial, or this isn’t medically necessary, I think that should be reviewed and signed off by a doctor. And, this is the important part, state and federal law should call that act: the act of practicing medicine. Once you do that, the game changes, because then what would happen is, if I’m a medical director for an insurance company, and I have to sign off on saying, “You can’t have that drug,” I’ve got to be practicing within my field of specialty. I can’t practice outside of my field; I have to be licensed in the state I’m working, I have to create a medical record that shows that I reviewed your personal clinical situation. And the big one is, and if I’m wrong and I’ve done damage to you, which your physician, if they prescribe the wrong medication, or whatever faces this, I should build responsible both for my license and for malpractice. Once you do that, it changes the game, because then they can’t do this just blanket denial, these blanket step therapies, or these blanket prior auth things. And so there’s a number of fixes; we got to realize we have a problem, and then start to pursue the solution.

Zoe Rothblatt  15:29

I think you nailed it right there. I hear from a lot of patients in our community that they’re just so frustrated that some, seemingly random, person in insurance gets to deny their medication and, like, they haven’t gone through med school, or seen them, or like their doctor has.

Ron Howrigon  15:44

Yeah. I mean, there was a story that ProPublica did about Cigna. These doctors were signing off on denials, and they were signing off on a denial every 1.2 seconds. Now, you would never accept that if your physician said, “Look, I’m gonna write you a prescription after reviewing your chart for a whole 1.2 seconds,” and your physician would ever do that. Then, why does a physician on the payer side get to do that? Basically, tell you can’t have something. Obviously, they’re not looking at your clinical situation or presentation. They’re just hitting a click button and somebody else is recommending it, usually a nurse, and usually that nurse hasn’t reviewed your situation very much. So, that’s frustrating for the patient – It should be. And that to me, in my opinion, just my opinion, should be illegal.

Zoe Rothblatt  16:21

My opinion too. It’s ridiculous. You know, so our advocacy network, advocates a lot for laws, you know, at the state and federal level that offers step therapy protections, or ban COVID accumulators, and non medical switching, things like that. What’s your opinion on these laws? Do you think they’re making a difference?

Ron Howrigon  16:39

I think they are. It’s one of those things where, and I see the successes in those laws, it’s not nearly fast enough or enough, but it’s helpful. We just need to speed it up and make it more universal or more sticking of, if you will. The problem is the payer lobby is enormous and powerful, and so anytime you start to pursue one of these advancements in the law at a state level or a federal level, you’re met with massive pushback by the payers. And what they say, they’ve got the spin really good is, well, if we do this, health care will become unaffordable. Well, that’s not really true, and sometimes their numbers are questionable at best, but we’ve got to play that game, we’ve got to continue to play at the efforts of your organization, and we just have to keep pushing until we get everywhere we need to be.

Zoe Rothblatt  17:20

Yeah, absolutely. And it can be frustrating at times, because policy change does take so long, right, especially at the federal level, and it’s like years and years of bringing patient groups and provider groups forward to say, exactly what you’re saying, like this is leading to a lot of burnout and suboptimal care for patients.

Ron Howrigon  17:38

That’s one of the reasons why I like this idea, of, because it’s fairly simple to explain, of, hey, if they’re going to sign off it, then make it be the reactive practice in medicine. That’s all I’m asking. Is for that doctor to have the same responsibility than the doctor, who wrote the prescription, or who offered the care. That’s fairly easy to understand and would be fundamental in the change. Now, the payers are going to hate it, because it’ll impact their profits. But the other thing we need to shine a light on is the payer profits have been enormous, just enormous. If you took $100,000 20 years ago and invested it, and I’ll just pick one, because I know the numbers on UnitedHealthcare. Today, do you know how much money you would have from that investment? $9,000,000. 20 years ago, UnitedHealthcare stock was trading at 20 some bucks a share, today, it’s about $450. And it’s split three times. So, anytime a payer talks about health care being unaffordable, if we do this or will this, I have a hard time with that message, because you guys have been making massive amounts of profit. Now, if you have that stock in your retirement account, good for you, you benefited, but that profit has come at the expense of physicians and patients, and that’s the problem I have with it.

Zoe Rothblatt  18:39

Exactly. So, maybe to leave us on a hopeful note, you can share some advice for patients and physicians, who are currently dealing with this process and feeling frustrated?

Ron Howrigon  18:49

Yeah, I guess a couple of things. First of all, I continue to be amazed at the passion and the commitment that physicians have, and I respect that immensely. We are so lucky to have these individuals in our system, and the resiliency of patients, and that’s fantastic. The hopeful note for them is there’s a lot of positive things: the advances in medicine, the science, the new medication, some of the things that are coming out. There’s new drugs coming out for Alzheimer’s that look like they may start to reverse the progression of these – that’s incredible. The advice is, “Don’t quit. Keep pushing,” both for your individual well-being, keeping the same for the doctor, as well as these policy changes, make sure you get active with your representatives. Make sure they understand. It’s much harder to say “No” to some of these advances, when you can put a face to a disease and a condition, you know, like yours, like all the people that are dealing with similar conditions. So, there’s a wonderful Winston Churchill quote that I love, that he said during the middle of the Battle of Britain, which he said, “When you’re going through hell, don’t stop.” And that’s what I told you, is, I know, I know it’s hard, but we’ve got to get to the goal line here, and so don’t stop.

Zoe Rothblatt  19:50

Thank you. I love that messaging. It was great having you on, Ron. Take care.

Ron Howrigon  19:54

Thank you, and keep up the great work.

Steven Newmark  19:57

Well, Zoe, that was a really great discussion with Ron. As Ron said there is such a huge burden on our health care providers, to submit appeals and battle with insurance companies, and it’s unfortunate that this impacts patient care.

Zoe Rothblatt  20:07

100%. It was really powerful to hear Ron’s story about what motivated him to change from working to insurance companies to, you know, helping doctors advocate against these practices.

Steven Newmark  20:18

Well, we hope that you learned something too. And before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  20:26

Well, everyone. Thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help you Make Sense of it all.” If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen.  I’m Zoe Rothblatt.

Steven Newmark  20:40

I’m Steven Newmark. We’ll see you next time.

Narrator  20:46

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:09

Welcome to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week, to Help you Make Sense of it all.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.  And welcome to a special post-election episode of “The Health Advocates.” Today, we’re coming to you, right after the election, to give a quick recap on what’s going on. It’s a special episode, and we’re gonna keep it short, sweet, and snappy. And I’ll be doing it solo today. Well, the polls said the election would be close, and overall, they were right; The election was close. It’s hard to be surprised at the results of the election, when the polls were so close, but it is surprising to have our only second-president to win a non-consecutive term, as well as the oldest elected ever. Donald Trump will be 78 years old, when he takes the oath of office, in January, and he will have support in Congress too, with the Senate flipping from Democrat to Republican.  As we were recording, it’s too early to know the final Senate numbers and the final numbers in the house, but if Republicans take the house, Trump will have a lot to work with. So, how did Trump win? He built a strong coalition and increased his totals, almost universally across the board: in urban, suburban, and rural areas. He increased his vote share amongst Latino and Black voters too. It’s also the first of his three elections, that he won an outright majority of the votes: 51% at the latest count, as we’re recording. So, what does this mean for healthcare, health policy, and chronically ill Americans? Trump definitely cobbled together a team with, shall we say, interesting positions, when it comes to public health. His most notable ally, in the public health sphere, is Robert Kennedy, Jr., who, if I may say, espouses some dangerous views, to say the least. Trump has indicated that he would appoint Robert F. Kennedy, a noted vaccine skeptic, conspiracy theorist, and former independent presidential candidate, to a key role in his administration in the health sphere. Kennedy has already signaled he would seek to remove fluoride from water, work to remove vaccines in certain instances, though, his actual role and plans remain vague.  Trump said last week that he would let Kennedy go, quote “Wild on health, in his administration,” but has not stated what role Kennedy would be appointed to. Kennedy’s stances on vaccine, fluoride, and other health issues have been slammed by health experts and organizations for having roots in conspiracy theories. He has, repeatedly, made false claims that vaccines cause autism, and he chaired the Children’s Health Defense, an organization that says it wants to end childhood health crises, but is a source of vaccine misinformation. He compared vaccine mandates to the Holocaust, in 2022, which he apologized for, and he was previously banned by YouTube and Instagram, for spreading misinformation about the COVID-19 vaccine. Just as a reminder, Kennedy does not have any scientific or medical credentials. Prior to his political career, he was an environmental lawyer. Kennedy put together a platform called ‘Make America Healthy Again.’ So, what’s in it? Well, first off, it is a catchy slogan, ‘Make America Healthy Again.’ And there’s not a doubt, that America could be healthier.  We have short lives, avoidable deaths, and less than stellar access to care. However, the first step is to accurately identify what is causing us to be unhealthy, to fix that. And we won’t make substantial progress if we choose after falsehoods, of course. But the big, [MAHA], that’s ‘Make America Healthy Again,’ talking points: organic food, pesticides, alternative medicine, and going after drug companies, often lack specificity, are riddled with falsehoods, and widen the risk perception gap; focusing on relatively minor issues, while overlooking some significant threats, that shape our public health. One of the most dangerous aspects of the campaign is mixing reasonable statements with outright falsehoods. The combination makes it difficult for the general public to distinguish fact from fiction, and determine where we can get the most bang for our buck. Some examples from the MAHA platform include, Medicaid should pay for three organic meals a day for every American; access to nutritional food is a huge issue in the United States, that part is definitely true. However, there’s no strong evidence to date that organic food is nutritionally superior, necessarily.  Organic food can also be unhealthy – Just because ice cream is organic, for example, doesn’t make it a healthy food. We should definitely prioritize increasing access to nutrient dense foods, and fruits and vegetables is, of course, important, but the misdirection in talking about organic versus nutrient dense, or healthy foods, could be misleading. A second platform is embracing alternative medicine. Many alternative medicines simply don’t work, and more dangerously, may discourage people from seeking actual tested therapies. A third is prohibiting members of U.S. Department of Agriculture Advisory Committee from making money from food or drug companies. While avoiding conflicts of interest is very important, this proposal creates a false dichotomy between expertise, and industry, and excludes valuable knowledge, and expertise. A more balanced approach would involve transparent disclosure and management of potential conflict, distinguishing between conflicts of interest that are handled appropriately versus genuine corruption.  Public health. Trump’s team has called for, quote, “Cleaning up public health agencies.” This sounds a little, like, trimming the fire department, even though there are more houses catching on fire. While we agree that federal agencies need to be more nimble, flexible, and responsible to the needs on the ground, we cannot overlook the existing challenges in public health infrastructure. Trump has called for the weakening of the CDC through restructuring. The Centers for Disease Control, our National Public Health entity, holds the state public health ligaments together, if you will, through data and guidance. If the CDC is weakened, the whole system itself starts to break down, adding more institutions, like proposals to split up the CDC, for example, actually adds to bureaucracy. Institutions need to be cohesive, with sufficient, stable, and efficient funding, if we want them to be more nimble.  So, what about Congress? What about laws that might be passed? Well, House Speaker, Mike Johnson, said just before that the election, that the Affordable Care Act repeal is on the table. Should Trump win, we will see what they will do, and right now, we’ll see how much fight the Democrats have, and in them, should the Republicans seek to actually pursue the repeal of the Affordable Care Act. As part of the 2021 Stimulus Package, Joe Biden and the Democratic Congress adopted expanded subsidies for the Affordable Care Act’s marketplaces. If you were an individual, a small business buying private insurance, the tax credits you received to offset premiums were larger. Subsidies were no longer cut off for people making over 400% of the poverty line, and subsidies for people subsidies for people below that were made far more generous. These provisions were later extended through the end of 2025, as part of the inflation Reduction Act. It’s hard to imagine a Republican Congress voting to extend these measures past next year. We’ll see what happens…I guess. Trump has promised not to cut Medicare, much as he did in 2016, when he first got elected, but his budgets did envision spending reductions, which were mostly minor, and came from cutting provider payments rather than limiting eligibility.  The last time Trump had a Republican majority, he tried extensive cuts to Medicaid and also to food stamps, I should add, but ultimately could not get those cuts passed. Trump waffled on how clear he wanted to be in calling for Medicaid cuts during this election cycle, but when he was clear, last time he was President, the proposals had three steps. The first was to repeal the Affordable Care Act’s Medicaid coverage expansion, and replace it with a block grant for states to spanning. The second was to place a per capita cap on the rest of Medicaid, meaning states would only be granted a set amount per covered person by the federal government. And the third was to impose a work requirement, specifically to require able bodied working individuals to find employment, trained for work or volunteer, in order to receive Medicaid.  Whether Trump can make these plans a reality, really depends strongly on what moderate Republicans feel about them. So, as for what’s in store, from a Trump two administration. Well, we’ll wait and see. But of course, we’re going to keep a close eye on things here at the Global Healthy Living Foundation and make sure everyone is kept up to date. And as always, we’ll make sure to insert the patient voice into any policy decisions that are being made.  Well, thanks for listening to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week, to Help you Make Sense of it All.” If you liked this episode, give us a rating, and write a review on Apple podcast, and hit that subscribe button, wherever you listen – It’ll help more people like you, find us.  I’m Steven Newmark. We’ll see you next time.

Narrator  08:15

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network. Welcome, listeners, to a spooky edition of “The Health Advocates.” I’m Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation.

Zoe Rothblatt  00:18

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF. And that’s right. Today, we are doing something a little bit different; We are diving into the eerie – the unsettling and sometimes downright scary side of health care.

Steven Newmark  00:31

That’s right, it’s time for some health care spooky stories, because what’s spookier than a haunted house? Getting stuck in a scary health care scenario.

Zoe Rothblatt  00:39

A 100%. But also, don’t worry, we’re not here to scare you. We’re here to just share real stories about what can go wrong in the health care world, and, more importantly, how patients like you have spoken up, and advocated for themselves, and turned these scary situations into empowering outcomes.

Steven Newmark  00:56

Exactly. We all know that navigating the health care system can be a real fright, sometimes, from misdiagnoses to medication mix-ups or even getting ghosted by your doctor. There are some truly hair raising experiences out there, but today’s stories aren’t just about things going wrong – They’re about how these patients found the courage to speak up and get the care they deserved.

Zoe Rothblatt  01:14

So, Steven, I spoke to three of our colleagues, who live with different chronic illnesses, about their spooky – turned advocacy health care stories. I’m excited for you all to have a listen and maybe learn a trick or two about advocating. First up, we have Shelley: So, imagine heading out for a nice dinner with your family, only to end the night in the emergency room. The care Shelley received was just confusing, chaotic, and awful; a true health care horror story. So, let’s dive into what happened, and how Shelley had to navigate the confusion to get the right care.  Hi, Shelley.

Shelley Fritz  01:48

Hi, Zoe.

Zoe Rothblatt  01:50

Welcome to our spooky episode of “The Health Advocates.” We’re excited to have you here. And why don’t you start by introducing yourself?

Shelley Fritz  01:58

Hi, I’m Shelley Fritz. I have rheumatoid arthritis, and fibromyalgia, and osteoarthritis, and I am a patient advocate, and I’m happy to share my…Well, I’m not really happy to share my spooky story. I wish I didn’t have so many to choose from to share today.  So, it was April, of 2017, it was actually Easter weekend. It was April 15th, and I remember this date, and I always will, because it was a bad day. So, in the months leading up to April, I had been feeling a little bit funky. I had been feeling like my breathing was just like, a little bit shallow. I was working as a teacher, and I was working with elementary kids, and always on the go.

Zoe Rothblatt  02:38

Yeah.

Shelley Fritz  02:39

And my mother had passed a few months prior, like had passed in the fall, so I was kind of attributing some of the breathing issues to panic and just not dealing with that well. And I wasn’t really sure, but I saw an ENT, and we were doing some tests to try to figure out what was wrong, and we really couldn’t pinpoint it. So, as we’re thinking about more tests we’re gonna do, he had wanted to set me up for those. Now we’re at Saturday, April 15th, and my family decided to go rent a boat and go fishing. So, they all went out, and I stayed home. I wasn’t feeling so well, so it’s just kind of lying around, reading, and just taking it easy. But it wasn’t getting worse, you know, just kind of laying on one side, and I felt uncomfortable moving around, but I didn’t really know what was wrong. I honestly thought maybe I have, like, indigestion (*laughter), and I laugh at that, but I do have that problem sometimes. And sometimes that’s a mistake people make: To think they have indigestion, and then they don’t deal with their problems. So, first lesson learned.

Zoe Rothblatt  03:29

Well, sometimes, also, you’re like, it must be, like, the most simplest, obvious reason, right? Like, I get why your head went to indigestion. Like, sometimes you’re like, oh, it’s the simple, obvious thing; nothing major going on here.

Shelley Fritz  03:42

Exactly. And it’s so complicated when you have chronic illnesses. Especially when you have more than one, and then you’re trying to attribute, what is the cause of this? Is it the medication, I just started? You know. Is it the medication I was last on? What is going on? So, you know, these things are running through my head. But anyway, started to feel better. So much better that that night, we decided to go out to dinner, so we went to the melting pot.

Zoe Rothblatt  04:02

Oh, I love the melting pot. Yeah.

Shelley Fritz  04:06

There’s no way I’m gonna miss this.

Zoe Rothblatt  04:07

*laughter

Shelley Fritz  04:08

So, we went, and it was 45 minutes or so, away from our house, but it’s worth the drive, right?

Zoe Rothblatt  04:14

It is!

Shelley Fritz  04:15

So it’s my husband, and my son, and I. So, we went to dinner, and we’re enjoying the meal. Everything’s going great. And then I’m not feeling well. I’m starting to get that ‘maybe it’s indigestion again,’ but now it’s starting to become more pain, and the pain is in my chest, and it’s, it’s on my left side, specifically, and it’s starting to, like, move into my shoulder blade. Now, I’m getting a little worried that maybe something else is going on. So, I hide my pain pretty well, but not this night, my husband said, “We need to leave, something’s not right.” So, I think we’re going home, right? I’m like, “Oh yeah, we should probably go home and rest.” So, we pack up from the melting pot a little bit early; We don’t even get to the chocolate.  *laughter We leave.

Zoe Rothblatt  04:50

Oh no…

Shelley Fritz  04:51

I know. Bummer.

Zoe Rothblatt  04:52

I’m like, is that the spooky part of the story? We didn’t get dessert?

Shelley Fritz  04:56

Didn’t get dessert, and that’s it.  *laughter So, we started driving. And you know, when you’re in extreme pain, you don’t always, I don’t, I’ll speak for myself, I don’t always make the best decisions, because I can’t think straight. And so, another thing, a lesson learned is have a plan of action with your family, and you know your Emergency Contacts, for when you have an emergency, that potential emergency that could happen one day that you’re not expecting. And so, you know, we had talked about, what hospitals do we go to. We’ve had some bad experiences at different ones, but we were very far away, and my thinking was really strange this day. I said, we have to get my son home so that he can, you know, he’s in high school, he has a lot of stuff to do, we got to get him home, he can’t be with us far away at a hospital; We need to go to that community hospital close to our house. Which, I’m just gonna say without naming it, was not the best choice. So, we pass the first exit to a great hospital, and my husband goes, “Okay, I’m turning off to this hospital.” And I say, “No, no, no, no, no, no, we’re going to this one.” And he disagrees, but I say, “No, I’m adamant.” I can barely speak, mind you. It took me forever to get me in the car, I could barely breathe now. Now, I’m like, crying and I’m panicking because I can barely breathe. I don’t want to breathe, because any type of breath was like, excruciating in my chest, and it was just shooting up into my shoulder blade, and I couldn’t move. So, I was like, stiff as a board, in the back seat, crying. And then I’m just like, I just want to get someplace, to stop the car. Just stop the car. I kept saying, “Just stop the car.” And he’s like, “Well, I can stop it at this hospital.” I said, “No, no, no, you gotta go to the one close to our house.” We’re on this really bumpy road with potholes, and I’m just feel like I’m gonna die.

Zoe Rothblatt  06:31

Oh my gosh.

Shelley Fritz  06:32

I think maybe I’m having a heart attack. I really thought it was a heart attack. And spoiler alert, it wasn’t a heart attack.

Zoe Rothblatt  06:38

Spoiler alert, Shelley is still here with us.

Shelley Fritz  06:41

Yeah, it was not, but it was something potentially fatal, but it was not a heart attack. So, we get to the hospital and go in the emergency room, and anyway, they start running some tests. And one of the first tests they did was they checked to make sure I wasn’t having a heart attack, and they assure me that that wasn’t probably what was going on, because my stats looked pretty good. So, they ran blood work. The blood work came back with a really high D-dimer level. And, if you don’t know, a D-dimer level, that’s high, can indicate the possibility of blood clots.

Zoe Rothblatt  07:09

Oh my gosh.

Shelley Fritz  07:10

So, then I might get blood clots. So, the nurse says, “We’re just gonna run some more tests your D-dimer level.” I have no idea what this is at the time.

Zoe Rothblatt  07:18

Yeah, I’m learning what that is now. I don’t think that’s something most people know until they’re encountering it, unfortunately.

Shelley Fritz  07:25

Right? It wasn’t a possibility in my head, because I just didn’t think that would happen to me, right? So, it comes back high. She says, “We’re gonna send you back for some X-rays.” And so they moved me to the X-ray table, which is excruciating, and but I did learn a great tip, that I’ll share from the X-ray technician. That’s where I learned that, if you’re in a lot of pain and you cross your arms in front of you and then they pull you up, it doesn’t pull on these muscles, right here. So…

Zoe Rothblatt  07:50

Oh…

Shelley Fritz  07:50

…crossing your arms and having your caregiver. or emergency technician. pull you up is a lot more helpful. So. we got the test done and came back, and then all of a sudden there were like five people from the hospital in our little area, in a little cubby area, and they say, “Don’t move. You can’t move her. She has bilateral pulmonary embolisms. You have blood clots in both lungs.” So, I just was, “What is going on?” And then I’m like, “Oh my god, I’m gonna die.” And I just started to panic. My husband was, like, asking a bunch of questions, you know, what does this mean? They started to act weird. They’re like, “We’re just gonna move her upstairs and just, you know, try to keep her still, and we don’t wanna move her too much.” And I’m like, “I can’t move? What is going on? This is horrifying.” So, they moved me upstairs and they gave me morphine to try to stop the pain. And this is where advocacy really came in, because I had a nurse, who hadn’t read my chart, or she didn’t read it thoroughly anyway. She didn’t know that I had the blood clots. She came in, and she immediately didn’t ask me about my pain level. She came in to take my stats, and she pulled me up from a lying down position to a sitting position.

Zoe Rothblatt  08:52

Oh my gosh.

Shelley Fritz  08:52

Just grabbed me from the back and just yanked me up, and it’s like, I think a scream came out, I don’t know, because I could barely even make noises, because I couldn’t breathe well and talk. And I was like, “No!” I just stopped her. I was like, “No, you can’t do that.” She’s like, “I have to take your stats.” And I looked at my husband, so it’s important to have somebody with you, whether it’s your neighbor, just somebody with you to advocate for you. Because I couldn’t speak, I couldn’t voice what I was trying to say, but he knew in my eyes, he’s like, “Look, you can’t move her right now. She’s in so much pain, and this morphine is not working for her.” I said, “Morphine doesn’t work for me. I know from a previous experience, I need something different.” And so she thought I just wanted more medication. And so her response to me was, “Look, lady, we can’t give you more morphine.” I said, “I don’t want any more morphine.” If you don’t want it…

Zoe Rothblatt  09:37

Yeah.

Shelley Fritz  09:37

I need something different. And so nurses changed shifts, and thank goodness. When another nurse came in, I said, “Look, I need another drug classification, then morphine. This doesn’t work for me.” And she listened to me, and she went back and talked to the doctor, and it was hours later, but I finally got another medication, Dilaudid, and that helped me to be able to breathe, and they got me on a blood thinner. And you know, long story short, I’m here today, and I’m doing well, and I don’t have any more issues with that, but I had to go on a treatment for it to help the blood clots dissipate. I made some bad decisions in the moment of crisis, and it’s important to first have a plan and then tell your family, no matter what I say, stick to my plan. But also when you know that there’s a medication that you’re being given, that, you know, doesn’t work for you well, it’s important to speak up and also to have somebody there with you, who can advocate for you.

Zoe Rothblatt  10:27

Yeah, wow. Thank you for sharing that story. Shelley, and that sounds so terrifying. And I think there’s so many elements of your story that just show strength, and like changing course of action when things were going wrong, and realizing that you needed help and relying on those around you, and I’m just so happy that you got the care you need. You’re okay, and hopefully something like that has not happened since…

Shelley Fritz  10:50

No. *laughter

Zoe Rothblatt  10:51

Good.

Shelley Fritz  10:52

It’s been really calm.

Zoe Rothblatt  10:54

Yeah, that is definitely a spooky story.

Shelley Fritz  10:57

Yeah, unfortunately it is.

Zoe Rothblatt  10:59

Yeah.

Shelley Fritz  11:00

Thanks for letting me share it, though.

Zoe Rothblatt  11:01

Yeah, thanks for coming on. And I’m excited for you to hear the rest of the stories, as part of this episode.

Shelley Fritz  11:07

I’m excited to hear them too.

Steven Newmark  11:09

That is definitely a spooky story. Lots of important lessons in Shelley’s story, especially about making a plan with your family for emergencies. I’ll add too, that when choosing hospitals, something to pay attention to is your insurance coverage, and what is in your work and with your plan.

Zoe Rothblatt  11:23

That’s a really good point. And next up, I spoke to Sarah. When Sarah went to her doctor looking for answers instead of getting help, she was told something shocking. Let’s have a listen to what happened.  Hey Sarah, welcome to “The Health Advocates.”

Sarah Shaw  11:37

Thank you, Zoe. I’m really excited to be back for this spooky episode. Let’s get into it.

Zoe Rothblatt  11:42

Yeah, we’re excited to have you. I know you’ve been on before, but it’s been a minute. So, why don’t you introduce yourself to our listeners?

Sarah Shaw  11:50

Well, thank you. Thank you again. I’m Sarah Shaw. I am the Associate Director of Diversity, Equity, and Inclusion at the Global Healthy Living Foundation, and I also happen to be a person living with migraine. I’ve been living with chronic migraine for almost eight years now.

Zoe Rothblatt  12:05

And you have a spooky story to tell us. I’m actually quite excited, because I don’t know what you’re gonna talk about, and we often chat on the side about all things spooky in our health care stories. So, I’m, like, locked in and ready to see which one you picked today.

Sarah Shaw  12:20

There’s so many to choose from and Zoe, it’s been fun and also validating to have on the side conversations about our chronic illness ‘Boo Boos’ through the years. My spooky story is with an old doctor of mine, and it really taught me about the strength of advocating for myself. So, I had been seeing a doctor to help treat my chronic migraine, for about, I think, four years, and it got to the point where my migraines had just been getting worse and worse, and the treatments that I was on weren’t exactly working, or I wasn’t responding to the medication the way that I should have been. And my doctor got to the point where, I think she was really frustrated at that, but she took it out on me and actually called me a problem patient. And that was a really sad and kind of horror in my chapter of dealing with chronic migraine, because not only was I in severe pain, but now my doctor had basically given up on me, and said that there was nothing else that she could do, but didn’t say those words exactly.

Zoe Rothblatt  13:19

Wait, so set the scene for us. Were you just sitting in the room at the doctor’s office on the table, and she just said that to you?

Sarah Shaw  13:27

Yeah, I had, think I had come in for a follow up appointment after trying a newer medication, and she was just going over how I’d been feeling, how I was doing, and I kind of gave her the, “Not good, not well, I’ve had X amount of migraine attacks, and the pain is at this level,” and you could just tell she was getting kind of flustered and frustrated, and just kind of exasperated out. Was just like, “Man, you’re such a problem patient.”

Zoe Rothblatt  13:51

Oh my gosh.

Sarah Shaw  13:51

That really took me, like, off guard, and I was like, it made me feel like I was doing something wrong as a patient, not responding to the medications, and I had used my knowledge as a migraine advocate, of knowing that there were other treatments out there that we could try. And I brought that up to her, even after that comment happened, and she was like, “Oh, well, we can’t try those. We’re just gonna get denied by insurance.” And at that point, I was like, “Okay, this doctor, you know, is not going to be advocating on my behalf. I’m my best advocate.” And so I went home. Well, I cried in the car first, after that happened.

Zoe Rothblatt  14:25

Sarah, we love a cry in the car. Like, I feel like we’re always messaging, ‘Yeah, just cried about my health care year; Just cried about my health care there.’

Sarah Shaw  14:33

Nothing like a good cry, to kind of set the scene and like, inspire, like, I feel like, after a good cry, I’m always more energized to like advocate on behalf of myself and like other patients. So, I went home after my cry, and I was just sitting there, and I was like, “You know what? I’m gonna go find a better doctor. I’m gonna find someone who is going to listen to my needs, who’s not going to give up on me.” And took me a while to not internalize that problem patient comment, that obviously sat with me for a while, and then I found a wonderful doctor, who listens to me. We deal with those same insurance issues that the old doctor was hesitant to work with because, you know, she was like, you’re just gonna get denied. And believe me, me and my doctor, I want to say, every four months, we’re dealing with some other step therapy or prior authorization issue with one of my migraine medications, but every step of the way, she has always reassured me that she’s going to do whatever she can, to make sure we find a treatment plan that works well for me. And you know, I recently just had another issue, and she jumped right on it. And I think, I don’t want to say the moral of the story, but really, I think back to what would have happened if I hadn’t, like spoken up, or if I hadn’t gone home and really thought about, “I deserve better care. I deserve a health care team that’s going to advocate on behalf of me and who I work well with,” and now to this day, unfortunately, the insurance denials are still coming, but I know I have a great teammate in my health care team to advocate with me.

Zoe Rothblatt  16:02

I’m so glad that you have an amazing doctor now. And yeah, I mean, I feel like I can relate to how scary it is in the moment to hear those words, especially with like, the power imbalance of a doctor and patient, you know, like they’re supposed to be the expert, and like one who’s knowledgeable, and like you’re in their hands for care. And while we know a lot as advocates, and because of the work we do, and just living with chronic illness, like you’re never gonna know as much as the doctor, right? So like, if a doctor is sitting there telling you you’re the problem, like part of you is gonna want to believe that, and, like, get really scared.

Sarah Shaw  16:33

Yeah, exactly, exactly. And I think the language that I picked up from my current doctor, which I everyone that I meet in the work that we do here at GHLF is she’s like, “You didn’t fail the medication, the treatment failed you.” And I think that’s a much better way to have a conversation with a patient when every body is literally different. Everyone reacts differently to different treatments, and sometimes it just doesn’t work out. But the onus should never be put on the patient as the problem; It should be, “You know what? It didn’t work out, but we’re gonna keep fighting, to make sure we can get you to feeling more baseline.”

Zoe Rothblatt  17:05

And just to bring it full circle, you know, when you saw your new doctor, who’s amazing. Now, what are the kind of things you said in that first appointment? To speak up and change what had happened in the past.

Sarah Shaw  17:17

Honestly, and I remember it was 2020, yeah, so everything went to telehealth, and I was sitting in the living room in front of my computer, like, sweating profusely, like, so nervous about that first appointment, because I told her exactly what happened. I said, “This is what my last doctor said. And it made me feel, like, really uncomfortable.” And I had that awkward conversation, which wasn’t really awkward, of saying, like, “I want to work with a doctor that’s going to be able to work with me, so I don’t ever fall into that situation again.” And I remember once I said that she was like, “Listen, I’m your cheerleader. We’re gonna be teammates. That situation will not happen.” I wish for every patient to be able to have that conversation and that situation that happens, if they do have bad situations happen, to find the correct providers in your health care team to advocate along with you.

Zoe Rothblatt  18:00

That’s so powerful and such good advice, because you don’t necessarily need to know the path forward of like, what’s next, but you can clearly articulate to your doctor, like, what you don’t want to happen and what happened in the past that was wrong for you. So, thanks, Sarah, for sharing your spooky story with us.

Sarah Shaw  18:17

Thanks, Zoe, for having me on this spooky episode.

Zoe Rothblatt  18:20

Yeah, Sarah, more than happy to have you on as always.  Well. Steven, that was another unsettling story.

Steven Newmark  18:25

Yeah, unfortunately, this happens so often that patient pain gets dismissed, and it can lead to many years in between the onset of symptoms to diagnosis. That’s why the work we do here is so important, to help spread awareness and give people the tools to advocate for themselves, like Sarah did.

Zoe Rothblatt  18:38

It really does happen all too often, and actually, maybe it’s time for my spooky story. I can tell you about a time where things didn’t go as planned for me. I was debating what story to tell you, and Sarah’s story made me remember a time where I felt just like something wasn’t right seeing a doctor. So, are you ready to hear it?

Steven Newmark  18:57

Sure.

Zoe Rothblatt  18:58

You know, as you know, I live with arthritis and Crohn’s, and my specialist was like, “Okay, it’s time to see a dermatologist. It’s really important that you get a skin check every year, just given your diseases and the medications you’re on.” So, I was like, “Okay, that sounds easy enough.” I made the appointment, I saw the dermatologist, she was really late and coming in, and the appointment took a while, like, to actually get started, but, you know, it wasn’t the best experience, it wasn’t the worst, I just moved on. Everything was fine. I hadn’t gone back in a little bit, my rheumatologist was like, “You know, it’s really time to go back and get another skin check. You’re supposed to do these annually.” So, I just thought, “I’ll give that doctor another chance. I’ll go.” So, here’s where things took a turn. I got to the office, and I had waited around 40 minutes, and I went to the front desk and said, “Hey, I’ve been waiting here a while. Like, any idea when the doctor is gonna see me?” They were like, I could tell they were really frustrated; They were like, “Yeah, she does this all the time.” Like, “It’ll be soon.” Like, another 10 minutes go by and now I’m like, “Okay, it’s been basically an hour.” Like. I need to say something, you know…

Steven Newmark  18:58

Oh my gosh.

Zoe Rothblatt  19:02

Like my time is important too.

Steven Newmark  19:55

An hour, wow!

Zoe Rothblatt  19:57

I know. So, I go up and they’re like, “Okay, we’ll get you in a room.” And I don’t know, if you or our listeners, have ever done a skin check, but what happens is that you get completely undressed and you’re just in a gown, because they look at every inch of your body to see if there’s like, moles or, you know, spots of concern. So, they put me in a room, they get me in the gown. Another hour passes of me sitting there waiting for the doctor.

Steven Newmark  20:27

I would have stolen all the cotton balls, at least.

Zoe Rothblatt  20:47

So, the doctor comes in and is like, “Hey, what’s going on? Let’s do a skin test.” And I was like, “Really, you’re two hours late?” And she was like, “What? I am?” And I was like, “Yeah, you’re not gonna say anything?” And she was completely taken aback that I said that. And then, like, she just, like, mumbled a little sorry, like it wasn’t anything that was like meaningful. So, I was like, I’m just gonna sit here get the test done. And I can only guess what was going through her head, when she did what she did next, when trying to, like, change things around in the appointment, maybe. But so she looked at my chart, so I have these other two autoimmune diseases, and she asked me what treatments I’m on, and I take two injections, and she starts to say, “At your age, you shouldn’t be on those – There’s better treatments now.” And it’s like talking about like a newer class of medications, JAK inhibitors, which are great options for patients. But I was just so frustrated, because this isn’t the doctor that treats these conditions, she knows nothing about my plan. I’m like, sitting here…

Steven Newmark  20:55

Wow…

Zoe Rothblatt  20:55

I know. And you know, I was, like, feeling so vulnerable because I’m just, like, sitting in this little paper gown; I didn’t want to pop my head out to say, “What’s going on?” Because I’m like, I’m not dressed appropriately. So, I’m like, “What do I do? What do I do? I’ve already wasted two hours here. Like, I’m not gonna just leave.”  …after two hours undressed, and she’s just telling me what treatments I should or should not be taking.

Steven Newmark  21:51

Oh, man…  Yeah.

Zoe Rothblatt  21:52

Yeah. I mean, your reaction is like, how I felt in the moment, just like, “Oh man, I gotta get out of here. I feel so uncomfortable.” And you know, for the part where things turned around, there was like a bit of time where I didn’t see a dermatologist, and finally, I got the courage to go see one again. And I did a lot of research. And what went into that research was like looking at often on doctors pages, they’ll say, like, ‘What interests the doctor.’ So, you know, I was looking for someone that deals with patients with different chronic diseases. I was reading patient reviews to see if other people had similar situations to me. And I went to this dermatologist, I had a great experience. I even, similar to Sarah, when I got there, I said, “You know, I’ve had a bad experience in the past. This is what I’m here for.” And she was really thorough, and, you know, explained things every step of the way. And my learning from that was just like, 1. If things don’t feel right, trust your gut. I think after that first appointment with the dermatologist, I should have just, because nothing’s good or bad doesn’t mean you should keep going. 2. You know, just because one provider didn’t treat you right, doesn’t mean they all are.

Steven Newmark  22:50

Right.

Zoe Rothblatt  22:50

And then also, you know, if you don’t feel comfortable speaking up, that’s a problem, and it’s really important to find a doctor that will give you the space to speak up.

Steven Newmark  22:59

Yeah, well, at least on a positive note, you learn some things…to say the least, and that’s a good thing going forward. You learn from your experiences, right? As others have also spoken up about too.

Zoe Rothblatt  23:11

Yeah.

Steven Newmark  23:12

Oh, man, it’s wild. I have a relative, who goes to a primary care doctor. Elderly loves the primary care doctor, and she tells me, she waits over an hour every time. And I’m like, “How could you go back?” She said, “I love him.”

Zoe Rothblatt  23:24

Oh my gosh.

Steven Newmark  23:25

“I love him. He’s the best. When you get taken in, he spends a lot of time with you, and that’s the deal. And you know that he does that with everybody else before you, and then when it’s your turn, you get your time too.” And I said, “Well, all right, if you know that going in, you’re willing to accept that, I guess that’s okay.” I would never do that because I don’t have that kind of patience. But everyone’s different. But man, oh, man, to have gone through that without any, I can’t believe there wasn’t, like, barely an apology or something, some mumbling, but wild somehow, cool.

Zoe Rothblatt  23:51

Yeah, exactly. And the whole appointment was, like, lasted five minutes. So, unlike your relative, it was like, I didn’t get the time back in any capacity.

Steven Newmark  23:59

Yeah.

Zoe Rothblatt  24:00

To then be questioning, what my other doctor’s doing when she didn’t even ask for my opinion, like, I’m happy on my treatment.

Steven Newmark  24:07

Oh, man.

Zoe Rothblatt  24:08

That really got me.

Steven Newmark  24:09

I’ll tell you another really quick one. I know someone, who went to a doctor, had, it was for something a little more substantive, I don’t remember the full details, but it was like to inspect something with difficulties swallowing, and got to see a specialist. And you know how that can be, sometimes those super specialists, it’s hard to get an appointment, or it’s they have you waiting. And she was waiting almost two hours as well, including one hour in the room. And she got to the point where she started to leave, and she said, I would like my file. And right away they were like, “No, no, no, we’re so sorry. No, no, the doctors…” Then all of a sudden, the doctor came right in. She said, “No, I’m done. I don’t want to be here anymore. I don’t like the treatment. Been two hours, and nobody’s spoken to me, and I don’t like that. That leaves me with a bad taste in my mouth.” So, anyway, very, very scary.

Zoe Rothblatt  24:49

Yeah, I mean, just walking out, that’s so powerful to say, you know, like, my time is just as valuable. And like, with the power, I was talking about thiswith Sarah, you know, there’s such a power imbalance with, you feel, the doctor is this expert, and has all these credentials, and you should respect them, and feel like, no, you’re the patient and you’re there, like, you and your insurance are paying for this time, like you really should get out of it what you need.

Steven Newmark  25:13

Yeah, it’s a tough situation. I mean, part of it, hate to say it like this, part of it is like, you keep expectations low. Number one, I always bring reading materials with me, something like, okay…

Zoe Rothblatt  25:24

Yeah.

Steven Newmark  25:24

…I’m stuck here, at least I have a book, or work, or my laptop, or something. And also, I do try my best to find doctors that will not keep me waiting, that are notorious for being good about keeping appointments on time. I also, oh, gosh, I don’t want to give away this secret because, but whatever, I always choose the first appointment of the day, whenever I can.

Zoe Rothblatt  25:45

Oh yeah, that’s a good one. It’s kind of like flights too. Like usually, the ones in the morning take off on time, and as the day goes on, it’s delayed.

Steven Newmark  25:54

Totally. Even if the doctor’s stuck in traffic, you’re still the first one. So, how late can it be? The other one, by the way, is the first one after lunch.

Zoe Rothblatt  26:01

Oh, yeah, that’s a good one too.

Steven Newmark  26:02

Yeah, if you could figure that out, although I’ve had like, very like, dare I say nasty receptionist, who say the doctor doesn’t take lunch, she has no time for lunches. I’m like, “Yeah, I’m pretty sure she’s eating something somewhere, along the way. I can’t imagine she’s in here nine hours, but whatever.” And if that’s the case, then that’s really bad for the people coming late in the day.

Zoe Rothblatt  26:18

Well, you know, lastly, we are heading into the MRI machine, which is never a fun place to be. When JP’s scan didn’t and go as planned, she took charge, and fought for the approval she needed. Let’s hear how JP made it happen.  Hey, JP, welcome to our special spooky edition of “The Health Advocates.”

JP Summers  26:37

Hi, Zoe, thank you for having me today!

Zoe Rothblatt  26:39

Well, I’m excited to hear your spooky health care story, but before we dive in, why don’t you introduce yourself to our listeners?

JP Summers  26:47

Sure! My name is JP Summers, I’m the senior patient advocate community outreach manager at the Global Healthy Living Foundation. I’m also someone, who has several chronic conditions, and I’m a caregiver to my mom and my son, who also have chronic conditions.

Zoe Rothblatt  27:00

So yeah, what I’m hearing is, you have a bunch of conditions, and you’re a caregiver. So, there must be a library of spooky stories you could have picked from.

JP Summers  27:09

Yes, definitely.

Zoe Rothblatt  27:11

Let’s hear the one you’re gonna share with us today.

JP Summers  27:13

So, you’re right, there are several stories, but the one out of all of the stories, that I feel is the scariest, and to this day, haunts me, and when I say haunts me, it still gives me a phobia, is when I went in for MRI. During the early stages of my chronic journey, which I didn’t know, I was going to get diagnosed with something, I was sent by the ENT specialist to get some scans. And I’ve had several MRIs before, so it was like, nothing new to me, I’m like, “Oh, that’s a piece of cake.” Well, at that point, I was having two months straight of head pain, nausea, dizziness; I just was not well. So, and I also wasn’t driving, so my mom had taken me to, again, just a regular MRI appointment. I went in the, radiologist just kind of familiarized myself with, okay, this is what we’re gonna do. And as I was laying down, and he was, you know, getting ready to proceed with putting my arms in position and making sure that I was comfortable, I just felt uneasy. And as the machine started up, I started to sweat, and then my heart started racy, which is very unusual, because, again, I’ve had these before. So, I was just kind of laying there, and as the machine was, the part where you lay on, was moving into the MRI machine, my whole body, like I started to shake. I started to just feel uneasy, like my skin was crawling. And I look back and I think, I don’t know if it’s because I was in pain or just simply because of the situation, again, I wasn’t getting any the answers. I was just in this mental state, that wasn’t well at all. And all of a sudden, I dug my hands, or my fingers into my hands so hard, that I left, like, fingernail marks. And I was like crying, and all of a sudden, the radiologist was like, “Are you okay?” And I was screaming, I’m like, “Get me out. Get me out!” Because I was halfway, I’m like, “Get me out of here. Get me out of here!” And so, he’s like, “It’s gonna take, like, a minute at least to pull you out,” and like, and I was hyperventilating, and I was sweating, crying; All these things. My body was just having this bad reaction.  And so he got me out, and I couldn’t stop crying; I was shaking. He was trying to calm me down; Nothing was working. And he was like, “Is there anyone here with you?” And I’m like, “My mom, my mom, my mom.” So, he brought her in, and I just remembered laying there, just bawling. My heart was still racing. And she was like, kind of patting my head, like, you know, “It’s gonna be okay. It’s gonna be okay.” And I’m like, “I can’t do this. I can’t do this.” Like, I can’t go into that MRI machine. And so, after that, again, moment, he goes, “Do you have a history of panic attacks?” I’m like, “No, no, I’ve never had one before.” And he’s like, “Well, it’s safe to say, you’re having one.” And so, we were there for like, at least 30 minutes, before I could get off the table, because I was still, like, just crying and shaking. And so, my mom was, you know, there next to me, just trying to calm me down trying to, like, “It’s going to be okay.” So, in the process of that, the radiologist was like, “Give me a moment, I’m going to make some calls.” He came back to me about 10, it was like, 10 minutes later, and he’s like, “Well, I don’t know how you feel about trying an open MRI?” He’s like, “But there’s going to be a process, because your insurance company.” And I’m like, “Oh, great. Another insurance obstacle,” because already at that point, I was going through several hurdles, just trying to obtain care for myself. And so, he’s like, “Well, I’m gonna type up a report to send to the anti specialist and see if we can get one pre authorized.” And he’s like, “You may have to talk to someone with the insurance company as well.” And I’m like, “I don’t care. I just can’t do this. I can’t going through the MRI machine.” So, I did have to talk to someone. It was like, the next day, the anti specialist put in a request, and the nurse did call me. She’s like, “Okay, you know, we put in requests. We don’t know how long it’s gonna take. Chances are you’re not gonna get approved, because this is not something they tend to do often. You kind of have to, like, be you might have to speak with them.” And at that point, I hadn’t even started advocating yet as a patient.  So, I said, “You know what? Whatever I need to do.” I said, “I cannot go through that MRI machine.” So, I did talk to the insurance company, and then with the note CNT specialist sent, I just said “I had a panic attack. I want to figure out what’s going on with my health. Like something’s not right; I can’t walk unassisted, I’ve gone too much through it with head pain, nausea, dizziness, all these symptoms,” and I’m like, you know, “I really do need to get this test up, because we need to figure out what’s going on with me.” It took almost three weeks. I had to make two additional phone calls, so three phone calls total, to the insurance company, just to vouch for myself, saying “I can’t do a normal MRI. So, it took three weeks to get approved for me to do an open MRI scan, which, I will say this, I did have a little bit of phobia going in, because I’ve never had an open MRI. It is a little bit different; It’s not as open as they say. Because I walked in there, I’m like, say, I looked at it, and I’m like, “I thought, open is like, open.” And it’s like, no, you still go underneath it. So, it’s like, the way it’s it looks, it looks like, it looked like a huge hamburger bun: It’s round, and they put you the middle of it. So, you still have something like this over your face, like it’s this ‘close.’ Like, if you sneeze, you’re gonna hit your head, ‘close.’

Zoe Rothblatt  32:07

Oh my gosh, yeah, that doesn’t sound open.

JP Summers  32:10

No, I had to convince myself, this is to get answers. This is to get answers. You got to do this to get answers. And I had to coach, like, myself through it, like through the process of getting that open MRI. But at the same time, I thought, I cannot believe that I had to be on the phone several times, just to get to this point. And that was something that early in my stages of getting diagnosis, I didn’t realize that this was going to be something I was going to continuously do throughout my journey. But going forward, if I was ever to need the MRI, at least, I now know the process, and that helps me to feel a little bit more comforted with knowing that, I can fight for an open MRI, if need be.

Zoe Rothblatt  32:53

Yeah, I think you’re talking about something so real, that happens a lot with chronic illness that, actually, I’m really glad you’re talking about, because I don’t see it talked about a lot, but a lot of the diagnostic tests are, like, really takes a toll on you. Like, for instance, I have Crohn’s, and I remember thinking how, like, doing the colonoscopy, you have to do a prep, or sometimes even a scan, like, what you’re talking about, there was some weird liquid to drink with it, and it was so uncomfortable, and people just made such light of it, like, “Oh, it’s easy. Just drink this and we’ll get an image.” And you’re sitting there, like, so confused. Like, “Do I just have to endure this? Is this normal?” Like, a lot of the stuff you were talking about, like, “I’m just trying to calm down, like, why can’t I do it?” And it’s like, such a real fear. And I’m really glad you’re talking about this, because, like, the more I think about the more, like, a lot of people just don’t talk about these, like diagnostic tests you have to go through that are really challenging.

JP Summers  33:43

I agree. And being someone that’s gone through several diagnostic testing, I will say that, yeah, there’s that little bit of anxiety already going in. Because, for one, you’re like thinking, “Okay, so now I’m gonna get this test done, but am I gonna be okay with getting the answers that they might have for me afterwards?” But also the prep…

Zoe Rothblatt  34:02

Yeah.

JP Summers  34:02

…the prep going into it. And that’s something, again, as someone. who’s dealt with several conditions getting diagnosed, the prep alone; it’s, it’s like, you know what’s gonna happen. But at the same time, you kind of dread it, because you’re just like, “Oh, you know, I’m gonna have to do this. I can’t eat; fasting.” That’s something, again, that some of us with certain conditions…

Zoe Rothblatt  34:24

Oh yeah. Yeah, and I think what you’re saying is so important, like, it’s okay if you’re having a harder time, and it’s okay to speak up, and ask for options. Because in your case, there was another option, but now you know that for the future. So, I’m really glad that you said, like, we need to stop something’s wrong.

JP Summers  34:25

…you can’t not eat for so long, because it could trigger a migraine attack. Or, you know, so the dehydration, you know, if you weren’t getting enough fluids the day before, and then you have to wait so much long. So, all these factors into, like, can play a role. And that’s another type of anxiety that you can get, because you’re just like thinking, “Oh my gosh, you know, I haven’t eaten in so many hours, and now I have to wait additional, this many hours, before I can even drink anything.” And so those are things, again, that play a factor in that anxiety that build up to again, getting these testing done, that people really don’t understand, or maybe they do understand, but some people just have a harder time because, again, of their conditions. I just, I’ve never had that experience before. I’ve never done that before and again, like you think that would factor into the approval, but it didn’t. So again, I was on the phone several times, and the fact that it took three weeks; three whole weeks, that’s three weeks that I had to wait that much longer to get an answer, to move forward with my, ‘What’s the next step to my treatment? What are we gonna do now?’ And that’s something as a person, not necessarily a patient, I felt was unjust, like I cannot believe that people have to go through this process. It just didn’t seem fair. But at the same time, I learned that I do have a voice, and sometimes you do have to fight for what you need. And now, I know that I’m not afraid to be on the phone, not that I want to be, but it gave me more power over my situation.

Zoe Rothblatt  36:02

Well, I think that’s a beautiful note to end this spooky story on. Thank you for sharing with us and being vulnerable, sharing this hard moment, but also the, how you became an advocate, and spoke up for yourself and others. So, thanks, JP!

JP Summers  36:17

Yes, thank you, Zoe.

Steven Newmark  36:18

Well, thank you to JP, Shelley, and Sarah, for those stories are spooky, scary, but also powerful, in that we’ve learned from them. We’ve learned to advocate; We did advocate, and some, in some of these folks did advocate in these stories. So, there’s the bright line, after October 31st comes November 1st, so.

Zoe Rothblatt  36:36

Exactly, yeah, it’s important, I think, to share these stories, because sometimes, like, when you’re in these situations, you feel so alone. You’re like, “Am I the problem?” Like, what happened to Sarah. “Am I the only one this stuff is happening to?” But unfortunately, when you live with chronic illness and you’re encountering providers, often, like, this stuff does happen. And we’re here to say, you know, you have a voice and you deserve the care that’s right for you. So, we hope you have the tools, through our 50-State Network, to be able to speak up.

Steven Newmark  37:04

Definitely, it’s sometimes about the confidence. And I just want to call out and thank all of our 50-State Network members, for having the courage to speak up, for taking the time and energy to speak up on behalf of themselves and other patients, because as you do that, you strengthen other, all patients, around the country and around the world, and we hope that you learn something about advocating for yourself; even when things don’t go as planned or they seem scary. Before we go, as always, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  37:37

Well, everyone. Thanks for listening to this spooky edition of “The Health Advocates: a Podcast That Breaks Down Major Health News of the Week, to Help you Make Sense of it all.” If you liked this episode, give us a rating, write a review, hit that subscribe button, and e-mail us in your spooky stories.  I’m Zoe Rothblatt.

Steven Newmark  37:53

I’m Steven Newmark. We’ll see you next time.

Narrator  38:02

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:06

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help you Make Sense of it all.” I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach, at GHLF.

Steven Newmark  00:21

Our goal is to help you understand, what’s happening in the health care world, to help you make informed decisions, to live your best life.

Zoe Rothblatt  00:27

And today, we’ll talk about, you know, flu, COVID, respiratory virus season; It’s coming upon us, and so are the fall vaccines. So, let’s get into it.

Steven Newmark  00:37

Let’s get into it. Well, our favorite vaccine, perhaps, the COVID vaccine, and the CDC is recommending everyone ages six months and older, receive an updated 2024/2025, COVID-19 vaccine.

Zoe Rothblatt  00:48

And I know we always have questions from our community, who’s immunocompromised, because of chronic illness, and the questions are usually, you know, “Do I get an extra dose?” Sometimes, you may not have as much immunity as, you know, the average healthy person. So, the CDC recommends talking to your doctor. They say, you can get an additional COVID vaccine, two or more months after taking the last one. But ultimately, that should be a decision with you and your doctor.

Steven Newmark  01:13

That’s a good number to remember, two months though, after from the last recommended vaccine. The updated vaccines are available for Moderna, Pfizer, and Novavax.

Zoe Rothblatt  01:21

Yeah, and you know, the updated vaccine is really to target the new strains, right? So, we know it continues to mutate, and similar to how we address the flu every year, the experts look at what’s circulating, and they plan a vaccine that’s going to, most likely, help against the newest strain.

Steven Newmark  01:38

Yeah, that’s why these new COVID vaccines are called updated vaccines, as opposed to boosters. They’re expected to be updated annually. Boosters, by comparison, are additional doses of the same or previous formula taken to boost immunity.

Zoe Rothblatt  01:50

Exactly! And if you think, you know, “I’ve gotten the shot, I don’t really need to get another one.” I mean, the news is that you have to. It does protect against severe illness, hospitalization, and death. It also enhances immunity that you have, like memory in your body.

Steven Newmark  02:06

Right!

Zoe Rothblatt  02:06

And although COVID infections have declined, and it’s not as intense as the pandemic was, in 2020 or like the few years after, there’s still periods of upticks in hospitalizations. And from what we know about CDC data is that most of the people who were hospitalized had not received the updated vaccine.

Steven Newmark  02:25

Yeah, that’s right. In fact, in 2023, more than 900,000 people were hospitalized in the U.S., due to COVID, and more than 75,000 people died from it; And most of these people had not received the updated shot.

Zoe Rothblatt  02:35

Yeah, and also, I know a big concern in our community is long COVID, and the vaccine also reduces your chance of getting long COVID, because it reduces the severity of the virus.

Steven Newmark  02:46

Yeah, absolutely, that’s a really good point! So, let’s talk about our other favorite seasonal vaccine, I don’t know if COVID is seasonal yet, but well, the flu vaccine certainly is. The CDC recommends that everyone six months of age and older receive an updated flu vaccine.

Zoe Rothblatt  03:00

Yeah, and this one for this year is a trivalent. It’s, ugh, this is so scientific, but if you’re interested: It protects against H1N1, H3N2, and a B/Victoria lineage virus.

Steven Newmark  03:12

Very cool. Wait, so let me just ask you, are you gonna get both at the same time?

Zoe Rothblatt  03:16

I actually did. So, I got it last week.

Steven Newmark  03:19

Whoa, boom!

Zoe Rothblatt  03:20

Yeah.

Steven Newmark  03:21

Wow!

Zoe Rothblatt  03:21

Yeah, I guess I can tell you a little bit about that.

Steven Newmark  03:24

One arm or two?

Zoe Rothblatt  03:25

I did one in each arm. I wasn’t brave enough to do it in the same arm.

Steven Newmark  03:29

Wow.

Zoe Rothblatt  03:30

It went totally fine. I talked to my rheumatologist first about, you know, adjusting my treatment plan, and actually one of my medications, I didn’t have to pause, which I’ve had to pause in the past. So, it’s just good to even if you think, you know, just ask your doctor again. Because I was really excited about that.

Steven Newmark  03:46

Huh.

Zoe Rothblatt  03:46

Okay, so I actually asked the pharmacist, you know, like, are people coming in? Are people getting both? What’s the deal.

Steven Newmark  03:53

Right.

Zoe Rothblatt  03:53

Because I knew we were gonna talk about it, and she said, “Most people are getting both at the same time. Some older adults, their doctor suggested, you know, get COVID now, but come back in a few weeks for the flu.”

Steven Newmark  04:03

Ehh.

Zoe Rothblatt  04:04

And the pharmacist was kind of up in the air about if that’s totally necessary. If you’re gonna come back for the next appointment, sure, but if it’s gonna be a pain to book another appointment, then just get it done at the same time, she said.

Steven Newmark  04:16

Right, right. Interesting.

Zoe Rothblatt  04:17

Yeah. She also said Mondays and Fridays seem to be popular days. So, if you’re in New York City, you might want to book a different day.

Steven Newmark  04:24

Monday and Friday. Okay, yeah, because you do have to sort of plan ahead in that, particularly getting two, it can have the effect of wiping you out, making you tired and drowsy, and what not to mention, a little localized pain in your arm, where the shot is.

Zoe Rothblatt  04:37

And then, actually, there was a few things that were different this year for me. So, one, we’ve had the COVID vaccine card in the past, and even last year, I was still asked about it. But this year, I wasn’t asked about it at all, which was good, because I didn’t even think about finding it, but I realized once I was at the appointment. I also got, you know, when you pick up a prescription and you get those little like scripts with your pills, you know it’s like all information about it, I was handed those about the vaccine, which I’d never been handed before.

Steven Newmark  05:05

Interesting.

Zoe Rothblatt  05:06

So, I got to, like, read up on what I got. And then also, I didn’t have to wait the 10 minutes to see if I had a reaction. She said, just go ahead.

Steven Newmark  05:13

Just get out of here.

Zoe Rothblatt  05:13

Yeah, ha ha.

Steven Newmark  05:14

This is a premium in New York City, I guess. We don’t have time for a waiting area.

Zoe Rothblatt  05:18

Well, I think it’s just, you know now that the COVID vaccines been out a few years, like, we could confidently say, most people aren’t having a reaction at the time of vaccine, so they’ve eliminated that, I guess, protective preventative measure.

Steven Newmark  05:32

Wow! Well, that’s great, that’s exciting! I guess we could go behind the curtain, we’re recording this in late September, I’m planning to get both of my shots in mid-October, so I’ll be right behind you, so to speak, and good to hear that all went well for you, and I’m looking forward to it myself.

Zoe Rothblatt  05:46

Awesome, yeah!

Steven Newmark  05:46

But there are, folks, by the way, you can get vaccinated with the flu without getting a shot now.

Zoe Rothblatt  05:51

Ooh, do tell!

Steven Newmark  05:52

Well, in September, the FDA approved a FluMist, for self or caregiver administration, for prevention of the flu. FluMist, as the name implies, is a mist that is spread into the nose.

Zoe Rothblatt  06:02

Very cool. I was actually looking up on this because I was like, “Oh, is this an option for me?” But actually, it’s not recommended for people, who are immunocompromised right now.

Steven Newmark  06:11

Ehh.

Zoe Rothblatt  06:12

So, I guess this is more like informational for our community, rather than, like, ask your doctor about this.

Steven Newmark  06:18

Yeah, okay, that’s fair enough. I think I prefer the vaccine anyway, I know it’s getting in there. Whenever I use those mists, you know, my nose like, I never know how much I’m getting in and how much is blowing out anyway. I want the full stuff inside my body.

Zoe Rothblatt  06:30

That’s true, yeah.

Steven Newmark  06:31

So, I’ll stick to the injectable. I’ll let the professionals take care of that and get it in me. But still, in all seriousness, it’s good to have more folks out there, more options for the general public, is always a good thing.

Zoe Rothblatt  06:41

Yeah. Also, I saw that, you know, when you look at it compared to the injectable vaccine, there actually is not, like, a consistent answer on which is more protective. There’s obviously more data on the injectable vaccine, because that’s been around and widely used for a long time.

Steven Newmark  06:57

Right.

Zoe Rothblatt  06:57

But there is some evidence, to say that, because the FluMist goes through your nose and the flu also comes in through your nose, that it can have, like, extra protections in like, how deep the respiratory virus goes.

Steven Newmark  07:10

Woah! Okay. Well, it’s good to see now, I guess it’s something we’ll keep our eye on, maybe in five years, we’ll all be taking the mist. And it’s like I said, it’s good to have more options out there for folks, particularly an option where you don’t have to make an appointment, make it more likely that people will follow up on that.

Zoe Rothblatt  07:24

Yeah, actually, it’s available on an online pharmacy, like through the manufacturer, there’s a screening process, and then the pharmacy will prescribe and ship the FluMist. So, it’s a little bit different. You can’t just walk into your regular pharmacy right now to get it, it seems like.

Steven Newmark  07:39

Excellent! Well, in terms of timing, basically, by the time you’re hearing this recording, you should be getting it, approximately, now. The CDC says September/October, the best times for most people to get both vaccines. Obviously, talk with your doctor to get more specifics on that. If you really want to nail down the exact date, that’s quite impossible to do. The exact date would be like two weeks before some cresting of the illness is coming, but it’s impossible to predict with particularity. So, my plan is, personally, to be vaccinated at a high rate before Thanksgiving, for example.

Zoe Rothblatt  08:09

Yeah, I was gonna say that like, you’ve said this in years past, if you’re not having much plans before the holidays, and then the holidays are coming up, it’s a good idea to time it like that. I kind of was of the like, I just want to get it done, so I don’t forget about it, especially because I do have to adjust my treatment a little bit, like I wanted to take that into consideration. When I didn’t have plans, it’s okay to feel a little worse. So yeah, I really feel like it’s just up to the person.

Steven Newmark  08:33

Right, totally! And depending on how you react to vaccines, I’m someone, at least with the COVID vaccine, with the mRNA shots, I am somebody that definitely feels it, and wants to make sure that the next day I’m prepared. That day later, afterwards, as well as into the next morning, at least, I don’t have anything major going on. So, that’s a factor, too.

Zoe Rothblatt  08:50

Yeah. Actually, I only felt a little bit tired; I was surprised at how good I felt. I kind of, actually, I feel like the chronic illness community would relate to this. I feel worse like after, like, the hangover from my regular injections, then I felt from the side effects of the vaccine. It’s almost like, “Yeah, I’m used to getting shots and feeling bad.” It was totally fine.

Steven Newmark  09:11

Right! It’s like, this is so non-scientific to say, but it’s like, sometimes you go out, and you have a drink of alcohol, and you feel just disgusting after, and sometimes you have, like, multiple drinks, and you’re totally fine. There are just factors, that I’m not wise enough to understand, and who knows, but still better to plan for the worst and get lucky.

Zoe Rothblatt  09:31

Also hydrate. Oh my gosh, I drink so much water, and I think that really, really helps.

Steven Newmark  09:35

Okay, there you go. I’ll be doing that. What about the RSV vaccine? How’s that looking?

Zoe Rothblatt  09:39

Yeah, so RSV vaccines, for older adults, were new last year, and they’re recommended for anyone 75 and older, or those 60 and older, who are at high risk. Otherwise, it’s really just available for pregnant women, so you can pass along antibodies to newborns, or babies under eight months. So, for the general population for RSV, there’s no vaccine right now, and we could just think about our other protections, like masking, and hand washing, and distancing.

Steven Newmark  10:09

Yeah, and also, very important: Rapid tests! There’s another round of free rapid tests, that are available, from the federal government. So, you should definitely get your hands on those. Because it’s good to know, when you or someone in your household, is coming down with COVID, to protect yourselves.

Zoe Rothblatt  10:24

Totally! Also, you know, like, especially around the holidays, if you find yourself kind of not feeling well, maybe you can’t get an appointment to test, or things are backed up, not open, it’s good to just like, have the rapid tests, feel confident you could do it, like, get an answer within 15 minutes, and then you can go about your plans or not.

Steven Newmark  10:42

Yeah yeah yeah, my tests have been expiring because I had so many.

Zoe Rothblatt  10:45

Mine too. I just did this round of orders, so I’ll let you know when we get it.

Steven Newmark  10:50

That’s good. Yeah, I found myself like using, I had so many, and I found myself using them, even with like a sniffle, just to make sure. Because I knew that these things were not really useful anymore, or the usefulness was expiring, as well. So, it’s good to resupply.

Zoe Rothblatt  11:04

Well, yeah, just a quick plug also, before we wrap up, our “Informed Immunity” podcast is back, hosted by our colleague, Susan Jara, who’s the Director of Patient Education here. And it’s a podcast that’s just gonna explore the role of community and equity immunization, debunking vaccine myths, navigating the health care system, and latest on vaccine research. So, definitely check it out. We’ll drop a link in the episode description.

Steven Newmark  11:28

Excellent, wow!  Well, you know what? I’m gonna go with that as my learning: I’m learning that I didn’t realize that we had a new season of “Informed Immunity” coming out. So, I’m looking forward to that; Looking forward to learning more on the world of vaccines.

Zoe Rothblatt  11:40

Definitely! And for me, I learned a lot about the FluMist vaccine, in preparation for this podcast, and excited to see, just like, advancements in this space.

Steven Newmark  11:50

Well, we hope that you learned something too. Before we go, we want to encourage everyone to check out all of our podcasts, such as “Informed Immunity,” and more, at ghlf.org/listen

Zoe Rothblatt  12:00

Well, everyone, thanks for listening to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week, to Help you Make Sense of it All.” If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  12:13

I’m Steven Newmark, and we’ll see you next time!

Narrator  12:19

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help you Make Sense of it All.” I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:16

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:20

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions to live your best life. And today, October 10th, is World Sight Day, and happens to be a special episode of the Health Advocates, as we shine a spotlight on this important global awareness day. World Sight Day aims to bring global attention to blindness, eye health, and vision impairment. Eye health is not just a critical aspect of overall health, but especially crucial for those living with chronic conditions, many of which we work on here at GHLF, including newer work in Australia on thyroid eye disease. We’re joined today by two special guests: First, our very own Seth Ginsberg, President of the Global Healthy Living Foundation, and Caroline Casey, President of the International Agency for the Prevention of Blindness. Together, we’ll dive into the significance of World Sight Day, the innovative work being done around the world by these two organizations, and what you can do to protect your vision and advocate for better eye health. So, let’s get started.

Zoe Rothblatt  01:09

Great, I’m excited to have a listen!

Steven Newmark  01:12

Well, thank you both for joining us. Before we dive into the questions, Caroline, can you tell us a little bit about yourself?

Caroline Casey  01:17

Well, that’s a real invitation to an Irish over speaker. I am an Irish woman, I have ocular albinism, I’m registered blind, and I’m a troublemaker of positive kind, I hope. I’m a founder of the world’s biggest business partnership, of 500 CEOs and brands, to end disability exclusion through business, but I am also the very proud President of the International Agency for the Prevention of Blindness.

Steven Newmark  01:42

Excellent! And Seth, and I think most of our listeners know you very well, but to those who don’t, why don’t you tell us a little bit about yourself and the founding of GHLF?

Seth Ginsberg  01:50

Hi, sure! I’m Seth Ginsberg, I’m a co-founder of the Global Healthy Living Foundation. This October 28th will be 25 years, since we began, originally, as an online patient community, one of the first in the world for people with musculoskeletal conditions. And we realized, very early on, that chronic conditions never come alone, and it was best to look at the whole person and have a mission to improve access to care, for people with all forms of chronic illnesses. So, really glad to be doing this, and so lovely to be chatting with Caroline today.

Caroline Casey  02:22

Yeah, two, you’ve got two founders, that’s going to be trouble for you. Two founding troublemakers!

Steven Newmark  02:27

Yeah, well, thanks for that, Seth and Caroline. And great to have you both. Caroline, let’s dive right in. Would you tell us what World Sight Day is all about, and why it’s such a vital day on the Global Health calendar?

Caroline Casey  02:36

Well, World Sight Day is today, so it is the 10th of October, and it’s a great month; it’s my birthday in October, so I love it. But what’s so good about this day, is it’s one day and a moment, to really get the attention of the entire world and focus the attention on our sight, and the issue of sight, and sight loss, and eye health, and eye care, and avoidable sight loss, so everything to do with eyes, and make every person on the planet aware of their sight, and the issue of sight as a socio economic issue, as well as the health issue, as an issue about potential and education. So, we and the International Agency for the Prevention of Blindness (IAPB), so we have over 250 members, who are all working in this sector, and it’s a moment for us to galvanize, to create as much conversation, attention, so that we can deliver impact for the rest of the 364 days of the year.

Steven Newmark  03:28

Excellent! Thanks, Caroline. It sounds like World Sight Day’s mission is really aligned with a lot of the work that we do here at GHLF; to raise awareness and provide educational resources, to people living with chronic disease. Seth, can you share with our listeners why eye health is a significant concern for the chronic disease community.

03:44

Yeah, sure. You’re right, Steven. World Sight Day’s mission is aligned with the work we do here at GHLF, because it’s really about awareness and engagement in our own health and well being. At GHLF, we make sure we’re working for and with people, living with chronic conditions, and a key goal for us is to make sure that they’re more informed, and crucially, more involved in their health, in order to help them put themselves at the center of their own care. So, patient advocacy can be a scary phrase for some folks, but at the end of the day, it really means just that: putting yourself at the center of your own care and speaking up for what can help make a difference for you and, in turn, for others like you. So, eye health is a really vital aspect of overall well being, for people living with chronic diseases. So, you know, many chronic conditions, like diabetes, and rheumatoid arthritis, and thyroid disorders, and even some inflammatory diseases can have a real direct or an indirect impact on eye health, potentially leading to vision impairment or blindness. So, for instance, conditions, like thyroid eye disease and diabetic retinopathy, are common complications that can arise from underlying chronic conditions, and can have consequences related to eye health. In that regard, it’s important for organizations, like GHLF and IAPB to work together, so we can raise awareness about the connections between chronic illness and eye health, so patients can proactively manage their care. Educating the chronic disease community about the importance of regular eye checkups, understanding early symptoms, and advocating for access to innovative treatments, can help empower patients to take charge of their overall health and prevent avoidable vision loss. Addressing eye health is integral to improving overall quality of life, and ensuring that patients have the tools and the knowledge to protect their vision, while also managing and protecting their health with their chronic conditions.

Steven Newmark  05:34

Thanks, Seth. Caroline, I know that you share a lot of these sentiments, especially because you’re doing such incredible work, in promoting eye health worldwide. Can you give us an overview of some of your organization’s current initiatives and the impact that they’re having?

Caroline Casey  05:46

Well, I was just listening to Seth, and I, it’s, I love that we’re having a conversation about how so much of our work overlaps with each other, and finding these intersections or connections, whether it’s between chronic diseases, or chronic health issues and eye health, or in our case, disability, and multiple disabilities, and chronic illness. Nothing in the world is so singular. So, first of all, it’s really important, and I think one of the things, within the International Agency for the Prevention of Blindness. So, of our members, we have members from so many different areas of eye health, and eye care. And so when we’re trying to really mobilize this global connection to the topic, is we have to have very overarching initiatives. So, what we did, which we have loved, is on World Sight Day, we had this campaign, called Love Your Eyes. Now, it sounds really strange because you’re thinking, “Love Your Eyes,” but you’ve heard Seth say it, as humans, we take our sight for granted so much, and particularly if you have a chronic health condition, you’re often dealing with that issue first, right? And you’re not seeing all the other secondary issues that can happen. And so the idea is to take responsibility, or to be aware about looking after your sight. So, when we talk about “Love Your Eyes,” the whole idea is, last year, it was at “Love Your Eyes at Work,” which is trying to get our employers to get screening at your place of employment, so that we can look at the health of our eyes, to catch any diseases, or to understand where our sight is: Do we need glasses? Do we need corrective lenses? This year, it’s “Love Your Eyes for Kids,” right? Which I think is so exciting, because we do know, and for me as a child, right, and so I was diagnosed very, very young. My parents never told me about my sight loss, which is another very interesting story, but I’m very lucky, I’m Irish, I’m middle class, I’m white, I had all of the access to eye house, and you think about what my life is now, if I didn’t have access to that. So, how can we get to kids and diagnose, or get our children tested in schools, early, so we can provide solutions for them. So, that’s what’s very exciting about this year. And it’s not that we’re stopping the work around the employers, but it’s really about getting parents, teachers at school, people who are testing sight, is to get our young kids in getting their eyes tested, because the sooner we can look at diagnosing needs and correcting that need, the better chance a child has at school. And you’ve got to remember, there are 540 million children who have eye issues, that can be corrected. So, why would we have children going needlessly with sight problems, when that does not need to happen? So, there’s the tumor to the biggest, but the biggest point is, if everybody today, please make a pledge, to go and get an eye test, because we’re trying to get as many in the world. Go onto the IAPB website and get involved. And the big one, in which we love this year, is getting young kids to design glasses for the future. So, these are kids under the age of 12 to say, “Can you imagine, in 10-20 years, what glasses look like?” So, to make it fun and make it engaging. So, that’s kind of two of the key areas we’re at.

Steven Newmark  08:37

Well, I’m just curious, what are some of the examples of what our future glasses going to look like?

Caroline Casey  08:41

Have you heard of smart glasses? So, this is so important. You know, when we’re starting to see glasses, where they’ve got cameras in them, and now they have a sense to their own hearing. We have no idea what technology is going to do, but the biggest access issue is really about that we care enough to ask, to ensure that we can advocate for ourselves, to get those eye tests, so that we can get the solutions. And the big thing with the IAPB is to get affordable and accessible eye health to everyone in the world. Because believe it, or believe it or not, there are a billion people on this planet, who are needlessly blind. A billion people. Don’t we have enough issues in the world? We have a solution for this, right? And so this is why our partnership with you is so important, because we can continue to talk to each other, and see that overlap, and how we can speak to patients and humans, and so they can look after their health and be self-advocating.

08:48

Wow. Well, that’s great, Caroline. I know here at GHLF, we recently started addressing eye health head on, through our work on thyroid eye disease, starting down under, as you say, in Australia. Seth, you touched on this a little bit earlier. Could you tell us a little bit more about what thyroid eye disease is and the work that we’re doing around this disease, and how it aimed to support patients in managing their condition?

09:51

I’m really excited to have the opportunity to share a little bit more about this program, but first, to take a step back, for those listening out there, who might not know what it is. Thyroid eye disease is an autoimmune inflammatory disorder, that occurs when your immune system mistakenly attacks the tissue behind your eyes: It causes swelling, redness, and scar tissue, and then that, in turn, can lead to eye bulging, misaligned eyes, and double vision, among other changes, including blindness in rare cases. So, this is why World Sight Day is a great chance to talk about this misunderstood, frankly, condition. And so to start, GHLF introduced a dedicated online resource hub for our Australian thyroid eye disease patients; It’s full of educational insights about the condition and symptoms, how to live with TED, as it’s referred to thyroid eye disease, and resources, importantly, about getting involved as patients and the information that folks need to understand how their voices can be heard, in general, as patients with things, like governmental approval processes for new treatments that are now on the horizon for TED. So, our goal with this hub, is really for thyroid eye disease patients to advocate for themselves effectively, having now been informed and armed with more information about their options related to their conditions. So, we’re going to be working with patients directly, including walking them through the different shared decision making, tips and tricks, as well as a walk around patient advocacy, in Australia, and how treatments get approved. Because, as we know, every health care system is, like, completely different, and Australia has its own unique ins and outs, and we’re quite experienced at this point in those, so we hope to support our Australian community, through this program. But the conversation with you today, Caroline, really, truly highlights the importance of integrating chronic disease management with eye health, especially regarding vision impairment, and blindness prevention. Our TED resource hub is really an essential part of this global effort for us, but we hope it’ll provide the beginnings of support for patients navigating TED’s complex impact on vision, and overall eye health. And just finally, to come back, for a moment, to one other point Caroline was making in the “Love Your Eyes” campaign, and you know, in the youth, especially, which is an incredible way to literally help determine a person’s trajectory in life, not just by health, but in all manners of speaking. Prioritizing eye health, especially in kids, is super important, I say this as a father of young kids, a father who is most known around our house for saying, “Please move that iPad away from your face, at least to the distance of your arm.” I think if I had $1 for every time I said that…

Steven Newmark  11:11

Does that work?

Seth Ginsberg  11:12

…I could fund the whole global campaign. But yes, I think that most importantly, and very seriously, it’s so commendable and GHLF is really excited to be able to work together on raising awareness for this.

Caroline Casey  12:44

But the issue, just to your point about hold that iPad away from you, can I just say, I grew up in a family where I was told to sit away from the television; even the fact that I only have about a half a foot vision. But this issue, that we have so many devices, we, it does make our eyes more vulnerable, and therefore we absolutely need to take responsibility and to ensure that this is not something. Because traditionally, eye health is not seen as something that’s life threatening, so it has not got the priority and the importance of connecting to other issues. So, when in July, of 2021, we were able to get the UN resolution passed by all member states, to have eye health as part of primary health care in every country. Okay, so everybody agrees it needs to happen, but how are we going to make it happen now? And this conversation in itself, the fact that these are two big organizations speaking to each other, it’s about radical collaboration; It’s not about competing with each other. Of what points can we both benefit from this visibility, to ensure that a human being has seen its entirety of all the things as we go from cradle to grave in our life, about our health. So, I think this is why, it’s exciting that we’re seeing so much more collaboration and intersectionality across what our work is. And that’s where I get excited.

Caroline Casey  13:59

Yeah. Caroline, could you elaborate on some of the connections between chronic diseases and vision impairment, and what steps individuals can take to protect their eyesight?

Caroline Casey  14:08

I think, like, when you listen to Seth talking, do you know what the biggest issue for me is? So, I think diabetes, when you hear about diabetes, okay, a lot of people know that if you have diabetes too, your eyes are seriously at risk. The most important thing that we need to do is to have the confidence. This is, I know this sounds crazy, but the confidence to ask questions, to trust your own body when you know something is not right, because I think a lot of us can feel slightly gaslit. Do you know about our health, and is it okay to ask? And what do we need to do? And so this is why your work is so important, because the more information people have access to, in a way that’s understandable and not too convoluted, that means you ask questions. And the thing that I would say, as a person, who is now just coming up to 53years old, and as you get older, there’s lots of other bits and bobs that with you, that you notice aren’t right, it’s having the confidence to ask, so sometimes it’s finding those groups of people, that you know, that you can trust, that you can ask for, or why or reading into an area, for example, menopause. I know this might sound crazy, but when I first got menopause, there were so many things that were going on in my body, and I thought I, there was something wrong with me, until I started to go and talk to different groups, and starting to read up, and taking responsibility for it. But what I will say is there are so many intersections now in our health conditions, and I think that is why organizations, like you and ourselves, are working as a model, that we would love to see happen in many different organizations. But the one that has been most recently obvious is around diabetes and sight loss. Diabetes is one of the most significant reasons for the loss of sight, particularly in the Global South.

Seth Ginsberg  15:40

Totally preventable.

Caroline Casey  15:41

And totally preventable, right?

Seth Ginsberg  15:42

Yeah.

Steven Newmark  15:42

Yeah, that really makes sense. I think you make some important points that speak to how crucial it is for patients to be involved in their health care, as much as possible. Seth, we know that this is the core of what we do at GHLF, which is helping patients put themselves at the center of their care. In that regard, Seth, how do you advocate? How do you help patients advocate for themselves, in playing a role in improving outcomes, when they have chronic conditions, and how that might affect their eye health?

16:06

The big question here. Like I mentioned earlier, at GHLF, our focus is on empowering patients to become active participants in their health care journey. And advocacy is just like a key, key, key component of that empowerment. When patients advocate for themselves, especially in areas like eye health, like we’ve been talking about here, it strengthens that patient provider relationship, and it ensures that these patients unique needs are taken into account. You got to speak up. If you don’t speak up, they’re not going to know. And so, advocacy encourages patients to speak up about their symptoms, ask for best treatment options, and be involved in decisions regarding their care. This is particularly important for chronic conditions that affect eye health, where early intervention, like we’ve been talking about, can literally prevent much more severe outcomes. And speaking up can occur, in so many different venues, and environments, not just with your doctor or the nurse or the health care professional, but at home, in your family, or in your community, or circle, or at your workplace, in the right way, in the right fashion, or with government, because many of us have the opportunity to speak up to government, and raise our voice in productive ways, where we can share our experience, so that the decision makers, the people in government that regulate things, that make laws, all that, take into account what we’re going through and what it’s all about. So, by providing these tools, and educational resources, like this thyroid eye disease hub, just to give it one more plug, in Australia, we’re able to help patients understand the complexities of their conditions and how to navigate the health care system. So, moving forward, we’re committed to expanding these advocacy efforts by fostering stronger patient networks, creating more educational programs, and ensuring patients had the resources to advocate, not just for themselves, but for better system, access to innovative treatments, and to access to care, in general. So, our focus is going to be on that, especially on how patients can get involved through these different shared decision making tools, and talking with government, and things like that. So, we could ultimately help improve people’s quality life with TED, but with so many other conditions that do as a result of under treating or mismanaging, lead to serious eye vision health and impairment.

Steven Newmark  18:18

Thanks, Seth. Yeah, I think that’s very important for patients to hear, whoever is running your advocacy team over there at GHLF, doing a phenomenal job, I would say. Thankfully, there are organizations, like IAPB and GHLF, that patients can turn to for support, and advocacy, and getting involved. Before we go, I have just one final question for each of you.Caroline, looking forward, what are some of the key challenges and opportunities, you and IAPBC? In the field of blindness prevention and eye health promotion, particulary, in the context of chronic disease management.

Caroline Casey  18:47

I think the challenge is also the opportunity. Honestly, it’s like I mentioned earlier on, is that because people don’t recognize, or see eye health as more than the issue of eyes, but because it’s not life threatening, it has never got the importance, really, in the field of health, and yet it’s a socioeconomic issue. This is how we have our eyes can determine the way we live. And Seth said that, and that’s why early intervention and diagnosis is so important. And constantly managing our eyes all the way through our life, it’s really big. So, what I think the biggest opportunity we have right now is to build on what we achieved, with the resolution in the UN. Okay, so we’ve got these member states saying, “Yeah, we’ve got to ensure that eye health care is part of our primary systems.” And Seth was talking about the governments, yes, governments! We do need to make sure primary eye health is part of our primary health care. So, how do we do that? And I think one of the biggest things, that we can do over the next few years, is to have as many partners, where eye health touches across around the world, to help support our government making that possible. So, what are the policy changes they’re going to need to make? What are the interventions they’re going to need to make? How do we release the finance that is going to be able to allow that? But honestly, most importantly is that the world needs to say, “We need to see the future.” Like this is the world’s biggest blind spot, and it intersects so many issues, this is why we’re having this call today. So, for me, it’s the greatest challenge to get people to say “We have to do this.” But on the other side, it’s the greatest opportunity, because this is more than just about these two eyes that we have in our heads, right? This is really about the potential of our citizens, on this planet, to live their very best life. And if we only see eyes separated from the rest of the body, and the rest of the experience, we are making our lives more difficult. We have so many issues right now in the world, so the more that we can work together to see the human experience and the body as a whole, and to support each other, then I do believe we have some chance not to accept, that we continuously avoid dealing with these issues. And I just want to say, I really admire the work that you guys are doing, in GHLF, because as a patient, for lots of different things, and in a family, giving me the courage to ask for help, and giving me the information, and seeing other people do that. Because what we don’t speak about does not get resolved, and what your work is doing is giving people that confidence and the resources to do it, so that we can start having these cross cutting conversations. And I just, never underestimate the importance of giving people the confidence and the courage to stand up for themselves. So, yeah, I just want to say thank you for the work that you guys do. It’s really important.

Steven Newmark  21:25

Yeah, absolutely. Thank you, Caroline. And Seth, any final thoughts, any final words of wisdom, that you would give our listeners today?

21:32

I would first say, I agree, we have this amazing advocacy team at GHLF, and thank you, Caroline, those are kind and thoughtful words, that fill our cups, at GHLF. As we wake up every day, trying to find ways to help, in innovative and impactful ways, and World Sight Day presents an opportunity for us to double down our efforts, and prioritize sight, and understand its seriousness. We take it for granted so easily. I hear that message loud and clear. And you know, when you live with autoimmune diseases, and when you live with various chronic conditions, you know the notion of good days and bad days, and you can get through a bad day, knowing there’s a good day in the future, but if you don’t show up for your health, and if you aren’t empowered, and if you don’t make at least some of the right decisions, there won’t be good days, or certainly not as many as you deserve. So, we want to just say thank you for what you’re doing, and allowing GHLF to join this global effort. We are, humbly, a global organization, who definitely operate on that World Wide Web, in ways that we hope is productive and helpful to support people going through various stages of their situation. And we all have our own situation, as you pointed out. But I think my parting words here for today’s discussion is, “Take care of your sight, check your vision, talk to your doctors and others, about your sight and vision, and recognize that it’s the portal into the rest of your health, potentially, and something that we have to take very seriously today, World Sight Day, but every day.” So, I just appreciate this opportunity, and thank you for allowing us to be involved in it, and raising awareness on key topics, like youth vision, as well as things like thyroid eye disease, and other autoimmune conditions.

Caroline Casey  23:29

And also, get your eyes checked, everyone.

Seth Ginsberg  23:30

Do it.

Caroline Casey  23:31

Get your eyes checked and pledge. Put it onto the website, today, because we’re going to have to get as many commitments to make sure this is one of the biggest World Sight Days ever.

Steven Newmark  23:38

Well, thank you, Seth and Caroline, for joining us today and sharing such valuable insights. I know I’ve learned a lot, but one thing that stuck out is that eye health is deeply connected to overall health, especially for those living with chronic conditions, and it’s important for organizations, like ours and IAPB to work together to bring even more awareness to days like World Sight Day, and important issues like blindness, and visual impairment prevention, and eye health. So, thank you.

Caroline Casey  24:00

Thank you, both, so much. It was an absolute pleasure and Happy World Sight Day.

Steven Newmark  24:04

Thanks again, Steven and Zoe. Appreciate it.

Steven Newmark  24:08

Thank you, Seth and Caroline, for joining us today and sharing such valuable insight.

Zoe Rothblatt  24:11

Yeah, Steven, that was a really great listen, especially, just on the importance of something, like World Sight Day, as an opportunity to bring awareness. I really didn’t know a lot about TED; thyroid eye disease, eye health, before this. So, I’m excited to have heard from Seth and Caroline, and continue spreading awareness on this.

Steven Newmark  24:28

Yeah, same here. Eye health is so important, I know, kind of give me a kick in the pants, because my rheumatologist is always telling me to go see the ophthalmologist, and I’m always like, “yeah, yeah, yeah…yeah, yeah…” but don’t actually, so I need to start doing that more. I do know how important it is, so you know, let’s get on that for all of us, right?

Zoe Rothblatt  24:45

Absolutely. Yeah.

Steven Newmark  24:46

Well, we hope that you learned something too. And before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  24:53

Well, everyone. Thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week to Help you Make Sense of it All.”

Zoe Rothblatt  25:00

If you like this episode, give us a rating, write a review, and hit that subscribe button, wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  25:06

I’m Steven Newmark, and we’ll see you next time.

Narrator  25:12

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast That Breaks Down Major Health News of the Week, to Help You Make Sense of it All.” I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the health care world, to help you make informed decisions, to live your best life.

Zoe Rothblatt  00:26

And today, we’re joined by Estela Mata, the President and CEO of Looms for Lupus (Looms4Lupus), which is a nonprofit organization that provides lupus, fibromyalgia, mental health awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers. I really learned a lot from Estela and her family’s story, how they started Looms for Lupus and the importance of advocacy. We also had a really powerful conversation on finding hope, the impact of community, and raising awareness this Hispanic Heritage Month.

Steven Newmark  00:56

Yeah, I think Estela is fantastic. I’ve been to Washington, DC, been to Capitol Hill, with her. She’s great, and I’m excited to have a listen.

Zoe Rothblatt  01:04

Hi, Estela. Welcome to “The Health Advocates.”

Estela Mata  01:07

Hi, how are you?

Zoe Rothblatt  01:08

I’m good. How are you? Why don’t you start off by introducing yourself to our listeners?

Estela Mata  01:13

Hi, I’m Estela Mata. I am a Co-founder and President of Looms for Lupus, a nonprofit organization that provides advocacy, awareness, education and support to those living with lupus and overlapping conditions, like fibromyalgia and mental health. We support those living with these conditions, their loved ones, and caregivers. So, I’m excited to be here today.

Zoe Rothblatt  01:31

Yeah, we’re so excited to talk to you, learn more about your story, your family’s story, and the work that you do as part of Looms for Lupus. I guess maybe going back, can you talk to us about your connection to lupus, and how you started sharing your and your family’s story?

Estela Mata  01:45

So, it all started in 2009, when my sister, Juana, almost lost her life to lupus. She was not diagnosed until she was very chronically and critically ill. She was diagnosed in the emergency room, which very rarely happens. She had so many symptoms that she had been going through, dating back to 2004, where she got diagnosed with an autoimmune condition: hypothyroidism and then rheumatoid arthritis. And so when she went into the urgent care that day, in 2009, her platelets were very, very low. So, something was literally attacking her body, and now we know that it was lupus that was attacking her platelets. She was originally sent home because they told her, you know, just we’re gonna get routine labs come back tomorrow, typical kind of, like, urgent care visit. But she insisted and persisted, and she was able to have the provider listen to her and get tests done that day, and because of that, she is alive today.

Zoe Rothblatt  02:45

Yeah, it’s remarkable how much advocating, like that, is part of the chronic illness story. I live with two chronic diseases, and I remember being in a similar position of, like, really having to speak up and fight for the care that I need. I’m wondering if you can talk about how you’ve advocated alongside your sister, how you’ve seen her advocate, just like what that’s been like for you.

Estela Mata  03:09

You know, like you said, Zoe, it is very difficult to sometimes get a diagnosis. And I think learning about your symptoms, tracking your symptoms, and, most importantly, using your voice is very important. You know, gaslighting is completely real. So, I could attest to that, because my sister went through that. But about why we advocate: Lupus is a complex autoimmune disease; It could attack literally anything in your body, it could attack your kidneys, your heart, your lungs, your brain, but it also can impact your daily life, right? It could impact your mental health, your physical health, and for me, being able to learn and share our story with my sister. You know, we advocate here at the local level, at the federal level, at the state level, we want to share her story, and we want to empower others to do the same. And that’s why we started advocating, because we wanted to help others.

Zoe Rothblatt  03:57

And what’s it been like connecting with others in the community, through advocacy?

Estela Mata  04:01

Oh, my goodness, it’s been amazing. We’re all like family, and this is one of the things, that I always say, when we connect with the community, you feel heard, you feel seen, and that goes both ways. You know, for us, we want people to see us and hear us, and hear our stories, and learn from them, and then we also get to do the same. We get to listen to their stories, we get to support them, and then we get to, even though we don’t always have the answer, we don’t always have every single resource, we can at least guide them to get the resources or the support that they need.

Zoe Rothblatt  04:32

I totally agree with that! So much of the journey is just about feeling less alone and feeling in it together, and you’re doing that within your family, with your sister, but also in the wider community, with Looms for Lupus, I have so much respect for all that you do. Maybe you could tell us about how you started Looms for Lupus?

Estela Mata  04:50

With Looms for Lupus, we literally just started, exactly the way I told you. My sister was diagnosed with lupus, and it was very difficult to see the challenges that she was facing, and we knew that it wasn’t just going to impact her, right? It was impacting the whole family. And we wanted to be there for those people that were going through the same, more similar situations, like us. So, it was actually two of my sisters and I, so we co-founded the organization; it was Araceli, my younger sister, who is a detective, and Juana, who lives with lupus, and myself. And so, our parents taught us from a young age to always give back, to help others. So, that’s really what we wanted to do. It was an opportunity for us to kind of turn this condition into something positive, right? We can’t change a lot of things, but the one thing that we can change is what we do moving forward, and that was going to be supporting others, learning with others, and engaging with the community, so they can get a better understanding about what lupus is, and get an earlier diagnosis. Especially with lupus, because it does impact everyone differently, and it does impact our Hispanic, Latino community.

Zoe Rothblatt  05:56

And what kinds of things have you learned over the years from the community about, you know, like maybe some common challenges that people with lupus face? You talked about time to diagnosis, so that’s one, maybe. What are some others?

Estela Mata  06:08

So, people that live with lupus, and, you know, face so many challenges, both physical and mental. And at Looms for Lupus, we offer support groups, we offer educational symposiums. Within those symposiums, we talk about disease management, tracking your symptoms, knowing your numbers, knowing what your normal is and when to detect those flare ups. Because with lupus, you know, a lot of stress can trigger flares. We also educate and empower them on how to utilize Stress Management Techniques. So, basically everything from beginning to end, from navigating their health care, to learning about how to advocate for themselves, and learning about potential treatment options.

Zoe Rothblatt  06:47

That’s amazing! And I know Estela, we got introduced because you’re working with some of my colleagues on ‘Awareness of Clinical Trials,’ and I was hoping that we can talk a little bit more about that. Specifically, your and your family’s experience with clinical trials and your advice with kind of navigating something, that can seem so intimidating.

Estela Mata  07:07

As a patient myself and a caregiver to someone that lives with an autoimmune disease, like lupus, it is important for us to not only learn about our conditions, how to help ourselves, but also to learn about current treatments and possible treatment options. And for us, possible treatment options are clinical trials, being able to participate and being able to get that opportunity to try a potential new treatment for a disease, like lupus, to us, is something like, kind of like a instilling hope in someone and saying, “You know, there is an opportunity for you, to not only participate in something that can help you, but something that can help other and future generations.”

Zoe Rothblatt  07:46

I love that message about hope, especially because, like you mentioned, lupus impacts the whole body. So, it really is like tremendous, I guess, like hope and relief to finally find something that works. How have you felt hope in watching your sister’s journey?

Estela Mata  08:01

Actually, my mom’s name is Hope; in Spanish, Esperanza. So, we’ve been living with hope all of our lives, right? We say that.

Zoe Rothblatt  08:08

I love that.

Estela Mata  08:08

One of the things that I saw from the beginning is, my sister never lost hope. Even though lupus was impacting her, like I said, physically, but it was also impacting her emotionally. She started loom knitting. So, it’s a form of knitting, and she was using it as a coping mechanism, to kind of feel a little bit better. Getting diagnosed with lupus, a chronic autoimmune disease that was impacting her daily life, was gonna be a struggle that she was gonna face. We knew there were no FDA approved treatments back then. Now there are, but it still can impact everyone, you know, completely different. So, for me, seeing her that she had hope, even though she was dealing with all of this, gave me hope and inspiration to continue to learn about the condition, to figure out ways on how I can help her, and just be there for her.

Zoe Rothblatt  08:52

Yeah, you guys are lucky to have each other, and it’s so funny you mentioned about the looming, because actually, when I was in the hospital, getting diagnosed with Crohn’s disease, I remember like feeling so antsy and scared and just needing to do something. And I started crocheting a lot. And it’s funny how that, I guess, like doing something with your hands, something tangible that you can have control of. It’s like such a part of the journey, like, when so much is out of your control, doing something like simple and focused, like, helps bring about that hope.

Estela Mata  09:21

Yes! Oh, my goodness! I’m glad that you shared about you crocheting, because when you’re feeling so helpless, you’re feeling so overwhelmed; being focused in that little, small accomplishments, right, even if you get just one loop at a time, right? Like that’s a huge accomplishment, and you’re already focusing on something other than what you are going through and what you’re struggling with. So, you know, for us, when she started loom knitting, it was something that just kind of came in together, because my mom crochets. In Mexico, that’s something very traditional – My mom would crochet, my sister would loom knit, I cannot do either, but I tried. But, you know, just being together and being there for one another, I think has helped us tremendously. And we do have a saying, and we say that, “We’re continuing to knit a community of hope.” We never want to change the name Looms for Lupus, because that’s how we started. Even though, now we have expanded to other conditions, and advocating, and raising more awareness, just an overall, you know, equitable health care access, we still want to do it one loop at a time.

Zoe Rothblatt  10:22

Yeah, I was about to say, even if you may not physically be knitting, you totally are, through the community aspect and providing support through every step of the journey, like you mentioned. And then actually, you just mentioned about other chronic conditions, maybe you could talk to us a little bit about that, like why it’s important to support lupus along with other chronic conditions, and how you came to do that.

Estela Mata  10:44

Raising awareness, not just for lupus, but just, overall, any chronic condition, is very important. Because it impacts us all very differently. We need to be able to learn about these conditions, learn how to prevent them, learn how to navigate them, learn how to navigate, you know, health care access, learn about treatment, treatment options. So, I think that’s with any chronic condition. You know, we need to always be aware and continue to learn.

Zoe Rothblatt  11:13

And you know, you touched on this lightly before, and I’d like to go into it more now, especially because it’s Hispanic Heritage Month. But there’s, of course, an added layer of health disparity, when it comes to lupus in the Hispanic community. Can you, I guess, like talk about what messages you have for the Hispanic Latinx community about the importance of raising awareness?

Estela Mata  11:35

So, raising awareness about health conditions, that are impacting our Latino Hispanic community, is crucial. It is crucial because, you know, the more we learn, the more that we will reduce these health disparities. We will be able to, hopefully, get improved access to care, early diagnosis and just, basically, just empowering individuals to get the support, to get the knowledge that they need.

Zoe Rothblatt  11:59

Absolutely! Early diagnosis is so important. For one, like, you’re obviously uncomfortable and need answers, but two, especially with a condition, like lupus, you can have some, like, pretty permanent damage in different areas of your body, right?

Estela Mata  12:16

Yes, definitely. With lupus, lupus affects, basically, it could impact your whole body, like I said, physically and emotionally. It could impact your brain, it could impact your lungs, it could impact your kidneys, and a lot of the times, it causes irreversible damage. And in many cases, my sister has been really lucky, to be able to get preventative care, and take action with her care team, and preventing that irreversible damage. When lupus was attacking her kidneys, it could have caused her to lose her kidney function, to be in dialysis, and even potentially need an organ. So, for us, prevention has been the key, and her proactive care has been really essential, and her advocating for herself, and her being/taking charge of our health, really.

Zoe Rothblatt  13:01

And what role do you think that advocacy and raising awareness plays in addressing the needs of chronic illness? Especially, in the Hispanic community.

Estela Mata  13:10

Advocacy helps address the needs of the Hispanic communities by ensuring that we receive equitable health care. Everyone deserves to get equitable health care access. To getting culturally competent services, information in our languages; my mom only speaks Spanish, so the information that needs to get provided to her has to be in Spanish. It is also necessary for us to support everyone on how to manage their chronic conditions effectively, right? So, raising awareness, reducing stigma, all of this will empower individuals to not only advocating for themselves, but advocating for their loved ones and the community as a whole.

Zoe Rothblatt  13:47

And what’s your advice for people who, like, want to get started in advocacy and sharing their story, or just get more involved?

Estela Mata  13:54

One of the things that I always say is, “We all have a voice. We have a voice, so let’s use it. Let’s amplify our voices, let’s advocate for ourselves when we go to the provider’s office, when we go to the physicians. Let’s advocate for our communities, let’s advocate for better research, let’s advocate for better health care. Let’s use our voice.” And I think the more we utilize our voices together, the better it is amplified. And change comes with that. So, if we need something, if we want change, we need to be able to speak on it and advocate.

Zoe Rothblatt  14:25

Yeah, absolutely. There’s like nothing more powerful than just sharing a story as a patient. You know, I’ve spent some time advocating with elected officials, and their teams are really smart and can share with them the data all day long. But there’s nothing like getting a personal story to really just say we’re real people, living with chronic illness, and this is how the system, the laws, impact us. So, I would just say, like to amplify what you said, that everyone has a story. You don’t need to be an expert in health care to get started.

Estela Mata  14:55

My sister says this, and it’s so interesting that you said ‘expert.’ My sister says, that she’s an expert in her body.

Zoe Rothblatt  15:02

Yeah.

Estela Mata  15:02

And I think we all are experts. So, they may be the experts in policy making, and running and help run the country. They work for us. So, we’re the experts of our bodies, and we know what we need. What better way to do this, but then by sharing our stories, sharing our needs, and helping solve and create solutions for equitable health care access for everyone, right? So, you’re right. When we meet with the legislators, we can make an impact by sharing our personal journeys, because they’re people like us; they have families, they may be living with chronic conditions themselves, or supporting someone that is. So, you never know how impactful your story can be and how many lives it can touch.

Zoe Rothblatt  15:40

It’s true. Yeah, you never know, like, how closely people are connected. And I also think, you know, there’s something so special about when you share your story; It inspires others to do so, like, just think about how you and your two sisters sitting down, one time, deciding to start Looms for Lupus, and how much it’s grown to inspire others to share as well. It’s, like, really remarkable.

Estela Mata  16:00

Yes! And you know, one of the things for me, too, has always been about having people see us and see themselves in us. Because if there’s a little Hispanic, Latino, little girl, that looks at me and sees that I look like her, or that she looks up to me and says, “You know what, I can do, that.” Maybe they could be doing much better in the future, and they will get inspired, and that’s why we do it. We just want to make sure that everyone’s represented, that our communities are represented, and that we are heard. It’s just one thing that we were raised to do. So, we want to continue to, kind of, add that little layer of support for the community.

Zoe Rothblatt  16:37

And I think that representation and advocacy, that you’re talking about, is also such an important piece of the clinical trial discussion. To have that representation, we know there’s been such a lack of diversity in clinical trials, and for you to be speaking on it, I’m sure encourages others from your community to feel a little bit more confident in making health decisions.

Estela Mata  16:59

I think it’s scary. I mean, just even our family members, they could be hesitant about trying new things. You know, participating in clinical trials, being known as like you’re a guinea pig, or they’re just gonna use you. It’s not about that. I think, you know, education is key when it comes to, you know, participating in clinical trials; we need to learn and understand, what does it entail? The fact that it is optional, the fact that we are giving ourselves the opportunity to get a potential treatment, that we may be the first ones to get, and it could be life changing, and if it doesn’t work for us, it could help others that are dealing with the conditions that we are. So, to me, I just see it more like, it’s hopeful, but we do need more awareness, we need more education, we need to feel empowered, and the way we’re gonna do that is by getting as much information as we can.

Zoe Rothblatt  17:48

Yeah, I think you make a really good point about the intersection of hope and information. Like, we really need to be equipped with good resources, filled with information coming from experts in the field, in order to feel that hope.

Estela Mata  18:02

Yes, definitely. Through experts, and also through patients; through others, living with these conditions or going through it, right? A patient experience is so valuable, and I think it’s so much needed, because thinking about participating in a clinical trial, but I’ve never done it, it could be a little scary. It could be overwhelming to say, “Okay, I’m being committed to participating in a trial for X amount of time. I have to be going X amount of time, or whatever the clinical trial requires me to do.” It could be scary and overwhelming, but if I talk to someone that has gone through that same journey, or is going through the similar journey, they can empower me and give me hope that I can do this, that I can participate and that I can make a difference. So, yes, hope is definitely, I guess, the beacon of light that we need, right? To guide us through these dark tunnels, that we go through and that boost, that we need.

Zoe Rothblatt  18:52

Yeah, I love that! Well, I guess, I know you’ve given us so much words of hope, but maybe for the last question, just any final, just like, thoughts of hope you want to share with the community, for any listeners, struggling right now, looking for a piece of that light?

Estela Mata  19:06

One of the things, my younger sister, Araceli, created for us was a little slogan. And I guess they do this, you know, maybe when they’re in academy or something like that. But she created a slogan that says, “Never give in, never give up, never let go. Just keep fighting.” So, that’s what I want to leave everyone with, that message. So, not giving up, don’t give up. If you are diagnosed with a chronic or autoimmune condition, it does not define who you are; it is just simply a part of your life. And just keep fighting, keep fighting for better treatments, keep fighting for, just for, everything, just keep fighting for yourself. And that’s really how I want to leave it. Just “Never give in, never give up, never let go. Just keep fighting.”

Zoe Rothblatt  19:48

That’s beautiful! And yeah, I guess just know that, like, we’re also here, there’s a community here, fighting with you.

Estela Mata  19:55

Yes! You are not alone; you are not alone in this life. Dealing with a chronic condition can be difficult, but we can do this together.

Zoe Rothblatt  20:03

Absolutely! Well, Estela, thank you so much for joining us today!

Estela Mata  20:07

Thank you, Zoe!

Steven Newmark  20:10

Wow, Zoe, that was a really great discussion, with Estela. I normally ask, “What you learned?,” but I’m gonna start off by saying, that I really learned a lot about clinical trials, and it was great to hear a deeper dive on the discussion of clinical trials and how it impacts patients.

Zoe Rothblatt  20:24

Yeah! And also, on that note, just really quickly for our listeners, we’re launching a lot of resources about clinical trials, especially for lupus patients. So, if you want to sign up for the newsletter, we’ll leave a link in the show notes. And also from Estela, you know, I just love the message of hope she left us with. It’s so important to community build, and really appreciate all the work she does with Looms for Lupus.

Steven Newmark  20:46

Absolutely! Well, we hope that you learned something too, and before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  20:55

Well, everyone, thanks for listening to “The Health Advocates: a Podcast That Breaks Down Major Health News of the Week to Help You Make Sense of it All.” If you like this episode, give us a rating, write a review, and hit that subscribe button, wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  21:08

I’m Steven Newmark. We’ll see you next time.

Narrator  21:14

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help You Make Sense of it All.” I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach, at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life.

Zoe Rothblatt  00:26

And today, we’re really lucky. We have two special guests to talk about asthma and their work with the Lung Health Foundation: Jessica Buckley and Dawn Bowdish. So, a little bit about the two of them, before we dive in. Jessica is the President and Chief Executive Officer of the Lung Health Foundation, and she’s focused on building lasting relationships across Canada with other similar organizations, governments, health care providers, researchers, and patients. So, similar what we do, to fill the Lung Health Foundation’s missions of improving lung health for all Canadians. And we’re also joined by Dr. Dawn Bowdish, who’s the Executive Director of the Firestone Institute for Respiratory Health at St. Joseph’s Healthcare Hamilton. And she’s an academic researcher; she brings more than 10 years of research into immunology and aging to discussion; and she also serves as the scientific advisor and board member for the Lung Health Foundation.

Steven Newmark  01:20

Wow! This should be exciting! Can’t wait to have a listen.

Steven Newmark  01:23

And just in time for Asthma Peak Week.

01:26

Hi Jessica and Dawn! Welcome to “the Health Advocates.”

Dr. Dawn Bowdish  01:29

Hello!

Jessica Buckley  01:30

Hi, Zoe. Thank you very much!

Zoe Rothblatt  01:32

Why don’t you both start off by introducing yourselves? Let’s start off with Dawn and then Jessica.

Dr. Dawn Bowdish  01:37

Hi, I’m Dr. Dawn Bowdish. I’m the Executive Director of the Firestone Institute for respiratory health. I’m a scientist, and I’m also a member of the Board of Directors of the Lung Health Foundation.

Zoe Rothblatt  01:47

And Jessica.

Jessica Buckley  01:48

I am Jessica Buckley, I am the President and CEO of the Lung Health Foundation in Canada.

Zoe Rothblatt  01:54

And Jessica, can you tell us a little bit more about the Lung Health Foundation?

Jessica Buckley  01:58

Yes! So, the Lung Health Foundation is a national charity, dedicated to the lung health of all Canadians. We invest in research, we do federal and provincial advocacy, we do awareness campaigns, develop clinical tools for health care professionals, and we also provide programs for people with lived experience and their caregivers.

Zoe Rothblatt  02:19

Thank you so much for the work that you do to help patients. And I know we’re going to talk a lot about asthma today, but first, I just wanted to start off, I guess, learning about each of your personal journeys and what kind of drew you each to lung health advocacy.

Jessica Buckley  02:33

Well, I’ll start. Zoe, thank you. I was very moved by the work of the Lung Health foundation, after learning about them, and realizing and connecting the dots that lung health has sprinkled throughout my family many, many times through the years. Having family that have suffered from asthma, others living with chronic obstructive pulmonary disease, also known as COPD, and having lost a few family members to lung cancer, also knowing that one in five Canadians are affected by lung disease, there’s just a huge amount of need.

Dr. Dawn Bowdish  03:06

My journey was through my research path. So, I did my Ph.D. and my postdoctoral training in respiratory infections, and when I started my own research lab at McMaster University, one of the first grants I got was for the lung health foundation trying to understand respiratory infections in older adults. And I was invited to a gala dinner to celebrate this research grant, and sat beside two people who were suffering from lung disease – young mom of three who had lung cancer, and a young woman who had lung fibrosis and had just received a lung transplant. I was so moved by their stories, and their graciousness and generosity in congratulating me for my award, even though my research was from sort of the late end of life, and they had this really immediate need.

Dr. Dawn Bowdish  03:53

And I was also really touched by stories of how having lung cancer was a really fundamentally different experience than having breast cancer, because there was so much blame attack. People are always asking about whether you smoked and this and that, and so that really was such an inspiring night for me. I bowed at that point, that I would help the Lung Health foundation raise the $50,000 that I got as a research grant. But then I couldn’t stop, because it became apparent to me that as a researcher, so underfunded compared to other conditions and diseases, despite the huge impact it has on people. And so that really ignited my passion to work with the Lung Health Foundation, to do advocacy, to increase research funding, to increase awareness. And I can’t perceive stopping doing that anytime soon, because I don’t perceive it becoming a more equal world for lung health anytime soon.

Zoe Rothblatt  04:42

That’s amazing, and I so appreciate how each of you pointed to a specific patient story: Jessica, with your family, and Dawn meeting that family at the event. Something that we always say here is like, “No active advocacy is too small, and sharing your story is just so powerful, because every patient has a unique story.” And you know, when you’re meeting with, let’s say, like legislators or trying to just like, make changes, it can be really intimidating to try and get all the facts. And we remind patients, like, “You’re the expert, your story is what’s powerful.” And I think that’s like really becoming clear in what both of you are saying, how it led you to do this work. So, you know, just thank you for highlighting the patient voice. So, let’s go back to maybe some basics. Dawn, I’ll throw this one to you: Can you tell us, like the basics of asthma, how one gets it, how to treat it, how it changes over time, stuff like that?

Dr. Dawn Bowdish  05:34

Sure! So, asthma is defined as variable airway obstruction, which basically variable means it’s not constant, so it comes and goes, and it can be triggered, and I’ll talk about that in a second, and airway obstruction, meaning that the airways can’t do their job breathing properly. We know that asthma is extremely common. As many as 10% of children may have asthma, but it’s also very unfair. So, in Canada, we know some of our indigenous communities, as an example, can be up to 30% of children can have asthma. And then in adults in Canada, it can be between six and 10%, but again, higher in some communities, as opposed to others.

Dr. Dawn Bowdish  06:08

To understand why there’s so much range in who gets asthma and who doesn’t we have to understand how it starts. So, believe it or not, predisposition to asthma starts before you’re born. So, when a woman is pregnant, if she has exposure to air pollution, tobacco smoke – then those babies might be more at risk of having asthma. We also know there’s a genetic link, so if you have a family history, you’re more likely to develop asthma, and then once you’re born, we know that asthma can be triggered by many different factors. So, one of the features of asthma is that the lungs are a little bit fundamentally different, but exposures to things like allergens, or in this world, climate change and wildfire smoke, sometimes exercise, sometimes cold, dry air can trigger, what many patients call, an asthma attack, or we often call an asthma exacerbation. And so that’s a really acute event that can lead to the airways spasming. It can lead to production of mucus and phlegm and lead to that horrible breathless feeling and that feeling of cough.

Dr. Dawn Bowdish  07:06

So, diagnosis you would think for such a common condition would be really simple, but it actually can be quite complicated. For really young children, it’s almost impossible to get them to do a breathing test. So, basically, doctors have to get a really detailed history of what that child’s asthma attacks feel like. They have to listen to hear, if they can hear wheeziness, and then they can try a treatment, and if the child gets better, it’s assumed that asthma was the cause. On the other end of life, in late life, asthma can be difficult to diagnose and treat as well, because there may be other lung conditions that are also happening at the same time. So, COPD and asthma often travel together. And so, surprisingly, like I said, it can require a really detailed investigation to get to the bottom of that. And then within asthma, there are different sort of levels; if someone whose asthma can be controlled pretty easily and they don’t really have their daily life effective, would be considered a mild asthma case. But then some people have very, very severe asthma, and they need to go a really detailed investigation from a respirologist to get the proper diagnosis and then the proper treatments that they need.

Zoe Rothblatt  08:08

Thank you for that overview, that’s really helpful. And I’m curious from both of you, and maybe we’ll start with Jessica. When you talk to people living with asthma, are there like common topics or themes that arise that you’re seeing among these like patient populations?

Jessica Buckley  08:22

Yes. So, one of the common themes that arises is really what is a lack of an asthma action plan, and that’s when people living with asthma are feeling great and they’re not taking their regular medication and inhalers, and they might be quite reliant on what we would consider our reliever inhaler and not using the maintenance program. So, the importance of having your asthma under control is something that we speak to people about a lot, and have tools on our website to help speak to your health care professional about putting an asthma action plan in place.

Zoe Rothblatt  08:57

Yeah, and can you tell us a little bit more about the action plan and like, what typically goes into that.

Jessica Buckley  09:03

So, it’s the truth is that we want all children and people living with asthma to be able to live their full lives. And often, children with asthma may be told to sit on the sidelines during gym class, or not exert themselves, or not participate in sports. And we just know that if they have an action plan in place, where they are taking the medication on a regular basis, as is prescribed by their health care professional. Any triggers that come into play, and Professor Bowdish was speaking about some of the triggers, like allergens from pets or wildfire smoke or anything that may trigger their asthma, they would have their asthma more under control and not experience those triggers in the same way. And we have a great example, currently, who is our Brand Ambassador for the Lung Health Foundation, Maggie McNeil is a world champion swimmer and competing at that high, high level, with asthma. And just incredibly inspiring to what is possible, when you have a very effective asthma action plan.

Zoe Rothblatt  10:05

Absolutely! Well, not to kind of jump ahead, but that leads me into my next question. So, I know you all had a survey done, that was of more than 2,000 Canadians, and one of the findings showed that only 24% of respondents were confident that you can have an active life if you have a lung condition. And what you just said about Maggie McNeil is like proof that you can have an active life. And I’m just wondering, Dawn like, what’s your reaction to this statistic that only 24% are confident in that?

Dr. Dawn Bowdish  10:36

Well, I think it depends on the lung issue in question, but certainly with asthma, the goal is, if your asthma is under control and you’re getting the appropriate medications, the goal is you should be able to be an athlete and have an absolutely active life. In fact, we have sort of a checklist that’s used. And if you’re up at night, because of your asthma, more than one night a week; if you have more than two days a week, you have to take your rescue medication; if you are not able to do the exercise that you would like to do, then that is definitely time to talk to your practitioner, and hopefully a respirologist.

Dr. Dawn Bowdish  11:10

Gets the appropriate medications, because asthma should be something that you can live with, but live well with. And I think a lot of the misconceptions are outdated, frankly, but they’re a real challenge, and one can’t help but to be sympathetic for people who are living with these lung conditions, because that feeling of breathlessness is terrifying, and you want to avoid it at all costs, because it is such a scary and horrible feeling. And certainly, people who’ve had such a severe asthma attack, that they’ve gone to the hospital, are really cautious about never wanting to have that experience again. So, I would say that if you’re struggling and not meeting those criteria, it’s time to have an appointment with respirologist or a pulmonologist and really make sure you’re getting the appropriate treatments and medication to live a completely full life.

Zoe Rothblatt  11:55

Absolutely! Yeah, what I’m hearing from you is that, 100% of asthma patients should feel confident that they can have some sort of active life, and if you don’t, then it’s time to talk to your doctor and reconsider the ways you’ve been treating your asthma and think about what more there is to do.

Dr. Dawn Bowdish  12:11

That’s right! And I would also add to that there is room for bigger advocacy as well. We’re moving to a point in time where wildfire smoke is going to be more common; climate change is obviously something that’s affecting that; air pollution is a problem too. Those triggers are a lot harder to avoid than things like allergens, you know you’re allergic to. And so I think there’s a lot of room for patients living with lung disease to help do the political advocacy to get those bigger problems under control rather.

Zoe Rothblatt  12:40

Yeah. Can you talk to us a little bit more about, like, navigating these changes? And you mentioned the wildfires, this episode will come out during Asthma Peak Week, like a time when there’s an increase in asthma symptoms, and I guess, like, how patients can be better equipped to navigate these changes.

Dr. Dawn Bowdish  12:58

Patients living with asthma really need to think about air quality. So, many weather reports, and weather stations, and weather apps now also include an air quality measure. And for all of us, with or without asthma, we need to think about changing our behaviors when that air quality is poor, and unfortunately, because of wildfires and climate change, we’re going to have more of those days. So, when air quality is really poor, we need to think about staying indoors, if we’re able. We need to think about exercising less outdoors. And people with asthma might have to take that to the extreme.

Dr. Dawn Bowdish  13:29

We also have to think about improving indoor air quality during those difficult times. So, air filters, if one can afford them. But again, there’s sort of a personal, but there’s also a bigger picture question here too, because, of course, people who have jobs that are outside, people who can’t afford air conditioning and air filters and those sorts of things, renters, as opposed to owners, are less empowered to make those changes to their buildings they live in. So, we have to think about ourselves, but we also have to think about our society adapting to those changes as well. Some of the easier things to avoid, if you have asthma or known triggers, for example, if you have a specific allergen you know you’re susceptible to, then you might have to make some decisions about not being exposed to that allergen, even if it means getting rid of a cherished pet or, you know, making some other lifestyle decisions. And those are changes that can be made that can really help reduce the frequency of asthma attacks.

Zoe Rothblatt  14:20

It seems like there’s a lot to learn about asthma and that it’s really unique to each person. And I wanted to highlight another one of the survey findings revealed that, “94% of respondents agreed that there needs to be more education done, to get people informed about lung health.” And Jessica, I wanted to ask you how Lung Health Foundation, you know, helps provide education to people and some of the health policies that you advocate for?

Jessica Buckley  14:48

Yes! So, I think that most definitely, lung health has been overlooked by all of us. And the truth behind that is that, historically, there has been a stigma associated with specific lung diseases. And because of that, it has been an overlooked and underfunded area of health, but so incredibly important. I mean, just being able to think about the fact that we take around 22,000 breaths per day as humans, and how important our breath is to everything that we do. So, we do a lot of national advocacy and provincial advocacy in Canada, some of the policies that we advocate for picking up on the comments from Professor Bowdish around air quality. I mean, it’s such a massive cross border, world concern, on outdoor air quality, and is going to take all levels of government worldwide to be able to improve outdoor air quality.

Jessica Buckley  15:45

We do advocate for that, of course, but we’re focused on indoor air quality and helping people be able to afford HEPA filters with certain lung conditions, etc, and advocating for patients that way. Some of the other policies we’re focused on are one of the biggest way that youth in Canada are affecting their lung health right now, is we are amongst the highest in the world on youth vaping rates. And smoking rates have declined in that population, which is fantastic to see, all the great work that’s been done to decrease smoking in that category of people, but the vaping rates are skyrocketing, unfortunately. So, the future effects of vaping on their lung health are yet to be known, but early indicators are that it’s not a good outlook, and these are some of the other policies that we’re advocating for around youth vaping rates, and decreasing access, and something called a smoke free generation, which would make it illegal for children born after a certain year to ever purchase tobacco, or nicotine, or vaping products.

Zoe Rothblatt  16:49

Yeah, I mean, thank you so much for the advocacy you do. It’s so important, especially for a youth population, which is just so vulnerable to like trends and not particularly understanding the depths of what they’re doing at such a young age. I think it’s like so important to have people like you spreading awareness and advocating at the local and national level, like you mentioned. And on that awareness, Lung Health Foundation recently launched the ‘Our Lungs Make Our Lives’ Campaign. Can you tell us about this and what you hope people will take away from it?

Jessica Buckley  17:21

Yes, we are very excited about our new brand campaign, that really just to make people think about their lungs, and the power of our lungs, and the moments that happen in your everyday life, that are powered because of your breath. And thinking about them in a way where you appreciate what they bring to your life and want to protect them. And I think messaging around lung health, in the past, has maybe been more focused on the disease, versus just thinking about your lungs and protecting them. And we really wanted to change the narrative and get people thinking about that, that our lungs make our lives.

Zoe Rothblatt  17:58

Awesome! I love that so much. I mean, it’s something so simple that you just take for granted, that you’re able to breathe nicely. And I know everyone’s had that experience when you get over a cold and you can have a clear nose and throat, and you’re like, “I’m never gonna take that for granted again.” Like new lease on life, like whatever phrase you want to say, and slowly you forget, and it just becomes something you take for granted, and it’s important to cherish, like, our health while, like, we have it. I think what you’re saying of like, just getting people to notice their health and, like, even healthy people, like, take notice of your lungs and the good that it’s doing for you. I love that messaging.

Jessica Buckley  18:35

That’s it! And people, typically, don’t think about their lungs. And to your point, until you have a short respiratory illness, and then suddenly you’re thinking about it; or someone in your family is diagnosed with respiratory disease, and then you’re focused on it. But it’s appreciating, how we need to protect them every day and at all costs, and getting that message through to our governments and others to be able to improve the world around us as it relates to our lung health.

Zoe Rothblatt  19:04

On that note, I wanted to conclude. First, I’ll ask Dawn, and then throw it to you, Jessica. What is your advice or message of hope for people living with asthma?

Dr. Dawn Bowdish  19:14

One of the things I’m really excited about is there are a slew of new treatments being developed and that are being used. So, once upon a time, people with severe asthma had very few options to help treat them, and as a consequence, they really did have the quality of their life really significantly impacted. But in the past five, seven years, suddenly there’s been a number of new treatments that target the immune parts that go wrong, and these have to be used really precisely. They have to be used just for the right patient. But when they, they work, they work beautifully. And so I’m really excited that those people who, 15 years ago would have really had their lives contracted by having asthma, now have fuller and more complete lives. And the research is ongoing, and I suspect we’ll see a number of new treatments hit the market in the next five years, as well.

Zoe Rothblatt  20:05

That’s really exciting. And I guess my add on to that is just like, ask your doctor about new treatment options, because you might not know about great options that you haven’t considered yet. And Jessica, what’s your message of hope or advice?

Jessica Buckley  20:17

So, I think there is a lot of hope. And regardless of living with asthma, our lung health can be improved. So, managing with a very effective asthma action plan and speaking with your doctor and your health care professional, being diligent about avoiding triggers, etc., there is a lot of hope. And our website is lunghealth.ca which includes the asthma action plan, there is a back to school plan, for children, specifically, as children return to school, this in the coming weeks. And there’s often a spike of asthma symptoms amongst children when they do return to school. So, getting on top of that now, as you prepare for back to school, we do have a very effective tool on our website to help.

Zoe Rothblatt  21:01

Awesome, thank you. Yeah, that was the last thing I was gonna ask you, is where everyone can find you and keep up with you. But you just mentioned the website, so, perfect. And unless Dawn, do you have another resource to add?

Dr. Dawn Bowdish  21:11

I think that website is great. I mean, patients use it all the time, and people go to it all the time because it’s clear, easy to understand, really easy to use. And I would just echo Jessica and that everyone should have an asthma action plan, because it’s been shown that if you have one, you’re less likely to have exacerbations that could end you up in the hospital or having severe outcomes. So, an action plan is essential.

Zoe Rothblatt  21:32

Awesome. Thank you both so much for joining us on “The Health Advocates.”

Jessica Buckley  21:36

Thank you very much, Zoe. Greatly appreciate it!

Dr. Dawn Bowdish  21:39

Thank you so much. It’s been a pleasure!

Steven Newmark  21:42

Well, Zoe, that was a really great discussion with Dawn and Jessica, particularly around the work the Lung Health Foundation is doing to support people with asthma and bring more public awareness to our breath.

Zoe Rothblatt  21:50

And for me, it was interesting to hear about the common themes that arise when people talk about asthma, especially the concerns around exercise and living an active life.

Steven Newmark  22:00

Yeah, absolutely! Well, we have a gold medalist, who has dealt with asthma, so you can live an active life for sure. Well, we hope that you learn something too. And before we go, we definitely want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  22:13

Well, everyone. Thanks for listening to “The Health Advocates: A Podcast that Breaks Down Major Health News of the Week, to Help You Make Sense of it All.” If you liked this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  22:26

I’m Steven Newmark. We’ll see you next time.

Narrator  22:32

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the healthcare world, to help you make informed decisions to live your best life. And today, we’re joined by Yvan Baker, member of the House of Commons of Canada. Yvan and I are going to talk a little bit about some of the issues that Canadians are dealing with in terms of healthcare, and what some of what Member Baker is doing to address Canadians’ healthcare needs.

Zoe Rothblatt  00:42

Great. Well, I’m excited to have a listen.

Steven Newmark  00:45

Well, welcome Mr. Baker. We really appreciate your being here. It’s an exciting bio that you have. You’re so young. Before we get into a discussion a little bit about Canadian healthcare and what you’re doing to improveimprove  the lives of Canadian citizens vis a vis healthcare, could you just tell us a little bit about yourself, a little bit about your background and why you decided to pursue public service.

Yvan Baker  01:04

Yeah, you bet. Well, Steven, first of all, thank you very, very much for having me. It’s real honor to be on the podcast. I am the member of parliament for Etobicoke center. Etobicoke is a suburban community in the western side of the city of Toronto, and so I represent a community of about 120,000 people in Canada’s parliament. I’m with the governing Liberal Party. I’m a member of the Standing Committee on Finance, and I chair something called the Canada Ukraine Parliamentary Friendship Group. And in the last few years, that particular group of MPs and senators in Canada has played an important role in trying to support the Ukrainian people in their fight against Russia’s invasion. So I’ve taken a lead on that. Prior to this, I was a member of Provincial Parliament for the same community in Etobicoke. And prior to that, I was a management consultant. I worked for the Boston Consulting Group. I spent some of my time with BCG in Toronto, a little bit in New York as well. And I also had the chance to teach as part of the MBA program at the Schulich School of Business at York University here in Toronto.

Steven Newmark  01:56

That’s interesting, just to get into healthcare, what is your currentinterest in healthcare. And if I may ask a follow up, what led you to an interest in healthcare?

Yvan Baker  02:05

You know, I ran for office because when I was a management consultant, when I was in business, when I was in doing my university studies, I would often, as many people do, volunteer for various charities or nonprofits that try to make a difference for folks on a range of issues. And one of the things that I realized pretty quickly as a volunteer is that on so many of the issues that I cared about, it was really government that had the ability to make the greatest impact in solving those problems. And so that’s really what led me to volunteer into politics, get involved a little bit, take an interest, and then eventually run for public office, first as a provincial representative and now as a federal representative. So in terms of your question about about healthcare, first of all, my family has a philosophy that health is – there are a few things in life that are more important than health, that without health, there’s really no happiness. And in Canada, we have a universal healthcare system. So government plays a particularly important role in the quality of healthcare and therefore  the quality of life that people have. And when I started running for office, when I was elected to office, I interacted with hundreds, 1000s of people in my community, and what I would hear from them consistently were concerns, views, suggestions, advocacy on the issue of healthcare, what we could do better, how we could improve the quality of healthcare in this country. So those are really the key reasons that I took an interest in healthcare. It’s something that’s really important to folks, and it’s something that the government of Canada can really impact significantly because of our universal healthcare system and that’s really why I spent a lot of my time on that issue.

Steven Newmark  03:29

There’s something you said, I’m going to butcher it, so apologies, but it’s something that we talk about a lot, something to the effect of, there’s no entity that can impact as many people’s lives as government. When government decides to put its full weight behind something, whether it’s in the field of healthcare, the environment, sanitation, whatever the case may be, there’s really no substitute for what a government can do with the right resources. And it’s so true what you said, and we talk about that all the time on our show, on our podcast, which is why it’s so important for patients to advocate to their governments for improved healthcare, to improve their lives.

Yvan Baker  03:59

Yeah, absolutely. I think that’s true in most countries around the world, and I think it’s especially true in places like Canada, where, like I said, we have a healthcare system that is universal. There are gaps in that system, but, but it is, broadly speaking, a universal healthcare system. Canadians have come to rely on the healthcare system that is provided through the single payer system that we have. And so the beauty of a universal healthcare system is that there is universal access for most essential healthcare services and needs.  But the flip side of that is, is that when a patient is dissatisfied with that care, whether it’s the quality of care, the accessibility of that care, the speed of accessing that care, then the solution very rarely can they simply pay out of pocket and resolve that problem, as you might in different healthcare systems around the world.  The onus is on government to address that, whether it’s a doctor shortage or a specialist shortage or the quality of care, and we can talk about that more if you’d like. So to your point, government plays an important role, but it’s a particularly important role in the context of healthcare in our country.

Steven Newmark  04:53

Yeah, you talked about the gaps. Not all basic needs, like eye care or dental care are covered completely under most universal healthcare systems. Can you talk about efforts being made to fill some of the gaps in Canada?

Yvan Baker  05:04

Yeah, absolutely. So you nailed it right? Our universal healthcare system has gaps in it, and that’s common to, I think most universal healthcare systems aroundthe world. What I would say, for the benefit of your listeners, is, I would say that in Canada, the way I think about it is essential care is covered things like hospital care, emergency care, family doctor, essential tests and screens and procedures and those sorts of things, an elective, non-essential care is not covered. But there are gaps that in some of those areas of what I would consider essential care. So there are services that aren’t covered. You talked about it, dental care, eye care, until recently have not been part of the universal system. There are also procedures that are considered important, but perhaps not as critical, not as urgent, and are sometimes depending on risk factors and other factors, cost factors may not be covered for some folks, and sometimes people face delays in getting services that are essential. So that essential service may be covered, but you may have to wait months or even years, in some cases, to receive that care if it’s not urgent. So there’s some of the gaps, I think, going back to your question in terms of what’s being done to address I mean, first and foremost, what we’re trying to do is make sure that those services, where there are those wait times, that those get shortened. In Canada, the healthcare system is actually the jurisdiction of the provinces, and the federal government provides a lot of the funding for healthcare, so it is something that the provinces own and execute, have jurisdiction over, but the federal government plays a big role in. And what our federal government has done over the last few years is, said, we want to plug more of those gaps in the healthcare system. One of them is dental care, and so that’s one of the areas that you know, I’d love to talk to you about more if you’re interested, but we’re doing a bunch of things to try to make sure that we’re also improving the quality of care. One of the things I’m proudest of as an MP is, you know, as an MP, you’re an advocate. You’re trying to get the government to do things better, and I’m not the one who makes the decisions, but I certainly try to advocate for those decisions to be made. And one of the things I’m proud of is that I was one of the MPs who fought very hard, successfully, to convince the government to tie funding that we provide to the provincial governments, that the federal government provides to the provinces to results. So instead of sort of just cutting a check every few years for healthcare and giving to the provinces and saying, off you go spend it as you see fit. Let’s tie that to certain outcomes for patients, whether it’s access doctors or certain care providers and those sorts of things. But obviously, the biggest thing that we’re doing in terms of plugging gaps is the creation of the new Canada dental care program. It’s the biggest expansion of healthcare, of the universal healthcare system in Canada since the inception of universal healthcare in this country.

Steven Newmark  07:14

Can you describe what that entails, what the current plan provides, and what you’re hoping to achieve?

Yvan Baker  07:19

Currently if we take a step back in terms of dental care, I mean, we know dental care is so important to people’s broader health, it’s not just about their oral health. But you spend a lot of time on your podcast talking about chronic illnesses, and you know, and I have to say that, you know, dental care, if I think about your listeners, who are experts, who are patients, others concerned about chronic illnesses, I’ve got to believe that for them, you know, dental care is something that they value, or can see value in as a preventative measure to prevent some of those chronic illnesses. But the plan for the Dental Care program is basically that people who have a family income under $90,000 and don’t currently have private dental insurance will qualify for the program, and virtually all essential, let’s just say, essential dental services oral care will be covered. So preventative services, like scaling, polishing, diagnostic services, restorative services, prosthodontic services, removal of dentures, deep scaling, oral surgery, the list goes on. So we’re really covering a pretty comprehensive set of services, and it’s specifically targeted at those who have family incomes under $90,000 and don’t currently have private insurance. The reason this is, is because the goal here is to prioritize those folks who currently aren’t accessing dental care because of the cost of dental care.

Steven Newmark  08:28

You said it beautifully, dental care is healthcare. What goes on in your mouth really affects your entire body. So it is important not to neglect dental care, and it really should be part of more comprehensive healthcare around the world, not just in Canada, so that’s fantastic. You’re also doing a lot of work to strengthen support for seniors. Can you share why it’s important for you to devote so much time and energy to senior citizens?

Yvan Baker  08:49

There’s a number of reasons. I mean, one is because I think that seniors play an important role in my community, play important role in our country, in communities that your listeners are in, but I also think that they have contributed a lot, and we owe it to them to provide them with the best possible quality of life that we can. And healthcare is an important part of that. I work a lot with seniors because I also appreciate the wisdom and perspective that they offer on whether it’s issues of healthcare or things that touch them or things that touch people of all ages and backgrounds. In my community, we have one of the largest percentages of proportions of seniors in Canada. So I have a lot more seniors than most of my colleagues who are members of parliament. And so seniors issues are of particular importance to me, because that’s what’s important to my constituents. But also, going back to our earlier conversation, Steven, you know, we were talking about the role of government. And again, when we think about what I hear from seniors, a lot about is issues like healthcare, like housing, like transportation,  and those are things where government can really move the dial in terms of the quality of life that seniors enjoy. Pensions is another one. So these are some of the reasons why I spend a lot of time working with seniors. I hold a monthly seniors advisory group meeting where the purpose of these is really to hear from seniors about what’s important to them, answer questions, take advice on how we could improve. And you know, we were talking about dental care a moment ago, I’ve been elected for almost 10 years in public office, and you know, dental care was one of the first things I started to hear from seniors about, not just for the medical benefits that we talked about, but just from an affordability perspective. I know a lot of folks around the world, a lot of your listeners in different countries around the world are struggling with inflation, cost of living. My constituents are whether it’s housing or daily cost of living, and one of the expenses that touches seniors the most is those dental care expenses, especially when there’s unexpected need for dental care. Some have insurance through their pensions programs or through private means, but very often, the most expensive services have to be paid for by seniors out of pocket. So in all those ways, this is why I work with seniors. They deserve the support we need to support we need to support them. They’re a large percent of the population, but also, government can really impact their quality of life.

Steven Newmark  10:45

Well, first of all, it’s fantastic all the work that you’re doing on behalf of Canadians and particularly your constituents. And with that, I just want to wrap up by asking, let me just say, a lot of what we do here on the podcast at GHLF is to encourage patients to share their stories with elected officials. Can you talk to us as an elected official about what it’s like meeting with constituents and why patient voices matter?

Yvan Baker  11:05

When I first got elected, Steven, my predecessor as the representative for the community, as the member Provincial Parliament, gave me a piece of advice. She said to me, you know, a lot of people see their elected officials speaking at a speech, at an event, maybe on a podcast, and we kind of get accustomed to having to thinking that politicians are there, kind of to talk, to communicate in some form, and that’s certainly part of the job. But she said to me, the most important part of a politician’s job is to listen, because when you listen, you understand what people’s priorities are, what their concerns are, but you also hear the ideas that you need to solve these problems. No member of parliament, no congressman, no representative, has the solutions to all of the problems that people are facing. And so to your question around why it’s so important to hear patient voices, it’s kind of for those reasons, right? Like whether you live in a country with a universal healthcare system, or you pay privately, or a combination of both, the reality is, is that whoever’s responsible for that healthcare system is only going to improve that system if they know what those problems are, and if they’re motivated and held accountable to solve it. In the case of a universal healthcare system like the one we have in Canada, it’s the elected officials at the provincial and federal level who are accountable for the quality and the services that are provided, even if you’re not in that situation. I think it’s important that patients are communicating what’s working what’s not working for them, and pushing the healthcare providers to be responsible,  to make sure that we improve that system, because there is no happiness without healthcare.

Steven Newmark  12:17

Wow. I want to tattoo that somewhere, not on my body. Though there is no happiness of healthcare, I love it. I love it. Well, with that, thank you so much, Mr. Baker, we’re so appreciative for all that you’re doing, and thank you for taking your time to come on the show.

Yvan Baker  12:30

Steven, thanks for having me. It’s been an honor.

Zoe Rothblatt  12:34

Well, Steven, that was a really great discussion with Yvan. It’s interesting to hear about, you know what issues crosses the borders and just a reminder that it’s always important to hear from constituents.

Steven Newmark  12:45

Yeah, absolutely, like you said, for me, it’s always instructive to talk directly with elected officials and to hear from them, and it’s fantastic when they tell us how important it is to hear directly from their constituent patients. So with that, we hope that you learned something too. And before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  13:05

well, everyone. Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt

Steven Newmark  13:18

I’m Steven Newmark. We’ll see you next time,

Narrator  13:24

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation,

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. Today, we are joined by Amanda Krzepicki, Policy Director of the Autoimmune Association. Amanda is based in Washington, and spends much of her time on Capitol Hill, advocating for patients. The Autoimmune Association helps autoimmune patients by sponsoring research, advocating for access to healthcare, and fostering collaboration to identify and explore the common threads that link autoimmune diseases. Like the Global Healthy Living Foundation, the Autoimmune Association works around the world, not just here in the US, to help patients.

Zoe Rothblatt  00:53

Great. I’m excited to have a listen, Steven.

Steven Newmark  00:55

All right, well, let’s get into it. Welcome Amanda, thanks for coming.

Amanda Krzepicki  00:59

Thank you so much for having me, Steven. It’s great to be here.

Steven Newmark  01:01

Yeah, why don’t you start by telling our audience a little bit about yourself, how you got into patient advocacy, and we’ll go from there.

Amanda Krzepicki  01:07

Yeah, absolutely. So to give you a little bit of background about myself, I started my career working in a federally qualified health center where I worked with patients who are directly impacted by burdensome utilization management practices. I actually managed a mobile dental clinic, which went around to local elementary schools, and I saw children without their parents.

Steven Newmark  01:27

Where was this?

Amanda Krzepicki  01:28

Alexandria City in Virginia.

Steven Newmark  01:30

Excellent.

Amanda Krzepicki  01:31

So, I saw all these students without their parents on a mobile dental clinic. You can only imagine the level of screaming I had to deal with on a day to day basis.

Steven Newmark  01:31

Oh my gosh.

Amanda Krzepicki  01:32

So, working on the bus, I teamed up with the school nurses and providers to make calls on behalf of patients, to try to argue prior authorizations, and I truly felt the frustrations of the system from the ground up. It was a really eye opening experience to see children experience these inequities, and I was doing this job while concurrently getting my Master’s of Public Health degree. So this really kind of pushed me to do that in the policy space. So I had another internship where I did Medicaid insurance policy for a while, and then I got my feet wet with my first job in the private sector where I represented a few patient groups as well as nonprofits, before coming in house at Autoimmune.

Steven Newmark  02:21

Wow. So tell us a little bit about the Autoimmune Association. Many of our patients, as I’m sure you’re aware, and by extension, many of our listeners, live with an autoimmune condition. So tell us about the Autoimmune Association.

Amanda Krzepicki  02:31

Yeah, absolutely. The Autoimmune Association is the world’s leading nonprofit organization dedicated to autoimmune awareness, advocacy, education, and research. We represent over 50 million Americans, and you know, more research needs to be done to get a worldwide estimate with over 100 diseases, many of which are rare. So we’ve had a lot of resources on our website to help patients. We actually just developed a new question prompt list to help patients have more effective meetings with their doctors, and I’m currently in the process of revamping our policy page and our legislative action center to get our patients more involved in changing the healthcare system so it works better for them their families.

Steven Newmark  03:08

Wow. Well, that’s, uh, fantastic, and thank you for doing all that you do. So you’re based in Washington. Can you provide our patients some information on the basics of how legislation works, how patients can help influence legislators to come up with more patient, friendly outcomes?

Amanda Krzepicki  03:24

Yeah, absolutely. So unfortunately, I have to tell everyone, first and foremost, you have to throw away everything you learned in civics class and from School House Rock.

Steven Newmark  03:31

What? How a bill becomes a law? I can’t watch the video.

Amanda Krzepicki  03:34

Right, no. I truly wish it was as simple as that song makes it out to be. But you know, with recently, the house has kind of thrown away normal order, and it takes years for things to kind of change in the healthcare system. So initially you need an individual, more likely, an organization, group of organizations, to come up with legislation. In this case, a bill that is an idea that improves the healthcare system. That’s what we hope for that it would improve the healthcare system. So you have to take this bill to Congress and have meetings with various legislators to see if this bill aligns with their priorities. So sometimes you have to do research on what they’ve worked on in the past. It helps if you’re working with committees of jurisdiction like Health, Senate, Finance, Ways and Means in the house and Energy and Commerce to see if there are members there who care about the same issue that you care about. Once you find a member, ideally, one on each side of the aisle and one in both the House and Senate, or two. I guess in both the House and Senate, you have them introduce the bill. That is the hardest step, and can take years in itself. But after you have a bill introduced, then you need to put an effort shopping around additional sponsors or co sponsors, so more members that are engaged in this bill and wanted to move once you kind of have a majority of members or a couple committees who think it’s really important, they might take the bill up for a markup where every member on that committee has an opportunity to kind of change the text of the bill to have it as they see fit. Once you have the markup, then you have the hearing, then you have the final vote with each side, so the House and the Senate, and per chance, if those markups maybe didn’t go your way, and you’ve got two different bills on each side, then they need to conference those changes. And as you can imagine, all of this takes years, so it’s the coming up with the idea then having the members of Congress work on the issue, getting it up to a vote, getting it out of the House and Senate, and eventually getting it to the President’s desk. So, you know, it is a huge accomplishment for bills to get passed.

Steven Newmark  05:33

Yeah. First of all, that was a really good overview. I have to say, how bill becomes a law, 101, it does remind me of the cartoon. It also reminds me of Mr. Smith Goes to Washington. I hope I’m not dating myself too much, but yeah, that really is how it’s done. Obviously, there’s more to it than that.

Amanda Krzepicki  05:47

A little Yeah? I mean, we left out all the midnight conferences and the sneaky changing up the text right before the other party can see it. But you know, those are just the fun little tidbits you get working in DC, right?

Steven Newmark  05:58

Those don’t make it into the cartoon.

Amanda Krzepicki  05:59

Yeah.

Steven Newmark  05:59

But no, no, no. That’s right. That’s the basics of it. And like you said, it takes years. That’s something that we always stress. It’s you don’t just go to Washington and tell your story and expect a piece of legislation to become law a few weeks later. It takes a long time, and sometimes it’s just a matter of introducing yourself to your local legislators and continuing on over the course of many years. Do you have any good examples from your career of a great victory worth noting, worth talking about?

Amanda Krzepicki  06:25

Yeah, actually, very recently. So there’s the Medicaid drug rebate program, which recently had a proposed policy change come out. And this policy change would kind of affect how patients get their medication, because it’s a very complicated process to very quickly explain, but I like to very quickly refer to it as a shower thought. So I feel like somebody woke up one morning, had this idea where they were in the shower, thought it was a great quick fix to a problem, and then forgot to kind of think the idea all the way through, think about the unintended consequences. So there’s this specific policy in the mdrp where they wanted to stack all of the rebates that pharmaceutical manufacturers have across the system and make that the best price for Medicaid, which would bring, frankly, the price to zero. Which sounds like a really fabulous idea, you know, when you say it quickly.

Amanda Krzepicki  07:14

But what the unintended consequences would likely be like, all of these rebates that patients are getting to make their drugs affordable for them across the system would then be eliminated, so patients would no longer have access to that benefit that they like and are using to afford their medications. And it’s just a little bit scary to make that change so quickly without talking to people. So we had a letter. The Autoimmune Association has a coalition, the National Coalition of Autoimmune Patient Groups, and we had that coalition run this letter open to all patient group, all 501(c)(3) patient groups, and we got 31 other patient groups to say that they also would like HHS to take another look at this letter. We then also worked with members of Congress, because they were going to have a hearing with Secretary Becerra. And we asked them if they would ask Secretary Becerra to review this policy and make sure that those unintended consequences were not going to harm patient access to their drugs. So we had representative Robin Kelly ask during a hearing if he could follow up with her on this policy. And he said yes. So we have now on record that he has to get back to her office. And since that has occurred, and we have other support from other members of Congress as well. HHS has pulled back on this policy for this year, so we’re really excited that they’re going to be taking another look at it, working with manufacturers to kind of see the bigger scope of the rebate system in itself, and how they can work to get more affordable drugs for patients as they intend, which we are supportive of, obviously. We want patients, especially who are Medicaid dependent to have better, cheaper access to drugs, we’re always for that, but this is just like, a huge win and a huge group effort.

Steven Newmark  07:14

Right?

Steven Newmark  08:47

Yeah, no, absolutely. First of all, I should mention that the Global Healthy Living Foundation was active in that as well. And of course, we’re happy about the outcome, but it’s an interesting example, because it’s not from the legislative side, it’s on the executive side, going to the Department of Health and Human Services, which is interesting and can be even more arcane when trying to advocate.

Amanda Krzepicki  09:06

Yeah.

Steven Newmark  09:06

But we won’t get into that. That’s a little more difficult. But it is interesting that even when it’s not just the legislative side that we advocate, probably in all three branches, actually. So that’s an interesting example.

Amanda Krzepicki  09:15

Yeah, judicial advocacy is becoming a huge priority with all these different course cases that are buzzing around. It is complicated. As a patient organization, have to work with lawyers, because if you’re not a lawyer, writing amicus brief is a little bit a couple steps above, so you gotta get some support there. But yeah, it’s important to gage all three branches for sure.

Steven Newmark  09:33

Right, for sure. Do you have any funny stories about any interactions with staff members or anything of that nature?

Amanda Krzepicki  09:38

You know, it’s so funny from my grad school program, it was located in DC. I have a lot of friends that actually work on the hill, so while they were so happily meet with me, I always joke when I was either bringing in former clients in or like going with myself, that they love to tell me no. So it’s always like you think your friends are going to be the ones that are really going to be the easiest to work with. But no, that’s really not the case.

Steven Newmark  10:00

Because they could tell you no, because they’re your friends,

Amanda Krzepicki  10:01

Yeah.

Amanda Krzepicki  10:02

I know totally I guess that’s true.

Amanda Krzepicki  10:04

And when I first got started in this space, this is probably more of a funny story about me, but I was so nervous. I was, like, fresh out of grad school, just getting out there, and I was very intimidated by Hill staff, so I used to get really, like, stress going into these meetings where I was going to talk to them about the policy issues I cared about. So I frankly would look them up on social media, because once you’ve seen someone in their Halloween costume, they become significantly less intimidating.

Steven Newmark  10:28

Totally.

Amanda Krzepicki  10:28

So is something I recommend, like, if you’re going to be trying to get your feet wet out there with staff, just to kind of you know, and that maybe if your staff make your social media private, because it was alot.

Steven Newmark  10:38

Oh geez.

Amanda Krzepicki  10:39

But just seeing someone in their Halloween costume makes things like, really down to earth. They are just people at the end of the day. We all go through the same experiences, so just having genuine conversations with them kind of always turns out the best in the end.

Steven Newmark  10:52

That’s true. That’s really good advice. If there’s any like, even just seeing on their social media feed, if there’s a certain hook, like, you know you’re in Washington, if they’re a Washington Nationals fan or something, something you could bring up while you get inside.

Amanda Krzepicki  11:01

Yeah? If they’re from the district, and you’re from the district, and you have those ties, and you can talk about, maybe you both went to the same high school, or maybe you both, like, the same coffee shop, it’s always like, great to have that personal interaction. Yeah,

Steven Newmark  11:12

No, totally. That is really good advice. So what are some of the top issues that you’re working on Capitol Hill these days? Summer of 2024, what are we up to?

Amanda Krzepicki  11:20

We’re in the kind of final sprint for elections.

Steven Newmark  11:22

Yes.

Steven Newmark  11:22

Right.

Amanda Krzepicki  11:22

Right before we get into lame duck session. So one of our top priorities as an organization, and I think many patient groups feel the same way, is the Safe Step Act. So that policy makes it easier to get exemptions from step therapy policies, which is utilization management and hinders patients from getting their preferred form of treatment. So one of the main sponsors of that bill, Representative Wenstrup, is retiring this year. We are so close to 218 co sponsors in the house, which, as I mentioned before, you really want to get the majority of members on that bill. So we are constantly reaching out to different offices trying to get members in, because we really want to pass that before he retires. So that’s a huge thing. Also the help copay bill, which works with copay accumulators and maximizers, which is where, in theory, you should be getting rebates from pharmaceutical manufacturers and co pay assistance. And instead, the PBM companies will then take that money and not use it towards your out of pocket costs, which is unfortunate. But there was recently a policy change within the Department of Labor. So here the two branches of government kind of working in tandem, where they released, like a FAQ that you in theory would bring the cost of this bill. So this bill was, I think, originally scored at something like ten million it was not going to be easy to pass, costing the federal government so much money.

Amanda Krzepicki  12:36

And they, I think, have brought that cost estimate down to zero by fixing something essential health benefits like loophole with that FAQ. So we’re kind of looking to Congress now to kind of assess their FAQ and pull that into the cost there, and hopefully get that passed now that it costs significantly less money. A new bill that just came out that we’re really excited about is called the 340B Access Act, so that helps create more transparency within the 340B system. I used to work for a federally qualified health center, so 340B is really close to my heart. I know those patients benefited from that program so much, and it’s really unfortunate to kind of see hospitals taking the drugs that they’re buying for pennies on the dollar and then up charging low income patients for them. We want to see those cost savings passed on. So this bill really increases transparency and ideally access for patients. So we’re really excited about that. It’s very new, so obviously it’s not going to pass this year. I can expect that we’re going to take this on for many years to come. So excited to get other groups involved on that bill and work together to make that a priority for years to come.

Steven Newmark  13:39

Yeah, those are some great examples. Those are all bills that we’re active with, too, in some of these coalitions that you were describing. And they’re all at different phases, if you will, in terms of where they are in terms of passage, The Safe Step Act, correct me if I’m wrong, this is the third Congress or the fourth congress that’s been introduced. So the point being, it takes many, many years. I think it’s the sixth year. So I think 2018 was when it was first, if I have that right, give or take, to get it over the line, and it may not make it. We’re going to push very hard, as you said, with Congressman Wenstrup retiring, hopefully this is the year, but it takes many years, and we’ve slowly but surely been building towards that 218 majority in the House. And if we can get to that tipping point, that would be fantastic. Well, let me just ask, just to tie it all together. Final question, how important is it for all of these patient groups and patients with different backgrounds to work together to achieve these outcomes?

Amanda Krzepicki  14:28

I think it’s critical. I was just at a coalition meeting this morning, and I run a coalition of 65 autoimmune patient groups. I think it creates like an echo chamber for all of our voices. I think going to the Hill with coalitions is really impactful, because then you’re meeting with all these members, and you’re showing that whatever issue you’re advocating for has a wide breadth of patient groups behind it, that people support it, and members want to hear that there are patients in their district that care about the issue that you’re pushing for. So bringing those people in is a lot easier with coalition work, having numerous groups behind it. So that way, if there are any opponents of the bill, they can be like, you know, this one opponent, but there are 65 groups that support it. It makes their jobs easier to help us, help them. So I think it is critical to work together, and that’s why, you know, we’re on this podcast today, kind of working together. So, yeah, I just think all the the patient community is so strong, especially like those of us in DC, we see each other all the time, so we’re constantly bouncing ideas off of each other and thinking of new, creative ways to get these bills passed.

Steven Newmark  15:27

Yeah, no, I totally agree. We achieve more together as patients than we do separately, and that’s why it’s so important for us to all gather and inform elected officials and others policymakers as a team, if you will. So this has been great. Thank you again, so much for your time, and thank you for all that you do on behalf of autoimmune patients. This has been wonderful.

Amanda Krzepicki  15:46

Thanks so much for taking the time to sit down today. I really look forward to hearing this go live, and look forward to continue to working together.

Steven Newmark  15:53

Absolutely. Thank you, Amanda.

Zoe Rothblatt  15:57

Steven, that was a great interview. It was so great hearing from Amanda about the work that she does, and just reminds me of the importance of groups like us working together.

Steven Newmark  16:06

Yeah, absolutely, it’s always good to chat with other patient groups and hear what other groups are up to. Well, we hope that you learned something from today’s conversation, too. And before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  16:19

Well everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense at all. If you liked this episode, give us a rating, write a review on Apple podcast, and definitely hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  16:34

I’m Steven Newmark. We’ll see you next time.

Narrator  16:40

Be inspired, supported and empowered. This is the Global Healthy Living Foundation, Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Zoe Rothblatt  00:08

Welcome to “the Health Advocates,” a podcast that breaks down major health news of the week, to help you make sense of it all. I’m Zoe Rothblatt, Director of Community Outreach at GHLF, and we have a special episode for you today, and I’m passing the mic to my colleague Erik Stone, who’ll be hosting this episode. Hey, Erik.

Erik Stone  00:25

Thanks, Zoe! Welcome to the first episode of our Advocacy Training Series, where we explore how you can get started on your own journey with patient advocacy and learn from the stories of other experienced patient advocates. My name is Erik Stone, and I am the Global Healthy Living Foundation’s Associate Director of Learning Experience Design. I’m so excited to be co-hosting this webinar today with Kendall Griffey from the Obesity Action Coalition.

Kendall  00:45

Hi! Thank you for the introduction, Erik. I’m Kendall, Communications Manager with the Obesity Action Coalition (OAC). OAC is a national non profit organization dedicated to improving the lives of individuals, affected by the disease of obesity through education, advocacy, and support.

Erik Stone  01:02

Thanks, Kendall. Today we are joined by Jody, Alicia, Yolanda and Judy, four patient advocates from around the country, who will be sharing their stories with us today. Maybe we could start out by learning a little bit more about them. Could you please introduce yourself: where you’re from, and share a few sentences about how you got into advocacy work.

Judy  01:18

My name is Judy Nagy, and I live in Sandusky, Ohio, which is on the shores of Lake Erie, halfway between Cleveland and Toledo. And I was diagnosed with rheumatoid arthritis at the age of 25 and that was about 44 years ago. So, I started my advocacy work, about 14 years ago, with the Global Healthy Living Foundation, and I’m also a platinum ambassador with the Arthritis Foundation. I have been to Washington and to Columbus, Ohio, participating in support for legislation to help all people with chronic illnesses and many medical needs. So, I love it, and I wouldn’t trade it for the world. I’ve met a lot of nice people, and it’s really wonderful.

Erik Stone  02:12

Thanks, Judy! Jody, do you want to go next?

Jody  02:14

My name is Jody Quinn. I live in Plymouth, Massachusetts – Lifelong Massachusetts residents, originally from Cambridge. I have psoriatic disease, psoriasis, and psoriatic arthritis. Diagnosed about 20 years ago, after 15 years of misdiagnosis. About eight or ten years ago, as my disease progressed, I started looking for a community – I didn’t know anybody else who had psoriatic arthritis. So, I, you know, through online searches, found the National Psoriasis Foundation and got involved with them as a volunteer for events and fundraisers. And then one day, they said to me, “how would you like to go to Capitol Hill and speak to all the legislators and then go to the FDA for hearings?” And I said, “You are crazy. I can’t do any of that.” So, I went, and I never stopped. I’ve just been going since then, and so I’ve been advocating with them for about eight years, along with AI arthritis, and patients rising, and other organizations. Because if one is good, ten is better, and I absolutely love it.

Erik Stone  03:13

Alicia, do you want to go next?

Alicia  03:14

My name is Alicia Smith, and I’m from Lakewood, Ohio. I’m a suburb just west of Cleveland. I am a nurse, and I became a patient advocate, almost by accident. I started on a health journey as a patient with obesity, and I started researching on social media for a community, just for support and education, and came across the Obesity Action Coalition, and really resonated with me what they were doing and how they were trying to get things moving forward with health advocacy, and I just happened to reach out by email to share my story with them, not necessarily meaning to be an advocate, but they reached out to me with an advocacy opportunity, and I realized that it was a really great opportunity, and decided to take a chance, and it’s kind of snowballed from there with different chances and opportunities, and I realized it was something that I really loved and wanted to do and really grateful for.

Yolanda  04:10

I’m Yolanda, I’m from the Pacific Northwest. I was a fledgling supporter of issues, such as weight bias, campaigns, and issues concerning healthcare access to people who are experiencing the disease of chronic obesity. I jumped into the arena, because I myself experienced the disease of chronic obesity. I was afraid to jump in, because I listened to the false narrative of what I was and was not capable of achieving, and I let that keep me back, but then I did finally emerge as a patient advocate with a story to share and my voice amplified. And the reason I was able to do that, because I was able to get involved with an organization called Obesity Action Coalition. And they were the ones to help me learn how to use my voice and to share my story, in order to assist people who are experiencing the same thing that I was, the disease of chronic obesity. And with sharing my story and using my voice, I hope to change the outcome for people who are experiencing that, and advocate for them and for myself, at the same time by doing that.

Erik Stone  05:22

Thank you, Yolanda! I will pass it over to Kendall to introduce our first discussion topic today.

Kendall  05:29

Thank you, Erik. So, let’s dive right into getting started with advocacy. What first steps should someone interested in doing patient advocacy work, take to get started? Let’s start with Judy.

Judy  05:40

I believe that you reach a point in your journey with your disease, where you feel comfortable sharing stories about yourself, and meeting fellow people that are dealing with the same issue you are. When you have already been through all the tests and the medicines and those surgeries, you really have an understanding, that a lot of people don’t know about. The first step is to find an organization, that is connected to the issue that you’re dealing with, and nearly all of them are involved in the legislation issues. I have worked with two organizations, and both times, when I went to Washington and when I went to Columbus, Ohio, we were joined by 59 other organizations, who were all in support of the same issue that we were. So, it takes a village to get things done, and when we work together, we can make life easier and a little bit better. I mean, we can’t take away the pain and we can’t take away the mental stress of living with a chronic illness, but working together, we can make great things happen.

Kendall  06:57

Thank you, Judy! Now, let’s pass it to Jody.

Jody  07:00

I agree with Judy. Finding a nonprofit or a patient group – they’re out there for whether it be arthritis or obesity or Crohn’s or diabetes, MS, pretty much any medical condition. They have a nonprofit or a group, and they all have advocacy groups within them that will provide training and access. Another option is even if you ask at your doctor’s office and you say, “gee, I’d like to get involved.” But sometimes they have good suggestions. And one day, just when I was up at the State House, in Boston, waiting to speak to the member, I was talking to the staff there, and I said, “what do other people do?” And they came out with some great suggestions of things for me to do, that I never would have thought of, and even have heard of, with these other groups. So, that’s another option. Or hospitals have advocacy groups too, that you can join. There’s a lot of avenues out there for people, whether they want to jump in full time or maybe just write an article here and there. So, there’s a lot out there, that people can try.

Kendall  07:54

Thanks, Jody! Those are some great tips. Alicia, what are your thoughts?

Alicia  07:57

I have a couple suggestions: I would say the first step is just having a passion for it. I think a big part of it is just being very, just, genuine and passionate about the topic. I think people will really see and connect to that, and then using that passion. And I think social media can really be a good tool to kind of find your community and find organizations, that may be out there, that inspire you and that you connect with, that you kind of share in their mission that you’d like to join. And then you can look on their website, and usually, that organization has a advocacy page. Advocates are really needed, so usually they have an advocacy page on there with contact information, and if they don’t, you can use like, their contact form or an email on a contact page and just email. At the time, I didn’t know what an advocacy page was, so I just use an email – so really, any way, and someone will most likely get connected to you.

Kendall  08:56

Thank you, Alicia. Now, I’ll pass it to Yolanda.

Yolanda  08:59

I agree with Alicia, having a passion, and I’m a purpose driven, behind your advocacy is very important, at least it was for me, and is for me, because it carries me through when things get difficult or when the process seems daunting. So, yes, having that purpose driven by my advocacy work. Volunteering in the area where my interest lies, that’s very important. Seeking out other people, who are in that area, surrounding myself in that space, that’s important. Just seeking out those people in that area, that’s important. Researching information about what I’m interested in, that’s important too. Yeah, just finding all the information that I can about what subject that I’m interested in advocating for. Self education, like they said, go to websites. And there’s so much information out there that you can find for yourself. So, that’s what I would suggest doing.

Kendall  09:54

Yeah, thank you. Those are some really amazing tips that each of you shared. Now, how did you overcome the fear of not knowing enough, to do advocacy work. Judy, we’ll start with you.

Judy  10:04

I don’t think I ever really had any fear. Working with the Global Health Living Foundation was very easy; they provided all the materials that we needed, to prepare ourselves, for being a patient advocate, and when I joined the 50 State Network, they reached out to me and we connected in Columbus, Ohio, the first time. They actually had another person there, that was helping us to put our story together, so that we could make a presentation to the legislators. I testified before the State Senate, in Ohio, for biosimilars when I first started. They gave me the courage, because they were so supportive, and that’s why it’s important to be part of an organization, that provides you the materials you need, and the camaraderie is amazing, especially with the Global Healthy Living Foundation. They have it all together. These people are really good at what they do, and they help you prepare. They have staff that reach out to you, when you have any fear. But really, I believe you need encouragement from your fellow patients as well, and your family and friends, because we’re not alone, and I’ve come across so many people that they’re afraid to make a change, they’re afraid to take the next step, and I encourage them, and I give them suggestions, and I’ve had a lot of people that were just so appreciative. It’s just taking that first step, reaching out, talking to other people, and knowing that your courage is going to make life better for you and for everybody. Because my motto is, ‘we’re all in this together, and together, we are stronger.’

Kendall  11:59

Wow, Judy! That’s incredible, thank you for sharing. It was very beautifully said! Now, I’ll pass it to Jody. How did you overcome the fear of not knowing enough to do advocacy work?

Jody  12:09

I was definitely afraid. For me, I was actually brought in kicking and screaming, dragged in to my first advocacy event saying “there’s no way, I can’t do this. I can’t talk to these senators, and I don’t want to go.” And they’re like, “you’re going.” So, I went. It was great, you know, all this fear – Got to meet with my senator, and I think she could see I was scared, and she just put her hand on my arm and said, “you’ll be fine.” And I just told my story, you know, I realized it isn’t how much you know, it’s you, it’s your story, that’s what you have to tell! Your story is the most important thing in advocacy. And even if 20 people have the same thing as you in the room, there’s still 20 different stories to be told. So, the encouragement I received that first day, and then every meeting I go to since then, you know, before you go, everybody is like, “you got this!” to each other. You know, there’s a lot of support along the way. So, after that first meeting, I’m not going to say each time you get a little anxious, you know, before you go in, but the fear just sort of melted away. When I saw, you know, it’s not us against Goliath; it’s us for ourselves, and everything we say is important. Your story is never right around you. So, that’s how I overcame my fear.

Kendall  13:16

That’s amazing, thank you for sharing! Alicia, I’ll pass it to you.

Alicia  13:20

I definitely, initially, had a bit of a fear as well, and then I quickly realized when people were telling me that, really it’s the advocates that are making the impact in the meetings. It’s the personalization, it’s not really the facts and figures, so much. When you’re trying to make a difference, but it’s that personalization, that’s really connecting to people: when someone can really relate, and put those facts and figures, seeing how it works into an everyday life, really makes a difference, and seeing how it plays out in the every modern day situation, and how it’s affecting people’s lives, really started to make me feel comfortable and know that when I’m speaking, I’m probably actually really being heard. It’s not just someone twiddling their thumb at a PowerPoint presentation. So, that really helped make me feel comfortable, and made me feel like I was actually making a difference.

Kendall  14:12

Definitely, thank you! Yolanda, what about you?

Yolanda  14:15

I came from a place, when I first started, of imposter syndrome. I believed that my story didn’t matter, how could I make a difference, to being surrounded by advocates? My experience with advocates is that they’re the best hype people ever. They lifted me up, they supported me, they helped me, like I said, find my voice and help me, instill in me, that I mattered, my story mattered, my story could help change, and change in make a difference. So, yeah, it’s who you surround yourself with, and you’ll find your inner story is important and that you can, too, make a difference. So, that’s how I dealt with my imposter syndrome and my feelings that I didn’t matter or my story didn’t matter. So, it was a rough start, but I increased my belief in myself and things I’m doing now, or being on this panel wouldn’t be possible, if without starting my advocacy work. So, it’s a good path start and just take the baby steps. The possibilities are endless – You don’t know where you’re gonna end up, but it will be a good start and a good place, I promise.

Erik Stone  15:17

Thank you so much, everyone, for sharing your answers to that. Throughout all of the stories you’ve shared so far, I’ve noticed the common theme of community. I’m curious, if you had to describe the patient advocacy community in one word, what would it be? And let’s start with Jody.

Jody  15:32

‘Supportive.’ I think there’s a million words to describe them, but that’s what I get out of the community. I get support in every possible way that I could even eat.

Erik Stone  15:40

That’s wonderful. Yolanda, what about you?

Yolanda  15:42

I would say ‘lightworkers,’ that’s my word.

Erik Stone  15:45

I love that. Judy…

Judy  15:46

I would say, the best part about it is the ‘fellowship’ and being comfortable talking to somebody, that has experienced another chronic illness, no matter what kind of chronic illness it is, because I haven’t come across anybody that isn’t dealing with something and fellowship, makes a big difference in that. The support, the camaraderie, the sharing of stories, and it’s just so rewarding to know that you can help each other through a lot of problems, in your journey, because most of these problems that we’re living with are lifelong. You make so many good friends when you’re a patient advocate. It’s fulfilling, it’s heartwarming, and yeah, at Global Healthy Living Foundation, we call it ‘the beacons of health.’ That’s what we have.

Erik Stone  16:36

That’s fantastic! What a beautiful answer, Judy, thank you. Alicia, what about you?

Alicia  16:41

I would say, I describe it as ‘hopeful.’ Just, it’s positive, hopeful, and just how they’re working for change, just gives me a lot of hope. So, ‘hopeful,’ would be my word.

Erik Stone  16:51

These are all great words. I’m feeling very warm and fuzzy, just hearing all these words like friendship and lightworkers passed around here. I think these are all, such great words to describe the advocacy community. I’m curious, if maybe we could elaborate a little bit more on how important things like fellowship and mentorship and friendship are to being a patient advocate, especially in those first few steps of getting started. Yolanda, do you want to start us off?

Yolanda  17:15

For me, mentorship is very important. Mentors offer insight into things that I’m going through, that I need help with. And their experience is invaluable, because this is still new to me, still, and they can, like I said, offer their insight and help me through the tough situations and make the road a little less bumpy for me. And not walking the road alone is comforting, and it makes it not so lonely, and there’s power in community. Just as you saying, “there’s power in that,” I get strength in that, and it’s very important. So, I’m grateful for that. I have a little community of my advocacy, and at the OAC, there’s people that I can call and connect with, if I have questions. And I’m grateful for that. I had questions; I was offered to sit on two local boards, a Medicare and a Medicaid board. I wasn’t sure if I was able to do that. A little bit of imposter syndrome was coming in, but this was an opportunity for me to do advocacy work, at the local level, and make change for people, who are experiencing the chronic disease of obesity, and I just needed that little wisdom from a mentor, whether or not if I’m ready for this, and I was able to speak with Crystal from OAC, and she says “Every bit helps, and everyone needs a place at the table.” So, that was the little push that I needed, and I accepted the positions, and I’m glad I did. I feel like I’m making a real change. And yeah, mentorship is important, and I’m glad I have mentors, and one day, I hope to be that to someone else, so you pass it along, and it’s a chain, it’s giving, it’s natural order, I think. In this community, that’s what it’s supposed to be. So, mentorship is very important, and I hope to do it for someone else one day.

Erik Stone  18:57

Thank you for sharing, Yolanda! Judy, why don’t you go next?

Judy  19:00

So, I considered myself very fortunate, because I had a lot of mentors from the very beginning. They led me on the path to being confident, that I was going to be able to live with this disease. You have to trust your doctor. If you don’t trust your doctor, then you’re going to have a lot of trouble dealing with your illness. So, the nursing staff, everybody involved with your journey, makes a big difference, and you have to be self confident that you can do everything that they ask you to do, and be able to speak up, if you’re not comfortable with what it’s doing for you, because they’re trained to help us, and that’s your first line of defense. From there, that mentorship helped me immensely, and I went full speed at that. And I did the research, I’m signing up before my patient portals at all of my healthcare facilities, and I read all my reports before I even see the doctor for a follow up. So, you have to be prepared. That is a relationship that, that is probably even greater than a marriage. It’s, hopefully, it’s a good marriage when you’re with a good doctor.

Erik Stone  20:19

Jody, I’ll pass it to you next. How important is mentorship to your experiences with patient advocacy?

Jody  20:25

Mentorship is what kept me in advocacy. Like I said that first time I went, I was a little scared, but after that, a lot of the agencies that you work with, they do provide you training before you go into any type of a session, but it’s what happens after – you strike up this friendship, and I’m the new person, and your eyes are aglow because you’re like, “Oh, look at this person. They’re talking with such ease, and they understand,” you know, and everybody’s listening to them, and they’ve been doing it for maybe 10 years, 15 years. So, after the meeting, I would strike up friendships with these people and do it, just a wealth of information. They tell you, “You can do it!” You need their assistance, they’re the people you can call. We have this issue in Massachusetts, and I just can’t figure out how to write this letter. Well, they’ll help. They’ll read the letter for you and say, maybe you should word it this way or that way. And it’s almost like a professor or student relationship. I think it’s vital. You can never learn enough, so, no matter how many people, and even now I’m doing it, probably eight years solid of advocacy, now, I’m at the point, where if I go to a meeting, they’ll send a new person in with me. But there’s nothing greater than when I post something online, one of these people that I thought were my mentors will say, “Great job, Jody!” And I’m like, it’s like a pat on the back from the professor, you know. So, I think it’s very important to have a mentor, and it doesn’t even have to be somebody within your own part of the arthritis, psoriasis society. But when you go to this advocacy events, you’re not just with that group. You’re meeting advocates from around country, around the world, all different groups, and you learn from all of them. So, mentorship is vital to any successful advocacy program.

Erik Stone  21:58

Thanks, Jody, those are really powerful words. Alicia, I’ll turn it to you now.

Alicia  22:02

Sure, thank you. I do believe that mentorship is very important, just kind of bouncing ideas off of each other and kind of a guide, just because you know when you’re new to it, you’re not really sure, really what you’re doing. So, I’ve had several and been inspired by people, kind of learning what it’s all about, and even just someone, to be honest with you, and even if maybe you’re doing something a little wrong, or maybe not necessarily wrong, but something that could be better than just kind of showing you the ropes there too, because you’re in it to grow also. So, you know, I’m fully open to learning a new way of doing something, I’ve learned better ways of doing things too: learning better word choices for things, maybe even seeing some of my own biases and things, and learning and growing too. So, that’s been really nice, and someone who has been living that topic, in that area, for a lot longer, with more experience is the perfect person to kind of show someone the ropes, and I think the mentor is a perfect person for that. So, I’m really grateful, and I think it’s a really important part of advocacy.

Erik Stone  23:08

Wonderful! I will pass it to Kendall, for our next topic.

Kendall  23:12

Thanks, Erik. Yeah, we’ve talked a lot about that warm, fuzzy feeling, that Erik mentioned, that you get with advocacy. It’s fulfilling, it’s inspiring, but sometimes it can be a little bit challenging. So, I’m curious, how did you overcome the frustration of how slow advocacy work can be sometimes? Let’s start with Yolanda.

Yolanda  23:34

I haven’t actually overcome that yet. That’s something I work on every day, and try to enrich and improve my processes around that, but I found that again, that community, advocacy community, is the foundation of everything, and being able to refer back to people who have been doing this and how I’ve done it, and know the process, and that is so valuable and important. So, I refer back to my advocacy community, they helped me get through those times, when I think, “what is the point? Or am I really making any progress? Am I really helping?” So, sticking with that community, referring back to that, is important for me to continue this work.

Kendall  24:11

Thanks, Yolanda. That was very beautifully put. And I love the idea of reframing, rather than overcoming, you know, as a means to an end. So, let’s pass it to Alicia. Alicia, how do you overcome any frustrations that might come with advocacy work?

Alicia  24:27

I just try to focus on the positive and just look at the silver lining, and just remind myself of what went well and not get frustrated with what didn’t. And just make adjustments and shifts and just keep going. But yeah, I’m just, definitely, stay motivated, positive, and know that good things take time and patience.

Kendall  24:52

Thank you for that. Jody, what about you?

Jody  24:54

When I first started advocacy, maybe the first year or so, I was naive enough to think I was going to go in, ask for something, they’re going to say yes, and that was it, and the bill was going to be paid, and we’re done. And it started to get frustrated. And then in the Commonwealth of Massachusetts, they have this program called Citizens Legislative Seminar. And my senator, said to me, “I think you should go to this.” You have to be referred by a state senator. It’s a two day program at the State House, run by all the senators, and they explain to you what the Senate’s about, how bills are passed, and all this stuff. So, one of them was a real hearing, and we had one bill that they were working on. It had 160 amendments. And I remember to this day, I’m like, “How can you do anything else?” They’re like, “We can’t. It’s going to take us three days, just to get through this one bill.” So, from that day forward, I always had that in the back of my mind, that everything takes a long time, because it’s a process – It’s not just a one step job. And now I consider every single step along the way important. Maybe I’ll go in for a hearing, one day a meeting, and they won’t pass it, but they heard my story. The next time I go in, they remember who I am, they remember my story. So, I consider every single step along the way important. And then, of course, the end result is the best. But it may take a two years. May take one of the things, Massachusetts, six years. But along the way, we informed a lot of people, educated a lot of people, so I don’t really get upset about the length of time. As long as people are listening to us and hearing our stories, I think it’s important!

Kendall  26:17

Absolutely, thank you so much, Jody. What about you, Judy?

Judy  26:20

Once you become enveloped in the advocacy world, I do believe that you learn patience as you go. There are times when you feel frustrated and you just have to move on to the next challenge. It’s really up to the patient themselves to make a change, if you’re dealing one on one with patients. Legislations, as we all know, that takes forever, and I can tell you that when I went with the Global Healthy Living Foundation, to support the bill for biosimilars in Ohio, that was about 12 years ago, and to this day, biosimilars are still not available, in Ohio. What they had told us was, “The bill passed and it was signed by the governor,” but then months later, we heard that it was held up because the State Medical Board had to put everything together, the parameters for coding and billing and pricing. And we thought, “Okay, that’ll take a while.” So, months go by, and the next reason they had was that, “Now we have drug companies that are challenging each other over who’s going to have distribution rights in the state,” and I wanted to be one of the first to get the biosimilars, when they were available. They’re still not available. So, years and years and years can go by before something good happens. And like grandma always said, “Patience is a virtue,” yeah, and sometimes you just have to wait it out. But the rewards are so awesome!

Kendall  28:03

Absolutely! Thank you so much, Judy.

Erik Stone  28:05

To wrap up our episode today, I’d love to know to those who are listening right now, who are considering starting their own patient advocacy journeys. What’s one piece of advice that you would give them? And let’s start with Judy.

Judy  28:17

Find the organization, that is connected to your chronic illness, participate in their advocacy programs that they have available, reach out to other people, who may already be involved with organizations, and once you make that first step, you will never go back. It’s so rewarding!

Erik Stone  28:38

Perfect! Yolanda, what about you?

Yolanda  28:41

I would give the advice: you don’t need to rewrite the whole playbook. There’s people out there who’ve been doing this, who know how it works, in the best ways to approach it, not that what you’re bringing to the table is not important, because your innovations are important as well. You could bring a new spark to the whole cause, but you just don’t have to start from scratch. There are things that are being done, that have been done previously, so you don’t feel that overwhelming need to figure everything out, because there’s things in place already. So, that gives you time to focus on how you can best use your gifts and talents, to further the cause that you’re interested in advocating for.

Erik Stone  29:16

Very inspiring, Yolanda, thank you! Alicia, what about you?

Alicia  29:19

My advice would be that, if this sounds just even remotely interesting to you, I would just try it. Advocacy is really needed. It’s a really powerful tool to bring change, and I think you would most likely surprise yourself and be really happy that you did try it. I know, I was really surprised by how much confidence it gave me and how much joy it brought to my life. So, I really would encourage you to give it a try.

Jody  29:46

Just the fact that you, may be thinking about advocacy, means you already have that little spark inside of you. But don’t be afraid to start small; you don’t have to start out your first year of being on two boards and going to cabinet for four times a year, and being on steering committees. You can start out with simply joining an advocacy group and signing on to send letters to your legislators, or going to a local event that there might be, and just speaking to other patients. You can start small, and patient groups are definitely the easiest gateway to it. But as Yolanda said, you get so much out of it, that you never expected. You almost feel selfish. And you know, I was doing this for everybody else, but it just makes me feel so good inside, to do this. And I have never heard of anybody who started advocacy and said “I got nothing out of it. I’m never going back.” You always get something out of it. But don’t be afraid to start small. If that’s what’s holding you back, there’s something out there for everybody, so just give it a try. You won’t be dissapointed!

Erik Stone  30:42

That’s wonderful, Jody!

Erik Stone  30:45

Thank you all for joining us today. This has been such an inspiring discussion, and I want to thank you each individually, for sharing your stories with us today. I think we had some really great stuff.

Judy  30:56

It was nice meeting all of you. We’re all in this together and together, we are stronger.

Jody  31:02

Thank you, for this opportunity today to talk about advocacy, because I never want to stop talking about advocacy. And today’s a perfect example of the community I didn’t know these other three advocates before today and now is three more advocates, that we’re all friends. Thank you.

Alicia  31:16

Thank you, everybody. It’s really nice meeting all of you. And thank you Crystal again for inviting me to be a part of something again. I very much appreciate it. And thank you to Erik, Ben, and Kendall for helping out today. Appreciate that.

Erik Stone  31:31

And thank you to my co-host, Kendall Griffey from the Obesity Action Coalition, it’s been wonderful facilitating this discussion with you today.

Kendall  31:38

Yes, Erik, it absolutely has. And thank you to each of these advocates. It was incredible, hearing your stories and sharing your insights. So, appreciate it so much.

Erik Stone  31:48

We hope you enjoyed this special episode of “the Health Advocates,” a podcast that breaks down the major health news of the week, to help you make sense of it all. And before you go, click on the link in the description to join our 50 State Network, so you can make a difference and join our amazing team of advocates. If you liked this episode, give us a rating, write a review, and hit that subscribe button, wherever you listen. You can listen to all of our podcasts at ghlf.org/listen. Once again, I’m Erik Stone, and join us for our next episode of our Advocacy Training Series.

Narrator  32:17

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Zoe Rothblatt  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to “The Health Advocates,” a podcast that breaks down major health news of the week, to help you make sense of it all. I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

and I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the healthcare world, to help you make informed decisions to live your best life.

Zoe Rothblatt  00:27

And today, we’re joined by Kevin Stephens. I’m really excited for you all to hear from Kevin. He’s a weight loss surgery patient and an active member with the Obesity Action Coalition. He advocates for people living with obesity, and he struggled with his weight since childhood, and he’ll share today with us his journey and a lot about the importance of health insurance coverage and access to treatments.

Steven Newmark  00:50

Great. Well, I’m excited to have a listen.

Zoe Rothblatt  00:53

Hi Kevin. Welcome to “The Health Advocates!”

Kevin Stephens  00:55

Hi. Thanks for having me.

Zoe Rothblatt  00:57

Awesome. We’re so excited for you to be here. I got introduced to you through Obesity Action Coalition. But why don’t you start off by introducing yourself to our listeners.

Kevin Stephens  01:05

Hi everyone. My name is Kevin Stevens. I live and I work in Riverside County. I’m a weight loss patient and an advocate for the OAC. I manage a Human Services Office. I oversee the Medi-Cal and the CalFresh programs. CalFresh is also known as a snap in some states, it’s a food stamp program, and Medi-Cal is an insurance for low income and disabled individuals.

Zoe Rothblatt  01:28

Yeah, that’s awesome, that you do so much related to health and also have your own personal journey. So, maybe just diving into that a little bit more. How did you get involved with the OAC?

Kevin Stephens  01:38

Well, I got involved with the OAC; I go to a lot of weight loss conferences, like Obesity Health and things like that. And I discovered the OAC online, and I saw they were very like, policy driven, advocacy driven. In my tenure at Riverside County, I worked in policy for several, several years, and I used to go up to Sacramento, and we would review the bills and things like that, that was related to Medi-Cal and how it affected County. And I’ve always been curious on why we do the things we do. And I really, I saw the website of the OAC, and I really liked how it was presented, and they cover the treatment of obesity, rather than just, oh, this is a weight loss surgery conference, or this is for people who’ve had that gastric bypass and things like that. It was a different type of conference, and I, it was in Washington, D.C.. So, I took a little vacation. Whenever I go on these conferences, I turned them into like little mini vacations. And I went up to the conference for the OCA in Washington, D.C., and it was very enlightening. So, I trained and became an advocate as well, and that led me to have the great opportunity of going to Washington, D.C. again, to talk to the lawmakers about my story.

Zoe Rothblatt  02:44

I’m wondering what it was like. You know, you mentioned, you did policy in your work life, and then you also had this experience with policy. Like, what was that like? I guess, like tying in, like the personal and professional little bit and like, did you see differences in the work you do with Medi-Cal and snap versus the work you’re doing in D.C. with TROA.

Kevin Stephens  03:03

I started with Forsyth County about, it’ll be 26 years this year, and I’ve always been in Medi-Cal. I was a Medi-Cal eligibility they call it eligibility worker or technician, and we review customers cases, we approve them, and we try to get them put on Medi-Cal. So, I’ve always done Medi-Cal, and it overlaps, because sometimes you have to work with the customers. Sometimes certain customers, you have to kind of advocate for them when they’re having difficulties getting their benefits or what have you, and you have to teach them and things like that. But in the policy part of it, when I became, I was a program specialist for several years, and that job involved going up to Sacramento, once a month, for meetings, representing Riverside, and we talked about various bills, how it’s going to affect our county. So, that’s the part I was really interested in. So, when I became part of the OAC, and I was talking to some of the members, and I was telling them my background, they said you probably would really want to consider becoming an advocate, because, you know, we go not only to D.C., but we advocate locally, probably represent California and things like that.

Zoe Rothblatt  04:04

And you answering my question, I realized I, like, skipped such an important part of this. But like, what is your patient journey? When did it start? Like, how did you get to where you are today? We talked about, I guess, your advocacy journey, but what’s your patient journey been like?

Kevin Stephens  04:19

My patient journey – It started off early, I’ve always had a struggled with my weight. I’m always going to live with obesity, and I always struggled with my weight, and I started recognizing it at a very young age. I noticed every year in my school pictures, I was always getting a little bit heavier or a little bit chunkier or what have you. We don’t like to use the word that…I started noticing it. People would tell me every year, at the end of the school year, “Oh, Kevin,” oh, after the summer, you know, you lose a little you know, you’ll be a little smaller, you lose a little weight, things like that. And it really was brought to my attention when my mother took me to Weight Watchers when I was in the fourth grade. In the fourth grade, I went to Weight Watchers, and when I got there, one of my classmates was there, and we both, like, looked at each other, and we were both, like, mortified. So, I think I went back to one or two more sessions, and I never saw her there again. We never talked about it.

Zoe Rothblatt  05:06

It’s like the silent pact of, “we’re not talking about this.”

Kevin Stephens  05:10

Yes, that’s exactly what it was. I didn’t really get teased too much during school, elementary. I mean, it was some teasing here and there, and, you know, they call it bullying and stuff now. I never thought it was that extreme. I was able to physically do a lot of things for the longest time, and I didn’t really let the weight bother me until I got into my late 30s and late early 40s, I started developing a lot of health problems. I had sleep apnea; I was falling asleep in the middle of the day at work. Real close friend of mine, a co-worker, she would just, on the other side of the cubicle, she would go, “Kevin!” and I “What?” And she goes, “Oh, nothing.” I said, “Oh, okay, thanks.” And that was like our little signal, Kevin, you’re like, snoring. And I said, you know what’s going on, why am I falling asleep all the time? And then, um, I was just having, my blood pressure started going up, I was pre diabetic, and I was actually, technically, I look back at my numbers, I was diabetic for a short period of time. It just things like that. Then I was not able to do certain things that I wanted to do. I had to, for example, like for work, I would have to to go back and forth to Sacramento. I would have to fly, obviously. And after that, one day or two day trips, and I said, “Well, I don’t mind going. I would love to go, but you might have to buy another seat for me on the plane.” And my supervisor and my manager, they were awesome. They said “that’s no problem, it’s part of your job. We’ll do it.”

Zoe Rothblatt  06:22

Wow, that’s amazing. I imagine, like, that was like, a hard conversation to go into. So, to get that response, probably meant a lot.

Kevin Stephens  06:30

It meant a lot to me, and I’m close to these individuals to this day, and I think maybe a few opportunities slip by me, or I was bypassed because of my weight, a few. Because I’ve been very successful in my career, so I don’t really want to use that as a crutch or anything like that. I have no regrets, in regards to my career, and I guess I’ll fast forward to when I had my gastric bypass surgery. They basically go in and they reroute your intestines so you want to Sorb the food as fast and like the fat and all that stuff. And they also make your stomach almost the size of a little egg. Goes from being a little bit, not as big as a football, but down to a size of an egg. And obviously, you know, you’re gonna loose weight. And I did. My heaviest, I was at 417 pounds, and I got down to about, my lowest was about 198, so I lost about 220 pounds, roughly, or a little bit over that. That was in 2011 and my life really, really changed. I didn’t have to get the extra seat on the plane, my sleep apnea went away; I didn’t have to do the CPAP anymore, which I hardly ever use. Because if you’re familiar with the CPAP, that’s that machine they put on your face, and you have, like, this oxygen thing. It’s not really oxygen, it’s just air. You’re getting constant air throughout the night; It’s loud, it’s cumbersome. I hardly ever used it. But the biggest thing that changed, like, I had a situation before the surgery, where I was at a restaurant with a friend, and we were in some, it’s like a little fast food restaurant outside, and I broke the chair. I ended up falling on the ground, breaking the chair; that was very embarrassing. Yeah, so I had the surgery, and it was successful. Then later on, in about six, six years now, I had some skin removal surgery around my abdomen and my chest, because after when you lose weight that fast, I’m older, I had a lot of excess skin that was left over, so they took care of that for me. So, my life really changed. But the biggest part of it all is that when I joined OAC and started getting educated on a lot of things, I found out I was educated, and I learned that Obesity is a disease. Is a chronic disease. It can be treated, you just have to find the right treatment program, which I did. But the biggest thing that I took from it, it wasn’t my fault.

Zoe Rothblatt  08:27

Yes! Louder, for the people in the back, “Obesity is a disease, and it is not your fault.”

Kevin Stephens  08:33

It is not your fault, it’s not your fault. And it clicked, because all my life it was always, why can’t I lose this weight? Why can’t I keep it off? I try to various diets, like I said, started with Weight Watchers and all kind of thing, the Atkins, this and that, another. And Pritikin, you probably don’t even remember that, or…

Zoe Rothblatt  08:50

I have heard of it, yeah.

Kevin Stephens  08:52

Okay, I’m 55 years old, so some of the stuff you probably not don’t even know.

Zoe Rothblatt  08:56

I’m younger. But unfortunately, a lot of the toxic diet culture has just prevailed…

Kevin Stephens  09:02

Yeah.

Zoe Rothblatt  09:02

…and passed down, yeah.

Kevin Stephens  09:04

Yes. I almost tried what Oprah Winfrey tried, back early in her career. And I don’t remember when she had that episode where she came out and she was in this all black and the jeans, and she lost all this weight, and she carried out a thing of fat, and she basically, it’s a all you drink is shakes for like, six or seven weeks. And obviously, you know, when you’re not eating, you’re gonna lose weight.

Zoe Rothblatt  09:22

But, like, I can imagine how much of your life deteriorates by just drinking shakes. How can you participate in your every day?

Kevin Stephens  09:30

Yes, and she even admitted she goes, you know, the next day after I started eating again, she started, she gained like, 10 pounds almost instantly. But when I realized that obesity, because the American Medical Association says that, you know, it is a disease, and when it started to fall and it was like a big burden was lifted off me, I said, “wow,” you know, because growing up and what have you, and even up till 40, I, the doctors never did address my weight. They said “he would grow out of it, he’ll get taller, he’s gonna play sports.” Well, I didn’t get much taller, and I didn’t play sports. And it’s been a journey. You asked me about the journey – it’s been a big journey. It’s been a challenging, but it’s been exciting, and I’ve learned a lot through it.

Zoe Rothblatt  10:07

Yeah, I’m amazed by the way that you’re able to look back at your journey with such clarity, like even saying, you know, you were successful at work, but there was still challenges. And just like defining things and calling it for what it was, probably is a huge part of, like, the healing journey. And then I wanted to highlight something that you said, like, in addition to obesity being a disease, you listed so many comorbidities, like the sleep apnea, the diabetes, like, I think people underestimate, like, how many health complications come along with obesity, and it’s often dismissed, but it’s making you feel bad in everyday life.

Kevin Stephens  10:46

Yes, and I don’t think I mentioned the turning point in regards to my health. I was diagnosed, my legs kept on swelling real bad, as I got to my heaviest weight. And I was going to all these doctors, and they were all saying, “Oh, it’s because of your weight. You need to lose weight. You need to lose weight. It’s probably something with your veins, you’re carrying extra water. We’ll give you some water pills,” and all this stuff. Then finally, I found a great doctor, and he goes, “You know what, Kevin, you have what we call lymphedema.” I said, “What’s that exactly?” He said, well your lymph nodes and your legs are damaged, and once they’re damaged, they it’s permanent. It’s you can’t replace them. You can’t they won’t come back.” I said, “Wow.” So, the first thing is, in my mind, am I gonna lose my legs?

Zoe Rothblatt  11:21

No, that’s terrifying.

Kevin Stephens  11:24

Terrified thoughts, yes, I was gonna have to get my legs amputated. He said, “No, no, no, you’re not gonna lose your legs.” I said, “Well, did this? What did my weight cause this?” He said, “I’m not gonna say it did or didn’t, because I don’t know. No one will ever really know. I just know that you obviously have been to a third world country, so you didn’t catch any parasite or anything like that, and you don’t have you’re not a cancer patient, so you didn’t get it from chemo or anything like that, or from cancer treatment, obviously. So, your weight probably did contribute to it, but it’s not like you’re gonna lose your legs and you’re gonna be able to walk, but you can treat this and you can losing weight will probably not reverse it all the way,” because mine isn’t too bad. It’s really, people don’t even really notice until I, like, point out. It’s mainly, primarily, in my left leg. And he said, “losing weight will be, I do recommend you lose some weight, because it’ll help,” and that’s why I went forward with the gastric bypass, because, like I said, I tried everything and it just couldn’t. But yeah, like you said, it’s a lot of issues with your health because of obesity.

Zoe Rothblatt  12:16

And in thinking about, like, the decision to have the surgery and that turning point, and then also, you know, tying that into what we were talking about before with Troa and access and the importance of that. How, like, easy or difficult was it for you to access the needed treatments, like, once you decided, in that turning point that you were going to, you know, tackle this head on?

Kevin Stephens  12:37

Well, in 2004, I had my gallbladder removed. And the doctor, the surgeon, said, “You know what, while we’re in there, we can have you ever heard a gastric bypass?” And I said, “Yeah.” And he goes, “would you want to consider that? Because, you know you need to lose this weight.” And I said, “No.” I said, “I can’t do that.” And I talked to one of my close friends at work, and she goes, “why didn’t you do it back then?” I said, “No.” I said, “I’m not doing that.” I go, I can’t imagine my life without being able to eat a ribeye steak. That’s how, I want to say, stupid I was, but that’s the first thing that popped out of my mind was, “I won’t be able to eat I’m not gonna do this to myself.”

Zoe Rothblatt  13:11

I think it’s like important to go through all those thoughts before you make a decision, you know, like, what are the risks, benefits? How does it impact my daily living? Totally, I’m with you.

Kevin Stephens  13:22

And what I learned, I wasn’t ready to have it in 2004. So, fast forward to 2011, when I found out about the lymphedema, break the chair. Oh, it was a situation where I fell on the floor and I couldn’t get back up. My surgery, I was lucky, it was covered by my insurance. We’ll probably talk about, a little bit more about, that later. But yeah, I was covered by my insurance, so I didn’t have any issues getting surgery. I had to go through like, a three month class, and they teach you about nutrition. You have to have a psych, a behavioral therapist who will come and give and, basically, they give you five questions: they ask you, “oh, are you good spirits? Are you this? Are you that? Why are you losing the weight?” So, you’re not gonna say, “I’m losing weight because I’m gonna be in a wedding next week.” You know not to say that; a smart person knows not to say something like that. You say, “I want to lose weight because I want to be healthier and ….” So, you’re out there in five minutes, and I go, “What is this?” They could do have just done this probably over the phone. But anyways, I got approved for the weight loss surgery. So, fast forward to just last year, actually. And you know, all the GLP-1 drugs, all the new treatment programs they have for weight loss, and I’ve been to a lot of conferences, and we talk about regain because, you know, I told you, I lost 120 pounds, but throughout the last three years, and I don’t want to blame it on Covid, because I started gaining it right a little bit before Covid. I gained about 35-40 pounds. And I said, I’m having this regain, the weights not coming off as fast as it did back then, obviously. And I’m exercising. I’ve been watching what I eat, but I’m still having issues. So, then all this talk about these drugs came out. So, I went to my physician – one is prescribed when you have diabetes. So, I was basically, because of my weight gain, my A1C, that determines if you’re diabetic or not, was gradually increasing, but not, I wasn’t diabetic, they said pre diabetic. So, I said, “Well, I’m pre diabetic.” “Well, I only give it to my diabetic patients.” I said, “Well, what about the other one?” That’s the same thing, but it’s for weight loss. It’s branded for weight loss. He goes, “Well, you need to talk to your weight loss specialist about that.” And I said, “Okay,” it was very dismissive, and I was very, I don’t know, I just the minute I, the conversation turned to those drugs, it was like he started acting weird. And I really mean, it’s just like he was, wasn’t like the same doctor I’ve known all these years.

Zoe Rothblatt  15:20

Yeah, especially because he knows your history and like the struggle and how far you’ve come, and you know how much, like, regain, could impact your journey, physically, mentally, yeah, I’m so surprised. Like, yeah, you want an advocate alongside you!

Kevin Stephens  15:34

Correct. So, then he finds this something that really just, oh my goodness, I every time I tell this story, it just really has an impact on the people in the room, but we go through it a lot in the weight loss community, he told me, “Well, you already took the easy way out years ago.”

Zoe Rothblatt  15:49

Oh my gosh!

Kevin Stephens  15:49

You just need to stop eating as much and exercise a little bit more. I was so, like, devastated and disappointed in him. I didn’t even, like call him on it, which I should have, I know as an advocate, I should have called on it right then and there. But when it happens to you, people told me, Kevin, “when it happens to you, it’s easy to know what we’re gonna do, when we’re gonna do it, how we’re taught to do things, but when it happens to you, you never know how you’re gonna take it.”

Zoe Rothblatt  16:09

For sure, it’s shocking! Also, since when is a major surgery, easy? Like…

Kevin Stephens  16:14

Yes!

Zoe Rothblatt  16:15

What!?

Kevin Stephens  16:16

So, I said, “Okay.” So, I was so, like, angry, and man, I said, you know what it was like late September/October, and I said, “I’m just gonna do an open enrollment in November. I’m just gonna switch providers and get a new doctor to start all over again,” which I did. And then I got my new doctor, he’s great. He immediately prescribed it for me, the diabetic one. And then I found out the hurdles that I’ve been reading about and hearing about – It’s an insurance company. The insurance company denied it. I’m looking on my phone. My pharmacy is attached to my phone. I get the thing, oh, it’s been denied. I called it, “Oh, yeah, we deny it. You’re not diabetic, you’re pre diabetic, but you’re not diabetic. So, it’s been denied. And it’s in our, if you read our…” I forgot what they call it.

Zoe Rothblatt  16:54

“The explanation of benefits.” Maybe?

Kevin Stephens  16:57

Thank you! That’s what it is. I said, “Okay, well, I can’t really, probably do nothing about that. It says this in writing. I can’t do it, and I understand, you know, policy.” So, I said, “Okay.” So, I went back to the doctor, two weeks later, I said, “they denied it.” “They denied it?” I go, “Yeah, yeah,” “We’ll try the other one then.” Two days later, denied. And it’s for weight loss, “Yeah, we do cover it, but you have to take a nutrition class and …. for six months, and then we’ll…

Zoe Rothblatt  17:20

Wow!

Kevin Stephens  17:20

…reevaluate. I said, “Well, no, I’m still considered obese through the BMI,” which, that’s a whole another story.

Zoe Rothblatt  17:25

Yeah.

Kevin Stephens  17:25

You know, you lose all this weight, and they tell you you’re still obese, but um. And I said, “Okay, wow.” I changed insurance companies, and I’m still going through this, like, struggle, but I see the struggle is real. I always heard about it happening to others, but now it’s happening to me. And I would talk to co workers and other friends, and they said “I was able to get it,” like, I go, “Are you diabetic?, “No, I’m not diabetic. My doctor got it. My insurance company paid for it.” So, I realized that insurance has a lot to do with it.

Zoe Rothblatt  17:47

And were you able to get it in the end?

Kevin Stephens  17:49

No, I haven’t got it yet. I still, I’m in my, in August, I’ll be done with my six month program. I joined this online program, which they said I could join. It was sponsored through my insurance, and I, they put me on some type of eating plan. It’s a diet, but basically it’s similar to a Keto, almost diet. It’s low carb, high protein, and all the stuff that, I, they’re trying to teach me, I’ve been through all that before.

Zoe Rothblatt  18:11

Right. I’m thinking like, that’s so frustrating after your entire journey, you named all the diets you’ve tried, you’ve had the surgery, like, you clearly know what options work or don’t work, or what’s worth considering, and they’re making you step through…

Kevin Stephens  18:25

Yes

Zoe Rothblatt  18:25

…this program for six months, in order to try an option that you and your doctor both agreed would be beneficial for you.

Kevin Stephens  18:32

Yes, and I’m going to, like I said, in August, it will be the six months, and I might, I’m still considering, it’s just I haven’t had the time to really sit down, I have to draft it up. I might just go in and try to appeal the first denial, the denial I got a few months ago, and tell them all that I’ve been through all this. I had weight loss surgery, and then I’m suffering from regain, it’s proven that the weight loss drugs. And I just want to try it, I might not be able to stay on it. So, not everybody, like they talk about these drugs, but not everybody, they some people get severely ill, some people have a lot of, what you call it, side effects from it, but I want to have the option. That’s where I learned that the physicians, the doctors, they need to give patients options and let them decide if they want to go through that option or not, and then if that doesn’t work, try something else. But when you’re just blocked all together, it’s very difficult.

Zoe Rothblatt  19:16

Totally! All the time, I’m like, to the insurance company, let’s see, like, your medical degree, like, come on. You know, it’s like me and my doctor decided this, that’s what the specialist is saying. And you think you could come in here and just slap a denial after never, like, having met me or my doctor or gone to medical school.

Kevin Stephens  19:35

Yeah, but it’s a coverage. I, they send me a copy of it, and it says, we do cover it. However, you have to do this: your BMI has to be that, which is me, I’m fine. I meet all the criteria. You have to have some kind of illness, I have high blood pressure, still, I take medication for it, so it’s fine. So, I meet that criteria. But then all of a sudden, when you keep reading, oh, you have to join a nutrition program for six months and meet the criteria…. Because I haven’t done that yet, they wouldn’t prescribe it. But even after I do all this, it’s no guarantee they can come up with something else that I hear…

Zoe Rothblatt  20:04

Right, right.

Kevin Stephens  20:05

Ongoing – it’s like a circle forever, forever. And I guess some people are successful. They follow an appeal, and some people get it, some people don’t, and that’s where all this talk about bias comes into play. Because why are some people getting it? Some people aren’t getting it? So frustrating.

Zoe Rothblatt  20:18

Think it’s also so frustrating because, like, you’re an advocate in this space and you’re having trouble, and it just makes me think, like, so much about the people that, like, don’t even really understand what’s happening when they get these letters from their insurance, right? Like, it takes so much like, health literacy to just like, understand this.

Kevin Stephens  20:35

Yes, and that’s how I tied it to my job. People apply for, it’s Medi-Cal in California, which is Medicaid. It’s Medicaid, but it’s Medi-Cal in California. California always have to have a special name for everything, although there’s Medicaid, but we have to be Medi-Cal. But they apply for Medi-Cal, they get denied. And some people, they’ll file an appeal. “Why am I denied? Explain it to me.” Some people won’t do all that. They just like, “Oh, whatever.” And they just give up. And like you said, that’s how it is with this. Like some people, they just the insurance company won’t approve them. They’re not going to fight for. They don’t really know how to, they don’t even know where to start, and it’s sad that and they get away with not covering another person.

Zoe Rothblatt  21:08

So, what is your advice for other patients, like, either just for advocating for themselves in everyday life, or, I guess, larger scale advocacy like you do with OAC. How can people just like, I don’t know, feel like motivated to share their story like you do?

Kevin Stephens  21:22

You might want to start off by going to, if you’re a weight loss surgery patient, or you’re thinking about having the surgery, you might want to start off with, like, a local or online support group, and you start speaking there, like for me, for example, my advocacy really started, right after I had the surgery. It was like six months out when I lost a lot of weight at that time, at the very beginning, my physician that ran the support group, which also was the person who did our health maintenance classes, to prepare for the surgery, she called me, she asked me, she said, “How are you doing? It sounds like you’re doing real well.” This is another, “Would you mind coming and talk to the class?” So, I said, “Sure, I’ll come talk to the class.” You can bring bring a prop or something, like a old pair of pants or whatever. Just make it your own, make it personal. So, I brought my pants, because I used to wear a size 56 and then I was down to, like, a 34 or something at the time. And so I showed them, you know, the I could step in one of the pants legs. That’s how big I was. That makes you feel comfortable talking about your story. It makes you, I recommend that to start out small, like that. But if you really just want to jump into advocacy, go to the OAC website. They have a whole web page dedicated to advocacy and what you can do on the local level. It doesn’t mean you have to go out to Washington, D.C. and go up to Capitol Hill and talk to lawmakers. You don’t have to do all that. You can help with letters to your congressmen, things like that. And you can do things locally if you want to, for people to get involved with the advocacy.

Zoe Rothblatt  22:41

Yeah, I think it’s like, no active advocacy is too small. I love your suggestion. Just start off locally with what’s comfortable. On that note, Kevin, thank you so much for joining us today and sharing your story. I learned so much from you, and I really just want to reiterate the main point that you said that, “Obesity is a disease and it’s not your fault.” I think so many people need to hear that, and have heard opposite their whole lives, and I’m hoping a podcast like this can help reduce some of that stigma.

Kevin Stephens  23:10

I hope so too. Thanks for having me again.

Zoe Rothblatt  23:12

Yeah, and going off of that, it was a good reminder from Kevin that no act of advocacy is too small. I really appreciate that he encouraged people to just get involved locally and share their story however they can.

Steven Newmark  23:12

Well, Zoe, that was a really great discussion with Kevin. It was a reminder of how much work there is to do to reduce barriers and treatments, and advocate for a better insurance coverage, especially for the Medicaid population.

Steven Newmark  23:35

Yeah, and we hope that you learned something too. Before we go, we definitely want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  23:43

Well, everyone. Thanks for listening to “The Health Advocates,” a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating, write a review, and hit that subscribe button, wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  23:56

I’m Steven Newmark. We’ll see you next time.

Narrator  24:02

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:06

Welcome to “The Health Advocates,” a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.

Zoe Rothblatt  00:27

And Steven, it’s been a while since we’ve done a check in on the latest and greatest with viruses roaming our nation.

Steven Newmark  00:34

Yeah.

Zoe Rothblatt  00:34

So, we thought this would be a good time for a midsummer check in to see where we’re at.

Steven Newmark  00:39

Yeah, excellent. We’ll also discuss the latest vaccine news and how you can keep safe for the rest of the summer and into fall. So, let’s get into it.

Zoe Rothblatt  00:47

Yeah, so I guess just to level set, before we dive into the specifics, it’s always helpful to say that things are better now, in Summer 2024, then each of the previous summers, especially better than Summer 2020. So, I’m grateful for that.

Steven Newmark  01:01

Absolutely. So, I feel like that’s a caveat to the entire production here today. All the negativity we were about to put into the ether. It’s better than it was.

Steven Newmark  01:10

Let’s say you’re supposed to like sandwich like bad news or feedback with two bits of good news. So, that was that was me sandwiching. Well…

Steven Newmark  01:18

There you go!

Zoe Rothblatt  01:18

the bottom half of the sandwich. Yeah.

Steven Newmark  01:20

Yeah, let’s see it!

Zoe Rothblatt  01:21

So, COVID…

Steven Newmark  01:22

COVID. All right. Well, on the downer, COVID cases are once again rising across the country. Of course, they’re rising in relation to the low levels, that we’re becoming accustomed to. Positive tests, emergency department visits, hospitalization; the mean markers that the CDC uses to gauge virus activity are all rising, especially in seniors, and especially in Western states.

Zoe Rothblatt  01:42

This is a pattern though, that we’ve seen, traditionally, in the summer in the U.S. every year, especially around July 4th travel. So, it’s not too surprising. And like you mentioned, it’s like, while case rates are rising, it’s still a low level, because it’s in relation to the low level that we’ve been seeing. So, it’s not like at a scary point.

Steven Newmark  02:01

Yeah, I just want to note that Hawaii, in particular, is showing high levels of COVID-19. So, to our friends on the islands, we ask that you stay safe.

Zoe Rothblatt  02:08

Yeah. Shout out Hawaii, stay safe out there!

Steven Newmark  02:11

And there are some new sub variants. We’ve all become mini virology experts, at this point. We know that viruses mutate, and Omicron has continued to do so itself.

Zoe Rothblatt  02:20

Yeah, well, it’s like hard to keep track of all these names, I guess, like the biggest point to make about this sub variant is just that experts are closely monitoring it so that we can tailor the vaccine to be, like, most effective towards the newest variants.

Steven Newmark  02:34

Right! You mentioned July 4th travel, that the spread is possibly also caused by the heat, it’s kind of like the reverse of what we deal with in the winter. “Ahh it’s been so Gosh, darn hot out this summer,” that many folks are hanging out inside for the air conditioning. So, of course, viruses spread more easily indoors, which is why we often see a spike in infections, as I mentioned in the winters, when folks had indoors to avoid the cold. So, they’re doing a lot of that now to avoid the heat.

Zoe Rothblatt  02:57

Right! Who wants to do a picnic outside in 92 degrees with humidity, when you can sit in the nice AC.

Steven Newmark  03:03

Totally! Who wants to go out and get the mail even? Sheesh.

Zoe Rothblatt  03:06

Yeah.

Steven Newmark  03:06

It is absurt out there.

Zoe Rothblatt  03:08

But unfortunately, that makes it hard for social distancing, or extra…

Steven Newmark  03:12

Right.

Zoe Rothblatt  03:13

…precautions that you’re afforded outside versus inside.

Steven Newmark  03:16

Totally. I mentioned Hawaii earlier; Hawaii had a small COVID wave this past winter, which likely means less immunity for its residents. And that could be a factor in why COVID has just been spreading more easily over there. Will this continue to grow? Who knows?

Zoe Rothblatt  03:28

And I’m not sure if you know this, but also is it like more challenging to get a vaccine over there just by the nature of, like, travel from some of the islands to health care places?

Steven Newmark  03:39

That’s a great question that I do not know the answer to. Let’s put a pin in that and get an answer before we get to the end of our show. Maybe if not, we’ll get an answer for our next show. I don’t know the answer to that. I mean, obviously, you know, it goes without saying that anywhere in the world, anywhere in the United States, the more remote location you’re in, the less access you have, generally, to healthcare and then healthcare facilities. So yes, that stands to reason that if you’re in certain parts, certain islands, you’re going to have less access, generally.

Zoe Rothblatt  04:05

Yeah. Which could contribute then to the less immunity. Like you said there was a smaller wave in the past winter, and then also just by nature of access to vaccines.

Steven Newmark  04:16

Yeah, absolutely. And just as a reminder, as you mentioned, I think the FDA is recommending an updated formula to target these newer mutations. And we’ll find out what’s coming, vis-à-vis, new vaccines for the fall in the coming weeks, and we’ll be sure to keep everyone updated. Hopefully, a formula targeting the current mutations will be made available soon.

Zoe Rothblatt  04:33

Yeah, that’s exciting. And I think we mentioned in a previous episode that they’re working on a combined shot flu and COVID. It won’t be available for this season. But I feel like that’s still on my mind, as like, as we hear about more vaccine news to keep learning more about that too, because that would be fun.

Steven Newmark  04:49

Yeah, that will be great. All right, well, M-pox, it’s still around. Monkeypox cases in New York City, for example, are four times higher than they were last year. However, that’s still lower than it was in 2022.

Zoe Rothblatt  05:01

And I guess the good news is that the U.S. has a less severe strain that’s dominant. So, I guess it’s just like not such an active threat, per my professional opinion as an advocate.

Steven Newmark  05:13

Yeah, exactly. Moving on, Norovirus. Cases are increasing and Norovirus, very important, can be stopped with handwashing. So, make sure you’re doing that.

Zoe Rothblatt  05:22

Yeah, this is an ugly stomach bug that can really take a toll on you and it is not fun. So, definitely, handwashing is greater than spending your night or few days in the bathroom.

Steven Newmark  05:34

Definitely! Pertussis, or whooping cough, is increasing in pockets of the country, like Kentucky and Delaware. Over in England, cases reached a record breaking level, recently of whooping cough. This is preventable with a Tdap vaccine. So, be sure to get that Tdap vaccine, every 10 years.

Zoe Rothblatt  05:49

Yeah, that’s a good public health call out reminder, like check your vaccine records. I was due for it recently and just like kind of came across that by accident, but good to stay on top of!

Steven Newmark  05:59

Yeah, you don’t want to get whooping cough. This isn’t 1800s.

Zoe Rothblatt  06:02

No, especially when you’re immunocompromised. I feel like I would feel quite lousy.

Steven Newmark  06:07

Totally. Measles has been detected in New York City. Vaccinations against measles offer a high degree of protection. Two doses of the combined measles mumps and rubella, the MMR vaccine, are 97% effective. So, just like we said, with the Tdap for whooping cough, make sure you’re up to date on your MMR vaccines as well.

Zoe Rothblatt  06:24

Yeah, I guess the bottom line with all of these is, like, there are viruses circulating like to some extent they’re circulating to a normal level, like norovirus comes I think like it has a peak season every year. Measles, like vaccines are so effective, like it shouldn’t really be spreading and we’ve seen it quiet for a long time, but it does pop up in communities. But just as a really good idea to be like talking to your doctor about what’s going around and make sure that you’re up to date on all of your vaccinations.

Steven Newmark  06:50

Absolutely! One illness that does not have a vaccination is bird flu. It doesn’t have one publicly available, is bird flu, few more poultry workers in Colorado have tested positive; all the cases are mild. Health officials continue to characterize this threat to the general public has a low and the virus, as far as, is known has not spread from person to person. It’s only spread from animal to human, not human to human.

Zoe Rothblatt  07:13

So yeah, that’s good news. And then I guess, not necessarily like a virus, but just thinking about the heat. Like what you mentioned before where I think most of the country is experiencing a heatwave, it’s really important to think about health in a time like this, because some of your medications can lead you to be more dehydrated, can cause higher sensitivity to sun; you get sunburned much easier than you would have otherwise, or just make it harder for you to stay cool, or contribute to you feeling lightheaded. So, just double check with your doctor on what medications you’re taking and how to, you know, just like stay hydrated, and cool, and healthy during this heat.

Steven Newmark  07:49

Yeah, here’s my language, “It totally sucks, this heat.” You know, in June, we’re getting emails or I was getting notifications on my phone, like “unprecedented heat. It’s June! It’s June!” I’m like, June is now part of the summer. Unfortunately, the summer is like forever now. This week, this particular week that we’re recording, this is like the fifth week in a row and I’m getting alerts on my phone, “Oh, the heat wave is going to be extended another day! The heat waves gonna be extended another two days! The heat waves gonna be…” I’m like, it’s not a heat wave, that’s the temperature! That’s the weather! It’s the summer!

Zoe Rothblatt  08:15

It’s true, yeah.

Steven Newmark  08:16

Unfortunately, we just have to deal with it. There’s no other way around it.

Zoe Rothblatt  08:19

Yeah, it’s like it’s not a wave. Speaking of all the viruses, like, makes me reminiscent of flatten the curve in two weeks, like, okay…

Steven Newmark  08:27

Oh, right!

Zoe Rothblatt  08:27

just another day. And it’s like, “Guys, this is happening. Like we have to just admit it.”

Steven Newmark  08:32

Right. First of all, it’s not just July and August. It’s June, July, August, September, for now. Someday, it’ll probably extend into May and October as well. But yeah, and it’s everywhere. I don’t know, maybe we should move to Greenland or something. But, until then we’re gonna have to stay hydrated. As you said, stay cool, stay hydrated as best you can. And definitely understand that it does cause lightheadedness, and it’s not fun to get heatstroke, it’s not fun to even just be out in the heat for extended periods of time.

Zoe Rothblatt  08:56

Yeah, I think it’s also it’s one of those that like, seems so obvious, like, “Oh, you’ve experienced a summer every year you’ve been alive. Of course, you know how to handle the heat.” But, it can really sneak up on you

Steven Newmark  09:05

Totally!

Zoe Rothblatt  09:06

Especially when you live with underlying illness.

Steven Newmark  09:08

Yeah, absolutely. It affects your decision making too. I read a study about how it affects your decision making. I’ve read another study how it actually reduces your IQ points, by being out in the heat for prolonged periods of time. So, you’re not playing with your 100% self when you’re out there for too long.

Zoe Rothblatt  09:23

Well, turning to our final bit of news, there was a recent ASIP meeting, that’s the committee for the CDC that reviews the vaccine data and makes recommendations. And like you mentioned at the top of the episode, they’re still determinations for the COVID vaccine. We don’t have the new formula yet, but they agreed that everyone six months and up should get the COVID and flu vaccines this year and that, for COVID, they should target the new variants of this JN 1 lineage.

Steven Newmark  09:53

Yeah, they also simplified recommendations for RSV, respiratory syncler…Ahh I can’t pronounce. Can you pronounce it, Zoe? Come on. Syncytial virus, well whatever, RSV!

Zoe Rothblatt  10:03

Yeah,

Steven Newmark  10:03

the RSV vaccine, they now recommend all adults, 75 years of age and older, to receive a single dose. Adults 60 to 74 should get a single dose of RSV vaccine, if they’re at increased risk of severe disease. And adults 60 to 74 are at higher risk, if they have certain chronic medical conditions, such as lung or heart disease or if they live in a nursing home or long term care facility.

Zoe Rothblatt  10:23

And the last bit of vaccine news from this meeting was that there’s a new pneumococcal vaccine recommended. So, this is a new 21 valent pneumococcal conjugate vaccine. So, the abbreviation is PCV 21. And it’s now an option for adults aged 19 and older. And basically, what that just means is that it includes some newer strains that are not contained in the current vaccine. And that it also, no longer contains certain sub variants that are like no longer circulating. So, really just an update.

Steven Newmark  10:54

Excellent. Well, so the bottom line is there are things out there that could keep you up at night, if you want. But of course, there are steps we can all take to live our best lives. Get vaccinated, wash your hands, take extra precautions as necessary when local cases spike. And stay cool and hydrated to prevent heat related illnesses.

Zoe Rothblatt  11:09

Great job packaging the positivity!

Steven Newmark  11:11

Yeah, there you go! Boom!

Zoe Rothblatt  11:12

There we go. Lots of public health measures to stay positive.

Steven Newmark  11:15

Absolutely!

Zoe Rothblatt  11:18

Well, I think you know, my next question, what did you learn today?

Steven Newmark  11:20

There’s a lot out there, but nothing that really should keep you up at night, is what I would say. That’s the learning.

Zoe Rothblatt  11:25

Yeah. And I learned from you a little bit more about what’s going on in Hawaii.

Steven Newmark  11:28

Well, we hope that you learned something too. And before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  11:36

Well, everyone, thanks for listening to “The Health Advocates,” a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  11:49

I’m Steven Newmark. We’ll see you next time.

Narrator  11:55

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to “the Health Advocates,” a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:20

Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.

Zoe Rothblatt  00:26

And today we’re joined by Dr. Mojola Omole, who is a Breast Surgical Oncologist and General Surgeon with the Scarborough Health Network in Toronto. She is president of the Black Physicians’ Association of Ontario (BPAO), a consultant for Anti Black Racism and Anti Black Oppression Training, Chair of Specialist Issue in the CMAJ on Anti Black Racism and Medicine and Chief Medical Officer. She also hosts a biweekly podcast with the Canadian Medical Association Journal and her podcast explores the intersection of scientific advancements and social health issues and find voices of patients, clinicians, and advocates.

Zoe Rothblatt  01:02

Welcome to the Health Advocates, Dr. Omole!

Dr. Omole  01:04

Thank you so much for having me.

Steven Newmark  01:06

Can you start by introducing yourself to our listeners, your background, and what it is that you practice beyond what we have gone over already in your bio.

Dr. Omole  01:12

So, I’m a general surgeon and a breast surgical oncologist. So, as a breast surgical oncologist, my main focus is breast cancer. I do do other cancers. But my background training and specialty is breast surgical oncologist. So, it’s involved in the care and management diagnosis of breast cancer. I also do work as a DIA consultant for medical boards and different organizations in terms of Anti Oppression and Anti Black Racism Training. And I’m also the President of the Black Physicians’ Association of Ontario (BPAO).

Zoe Rothblatt  01:13

Awesome! Well, we’re excited to have you and dive into some of your work. But before we do, I want to ask how did you choose breast cancer?

Zoe Rothblatt  01:50

That’s great!

Dr. Omole  01:50

That’s a really good question, I can’t remember. There were a lot of things I didn’t enjoy in the OR. I was like, “I don’t love lung cases,” “I don’t love this.” And so quite a few of the things that I do is because I’m like, Oh I do, but then I really enjoyed breast cancer. For me, it’s like I really like the connection of being able to do advocacy work, being able to do community outreach. And unlike other cancer domains, that’s a much longer longitudinal care that’s associated with breast cancer typically, and I really loved the multidisciplinary aspect of it. So, that was part of the reasons I chose breast.

Steven Newmark  02:23

Interesting in terms of your advocacy and work on Anti Black Racism and Anti Oppression Training, you’re a strong advocate, obviously for patients and clinicians. Well, what are your main goals, what you’re trying to achieve?

Dr. Omole  02:33

So, I would say that, especially like with my work with Black Physicians’ Association of Ontario, also, there’s like two prongs to it. One is for advocating for increase of Black physicians in Ontario, currently, we are Black Ontarians make up about 4% of the population and Black physicians only make about 2% of it. We know when there is racial and ethnic concordance, there is an increase in better care that patients receive, there’s been studies shown for maternal health. And to be frank, all of our data that we use in Canada is from the U.S. and the U.K., because in Canada, we don’t collect race based data. But we know when there’s racial concordance, pregnant people and their babies do better, we know that there’s just differing treatment. And so, part of what we advocate at the Black Physicians’ Association of Ontario is to increase the amount of Black physicians in medicine, once we have that, we also have to maintain well-being and part of that is there quite a lot of like systemic racism that people are just not aware of, and being able to advocate, to help people to understand what that looks like. I always say when I give workshops, that we are all capable of Anti Black Racism, even Black people are capable of Anti Black Racism, and part of it is being able to understand what our positionality is, and that way we can better combat Anti Black Racism. And finally, it’s just community outreach to increase health awareness around different diseases. I’m very passionate about oncology, and so breast, prostate and also maternal care. That’s another thing that we do quite a lot of advocacy work around in terms of outreach to the community, and also Black mental health. So, in terms of just having the community understand how to access resources, how to advocate for themselves, because it is quite challenging when you’re someone, whether it’s racialized, or you are of a different gender, different sexuality. There’s barriers when you try to advocate for yourself.

Zoe Rothblatt  02:49

And can you talk to us a little bit more about some of the maybe underlying reasons of why there’s such a small percentage of Black health workers in, I guess, in the workforce and some of the steps you’re taking to improve that.

Dr. Omole  04:32

I would say that one of them is that if you look at most medical training, people are legacy students. I also am a legacy student. My father was general surgeon. I have like a very different upbringing. I also grew up in like rural Ontario, but I have a very different upbringing when it comes to being able to be savvy in terms of navigating the system. That is a huge barrier. Plus we will have dreams to become doctors, but not a lot of people have the: 1. The financial means to do it, because it requires you to take your summers off to be doing unpaid work on paid research. For some people, that’s just not possible for like many people in the racialized communities to do. And also just understanding how to navigate the system to increase your G.P.A., the extracurricular that’s needed, and how to do your application properly. All of those things are barriers that when you have someone who is in medicine in your family, or even like your neighbor is a doctor, so you can go to them to ask for help, that really changes things. And for a lot of our Black, indigenous and racialized folks, and low income folks, that’s just not something that they have accessible to them. So, that’s part of the work we try to do at BPAO. I always say that I was lucky that my dad was my first mentor. So, I want to be the first mentor for other people, too.

Zoe Rothblatt  05:42

Yeah, that’s amazing that you’re doing that. And it’s so interesting, because it really mirrors the conversations that we have in the patient community of like that peer to peer support and navigating the system. And I just hadn’t thought about it so much from the provider perspective of how much you have to navigate early on.

Steven Newmark  05:58

I was going to ask, you are chairing a special issue in the Canadian Medical Association Journal on Anti Black Racism in medicine. What is this special issue going to do? And what key problems does it expose?

Dr. Omole  06:08

So, that was released last year, the special issue that we did, and that really was to bring to the forefront what Anti Black Racism and what systemic barriers look like in medicine. And so we had topics that was looking at mentorship and medicine for Black medical learners, we had topics around prostate cancer, and for example, there is in Canada, P.S.A. (Prostate-Specific Antigen) is not routinely done. But there’s an argument that measuring the prostate specific antigen in Black folks, because Black people have a higher rate of prostate cancer and more aggressive prostate cancer, that that should be included in the screening. So oftentimes, what we’re doing is that like, we don’t want race corrections for different tests, however, we need to understand that whether it’s breast, prostate, or other diseases, we just have a different biology. And that not one size fits all is what works. And so part of that was to advocate for and to talk about the differences in managing different disease processes, and also just navigating the system that Black medical learners face.

Zoe Rothblatt  07:10

And, I actually have a question on that. Can you talk to me a little bit about how you navigate the idea of maybe over screening, but also accounting for the differences among populations, like you’re mentioning?

Dr. Omole  07:22

I think that it’s important to understand and I do my work around this and breast mainly, I know just a little bit of a prostate from doing the special issue, is that I think that we miss use the word over screening, and not necessarily understand that there’s different biologies to different types of cancer, and that there is a difference in the oncological outcomes for different groups. There’s a breast surgeon named Lisa Newman, in New York, that’s all I remember, now, she’s coined this term anthropological oncology and it is that different people have different subsets of biology. And so this is looking at people from the West African region, I use the word people, not women, because just to also be inclusive of our trans and non-binary folks, because they also still get breast cancer. And that when you look at the tumor biology of breast cancer in West Africa, and it’s very similar to the biology of Black Americans and the Caribbean, because of the transatlantic slave trade, like that is the same gene pool that’s traveling, when you look at East Africans, they have a completely different human biology. And it actually mirrors what you would see in the Middle East, because East Africans that were part of the slave trade went to the Middle East and not to the colonies in the U.S. and in the Caribbean. And so that our D.N.A. is just, I’m West African, I’m Nigerian. So, our tumor biology is just different, like we present differently, and we do differently with the same medications. And so therefore, we should screen differently. So, for example, in breast cancer, the median age of presentation is 63 years of age. But when you actually look at Black people, the median age of presentation is 45. So, you have to screen those populations differently; It’s not a one size fits all. When I talk to patients, I always say every breast is different. So, if that holds true for management and treatment, that should also hold true for screening.

Zoe Rothblatt  09:06

Yeah, that makes a lot of sense. And is this something that’s taught in medical schools? Or is that part of your work now, to get people more aware of these differences?

Dr. Omole  09:14

It is not taught in medical school. Medical school is wholly lacking in having an understanding of how different populations present with diseases. Part of some of the work that the CanMED, which is kind of our, for Canada, the governing principles for medical learners, is trying to revise is that we need to put this in there. We need to be advocating that different populations present differently. For example, things that I know are mainly from doing the CMAJ podcast, like the treatment for Gout in Asian population actually can cause severe illness and death because they don’t have a gene that allows them to metabolize it. That’s not taught in medical school, that’s not even taught in residency, but these are the kinds of things that we need to start incorporating is that we need to teach students “okay, this is the things that you need to know, but in certain populations these things can be different.” But, we also have not researched them. So, like this wave of researching of making sure that we’re including ethnic variations is very new.

Zoe Rothblatt  10:10

Yeah, my background is in Public Health and I’ve just learned a lot about the lack of research on these topics. And

Dr. Omole  10:16

For sure.

Zoe Rothblatt  10:16

like how necessary it is to start teaching early on about this, we talk a lot about here in our organization about how Psoriasis and different skin conditions are often taught in medical school using images of white skin. And there’s such a lack of diagnosis, because just something as simple as images are not inclusive.

Dr. Omole  10:36

Yeah, and there’s some people in Canada who have been doing work around. There’s a dermatologist out at Memorial, his name is Boluwaji Ogunyemi. He’s been doing quite a bit of work in terms of trying to update text to include variations of skin conditions in darker skin tones.

Zoe Rothblatt  10:52

It’s amazing and such necessary work. I mean, we know the time to diagnosis is a huge challenge. And I guess I’m thinking about that you’ve done a lot of work around breast cancer screening, and I was hoping you could describe the issues around that and what you think the recommendation should be. I think there was a recommendation by the Canadian Taskforce on Preventative Healthcare. Can you talk to us about this?

Dr. Omole  11:16

So, the recommendations, they say it’s a draft recommendation, but I’m like, “you publicized it, so, not much of a draft,” but it’s open for consultation for like two weeks for people to have input into it. Their recommendation is to start screening at 50. And to do it every two to three years. This is against every other Taskforce, whether it’s the U.K. or the U.S. task force that recommends screening starting at the age of 40. And to do it yearly. In addition, the Canadian Radiologists’ Association has also said screening should start at 40 and it should be yearly. So, they’re in direct opposition to other Task Forces. I would say that probably one of the driving forces, that’s not clear there, is that this is a cost analysis and this is not necessarily of a lives being saved. So, as I said, the median age for Black women is 45. So, you want to start screening 10 years before that. So, technically, you should actually start screening at 35. And there are some U.S. groups that advocate for screening much earlier in Black women. So, Black women, Asian women, and Hispanic women all get breast cancer at least 20 years earlier than what is noted in Caucasian women. And this is documented in the data. And so they say that there’s no randomised trials in Canada. But we can’t do that, because we don’t even collect race based data. But if you look at the U.S. data, it’s quite robust and it shows that there’s a difference in there. And we know that if you actually, like “you get the most bang for your buck,” both in life saved in young women with breast cancer. So, that’s like the 40 to 50 age. But we actually like the data shows that screening at that stage saves lives, the majority of Black women do not get diagnosed by screening mammogram for breast cancer, they come in with a physical symptom. By the time you can feel a lump in your breast that is a cancer, it’s usually around two centimeters. So, that completely takes you from stage zero, stage one, to probably stage two breast cancer. So, there’s more aggressive treatment versus doing like when you have a screening mammogram when you find something at stage zero, stage one, much less intervention that’s done at that stage.

Zoe Rothblatt  13:12

And why do you think there is such a difference from what this task force recommended to you know what you’re saying, like Canada’s neighbors are doing?

Dr. Omole  13:20

I think it’s money. I think it’s about cost savings, because they even said to stop screening at 74. To me, that’s just ageism, my mom is 80. And I mean, she’s just on like two medications. And so why shouldn’t she? She’s not going to die anytime soon, God willing. So, why should she not continue to get breast screening? And they put it in there, the caveat that well, like, if people want to get screening at 40, it could be a shared decision with their family physician. The problem with that is there’s a lot of people who don’t have family physicians and the self-referral to breast screening differs across Canada, B.C. is 40. So, if you’re 40, you can go yourself at 40 and do that. But until the fall, that’s not available in Ontario, and it’s not available in Quebec and in the Eastern Provinces. So, there’s quite a variation. And so we’re allowing more people to be diagnosed at later stage breast cancer and have more treatment than having earlier stage. And so to me, it just seems like it’s a cost analysis and not so much about lives being saved.

Zoe Rothblatt  14:16

And I imagine, yeah, that makes such a difference for insurance coverage. If the recommendation is later and to cut off at a certain point, even if like you’re saying you can go to your family physician and say I want this I bet there’s a barrier then when you try to get coverage for that screening test.

Dr. Omole  14:32

For us because we’re like universal pay, there’s no issue with coverage.

Zoe Rothblatt  14:35

Oh okay.

Dr. Omole  14:36

so like you’re gonna get it free, but we don’t like there’s a lack of Family Physicians in Canada, like people don’t have primary healthcare, I think can remember the data I think up to like 20% do not have a primary healthcare physician. So, they’re using like episodic care and walk in and that’s not the right way to beginning routine screening, whether it’s your mammogram, whether it’s being sent for a colonoscopy or whether it’s like a pap smear like people just won’t go.

Zoe Rothblatt  15:00

Oh my gosh, what I’m hearing from you is we need more family physicians, we need more Black providers, and we need better guidance around screening. There’s a lot to do.

Dr. Omole  15:09

We do. Yeah.

Steven Newmark  15:10

well, it’s we have a lot of work to do, I guess, both in Canada and South of the Border as well. As we wrap up, I just want to ask what advice you might have for other providers on how they can advocate for their patients?

Dr. Omole  15:19

I would say that the main thing is to ensure that you’re up to date, that you just don’t go with what the Task Force says, but that you get to know your patient and understand their risk factors and that there might be ethnic variations with each patient and trying to learn more. I mean, part of our role as providers is lifelong learning. And this is part of it. So, staying up to date so you can inform yourself. It is very challenging, because family providers have so much that they have to deal with that it’s hard to stay on top of it. And that’s why we need better guidance from our governing bodies and from Task Forces. So, it is easier to get the information, but the onus is put back on us as physicians to be doing that right now.

Steven Newmark  15:57

Great! Well, thank you so much for your time today and for all that you’re doing on behalf of patients and the entire medical community. This has been a real learning experience for us. And we look forward to talking more about it.

Dr. Omole  16:09

Thank you so much for having me.

Zoe Rothblatt  16:10

Thank you so much for joining us. And hopefully next time we chat with you, we will have increased that 2% number.

Dr. Omole  16:16

Yeah, let’s go!

Zoe Rothblatt  16:19

Well, Steven, that was a really great conversation with Dr. Omole, what did you learn today?

Steven Newmark  16:23

Yeah, for sure. I guess a very specific learning is that I learned that 4% of the population of Ontario is Black, I did not know that. And 2% of the Doctors in Ontario are Black. So, that’s just doing my basic back of the envelope calculation. That’s half of what it probably should be to be representative of the population itself.

Zoe Rothblatt  16:41

And for me, it was really interesting our conversation about the lack of research on a lot of these disparities in Healthcare, and it’s not taught in medical school, and there also needs to be more efforts to research and learn about these differences.

Steven Newmark  16:56

Absolutely! Well, we hope that you learned something, too. And before we go, we want everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  17:04

Well, everyone thanks for listening to “the Health Advocates,” a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  17:18

I’m Steven Newmark. We’ll see you next time!

Narrator  17:23

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to “the Health Advocates,” a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.

Zoe Rothblatt  00:27

And today, we’re joined by our colleagues, Adam Kegley, and Kelly Gavigan, to talk about a recent survey we did on the experiences of the LGBTQ+ community and caring for their inflammatory bowel disease. In this talk, we’ll dive into the findings, what surprised us, what was confirmed to us, and also, you know, what’s next, now that we have this data, how to educate our community?

Steven Newmark  00:48

Excellent. Well, let’s dive in.

Zoe Rothblatt  00:51

So, Adam, Kelly, welcome to “the Health Advocates.” Why don’t you start by introducing yourselves? Adam, let’s start with you.

Adam Kegley  00:58

Sure. Hi, everyone. And Hi, Zoe, my name is Adam Kegley. And I’m the Associate Director of Global Partnerships at the Global Healthy Living Foundation. So, I helped lead a lot of our global facing work and partnerships with other patient organizations around the world and also helped lead this project which is near and dear to my heart on the experiences of LGBTQ+ people living with inflammatory bowel disease. So, it’s great to be here and to speak about it. Thanks for having me.

Zoe Rothblatt  01:25

Yeah. Thanks so much for coming on. And Kelly..

Kelly Gavigan  01:27

Hello, Zoe, and everyone. I’m Kelly Gavigan. I’m the Chief Data and Analytics officer at the Global Healthy Living Foundation. And I worked with others on the development of the survey that we’ll be talking about today and analyzing the data that was captured from this survey participants, many of whom are from our community. And many were also new to us and found us through the survey.

Zoe Rothblatt  01:52

Great, yeah, I’m excited to dive in. And like you guys mentioned, we’re going to talk about the experience of inflammatory bowel disease patients specifically for the LGBTQ+ community. And before we get started, I figured it’d be a good idea to just do a quick review of IBD, the shorthand, inflammatory bowel disease. I actually live with Crohn’s disease, which is one of the two main types so, I feel like I’m probably qualified to give this overview, I’ll give you guys a talking break before you dive in. So yeah, basically, inflammatory bowel disease is a chronic autoimmune disease of your digestive tract. The two main types are Crohn’s disease and ulcerative colitis. And the difference between those two is that Crohn’s can be anywhere from your mouth to your anus, ulcerative colitis is kept to the large intestine, and the common symptoms of it are diarrhea, loose and bloody stool, loss of appetite, fatigue, fevers, the list can go on, and I’m sure we’ll learn more about the symptoms today. But there’s a lot of great treatments out there to treat IBD like biologics, so you know, I’m in remission. There’s a lot of hope for people with IBD. And yeah, I’ll turn it over to you guys. Specifically, Adam. Let’s start with what challenges does the LGBTQ+ community face generally in healthcare and also with IBD? You know, like, what did we know before going into the survey?

Adam Kegley  03:14

Sure. Thanks for that. I think I would say first that LGBTQ+ people, and just to define that really quickly, for anybody who’s listening, it’s Lesbian, Gay, Bisexual, Transgender, Queer and Questioning, and others community. That’s what we mean when we say the quote unquote, “alphabet soup acronym of LGBTQ+.” So, I’d say that LGBTQ+ people’s experience in healthcare really can depend on whether they have an accepting and understanding healthcare professional or healthcare team who is informed on health care related to various non heterosexual and non cisgender sexualities and gender identities in their lives. That can really save a patient crucial time at their appointment, that can save them from having to educate their own provider about their own needs being an LGBTQ+ person or a non cisgender person about very specific health care matters that might pertain to them. It also, of course, reduces most obviously discrimination in the health care setting, either about their sexuality, gender identity, or both, which is probably I would say the main challenge LGBTQ+ people might face in healthcare settings, or they possibly can face that includes either actual or perceived or anticipated discrimination. I wanted to stress that too, because anticipated discrimination can also hinder an LGBTQ+ person from even going to see the doctor because they’re nervous that they might be discriminated against. And that’s a very real thing that does happen sometimes. It can also impact trusting your health care professionals or actually providing you with the best care or even opening up about issues that might specifically concern you as an LGBTQ+ person, maybe living with a chronic condition like IBD as well. Studies from the Health Services Research have shown that at least 16% of LGBTQ+ people face discrimination actively in healthcare settings. Even things like Intake Forms being non inclusive of LGBTQ+ identities, like sexualities and gender identities could make an LGBTQ+ person feel apprehensive about their appointment and could lead to less personalized treatment or maybe even poor outcomes for them. Our survey actually found that one in three LGBTQ+ people living with IBD did not find their doctor’s office Intake Forms inclusive. And I would say with IBD, specifically, all those things can come into play those challenges that I mentioned, like actual or perceived discrimination, and those things can obviously lead to worse and health outcomes like experiencing greater frequency of flare ups and the symptoms associated with them. And it can also more deeply impact mental health and sexual health and a lot more.

Zoe Rothblatt  05:48

Thank you for that. Yeah, it’s hard enough being a chronic illness patient. And it’s important to remember like how much your identity and just lived experience plays into that. So Kelly, turning to you, you mentioned you helped in building the survey. Can you talk to us about what the aim of the survey was?

Kelly Gavigan  06:05

Yeah, absolutely. So, we wanted to shed light on the unique challenges that the LGBTQ+ individuals with IBD face, as Adam mentioned, and the specific needs that they have. So, we really wanted to better understand certain challenges that arise along the patient journey for LGBTQ+ people with IBD, and dive into the emotional and social impacts of living with IBD as a person who is LGBTQ+.

Zoe Rothblatt  06:36

Alright, so let’s go in what were some of the main findings.

Kelly Gavigan  06:40

So, we had about 250 people complete the survey, all of the participants identified as being LGBTQ+, and nearly 70% were actually between the ages of 18 and 34, which is amazing to have such high engagement among young people. On top of that, about 44% of participants identified as a gender other than cisgender women or cisgender man. So again, we were really thrilled with the variety of representation among the survey participants. And nearly 80% of participants reported using medications as a method for managing their IBD, which is great, but that does mean that more than 20% were not on medication for their IBD. And what’s more, most participants reported seeing a gastroenterologist for the care of their IBD. Again, which is great and to be expected, but a surprising quarter of participants reported primarily seeing a primary care provider to treat their IBD. And so you know, that may not seem like a huge deal. But, we actually found that the participants who were only seeing a primary care provider were 10 times more likely to not be on medication compared to participants who are seeing a gastroenterologist and that is a big deal. And unsurprisingly, a quarter of participants reported that their IBD is not very well managed. And then half of the participants reported that their doctor was aware of their sexuality or gender. And among those participants, two thirds reported that sharing this with their doctor did not affect the care they received, and a quarter reported that it positively affected their care. Notably, two thirds of respondents reported that there are not enough resources, specifically, for LGBTQ+ people living with IBD. And we asked, you know, in order to feel more supported in managing their IBD, what did they need: main participants said that they wanted more research on LGBTQ+ IBD populations, more websites with resources, and open communication between LGBTQ+ IBD patients and their health care providers.

Zoe Rothblatt  08:59

Adam, I see you nodding a lot. And I want to turn to you and ask what surprised you in what Kelly just talked about?

Adam Kegley  09:07

Yeah, I was nodding quite a bit because Kelly and I have worked really closely on this. And it’s all been so interesting to us. I think sometimes the very similar thing surprised us and probably things that we were expecting, they were also confirmed for us, both of us and all the others on the team too. I think one of the most surprising things to me in which Kelly mentioned and that was a very positive surprise was the amount of respondents who identified as a gender other than cisgender man or woman, it was almost 45% of respondents, as Kelly said, and that’s really impressive considering that this particular population can be hard to reach and engage in surveys like this or any kind of health care related studies. And that’s in particular due to some of the challenges that I mentioned earlier and a lack of trust and an apprehension or perceived discrimination or anticipated discrimination. So, I was really pleasantly surprised by that when we discovered it, because I think it gives a real nice depth and breadth to the diversity of respondents actually talking about their experiences and relating those to us.

Zoe Rothblatt  10:11

For me, I guess I was like, positively surprised by that number. Kelly, you mentioned, I think it was 14%. That said, when they shared their gender identity or sexual preferences, that their care was like, positively impacted. I feel like so often we’re hearing negative statistics. And it was just amazing to hear that, you know, being open and honest with your doctor can lead to more positive experiences for patients.

Kelly Gavigan  10:36

Yeah, absolutely. And actually, I can even expand on that. For me, I was surprised to know that, you know, among the participants who had not disclosed their sexuality, or gender to their provider, half of them had to the other half, you know, had not. Three fourths of them did not think it would affect the care that they received. But at the same time, nearly 20% of the people who had not disclosed this thought that disclosing this information would negatively affect their care. And that’s, you know, much more than the percentage of people who reported having a negative experience after disclosing this information to their doctor. And I think that this really speaks to, what Adam was saying earlier, about the perceived, you know, effects that it might have on one’s care, and likely explains why at least that portion of people, you know, chose not to disclose this information to their doctor. And I think, like I said, there were three fourths of people who did not think it would have an effect on their care. And that is the kind of a surprising number, I think. And I think that also explains why they didn’t think it was necessary to disclose their sexuality or gender to their provider, because they didn’t view it as something that would affect their care either way.

Zoe Rothblatt  11:50

I was just gonna say, it makes me think about, you know, when it comes to advocating for yourself, it’s so helpful to hear from other advocates and patient experiences. And what you just said is a perfect demonstration on how this survey tells us, like if we share more patient stories about how it positively impacted care, it can hopefully reduce some of that perceived discrimination that we’re talking about. And people could feel more comfortable, like even taking that first step to advocate for themselves.

Adam Kegley  12:18

I couldn’t agree more. And I think to just to add on to that really quickly, is that with the people who may not have thought that disclosing their sexuality or gender identity would affect the care that they receive, and those that possibly thought that it would negatively affect the care that they receive. There’s lots of factors that go into that. But, the I think the biggest thing is that if you find a provider who’s accepting, understanding, and informed, studies have shown that definitely it can improve the care that you receive as an LGBTQ+ person, because it’s that much more personalized. So, I just wanted to throw that out there too.

Zoe Rothblatt  12:54

So, building on that a little bit, Adam, what advice do you have for patients who are nervous about being open with their doctor?

Adam Kegley  13:01

It’s such a great question. And it’s also a tricky one, because it kind of asks like, how do you tell someone to come out in a healthcare setting when they’re unsure, it’s safe to do so. And for me, and for I think many of us, including us on this recording, of course, more familiar with the intersections of health outcomes and revealing your gender and sexual identities. And it can be a really crucial conversation to have with your healthcare team, but with the right health care team. And so that’s the number one thing that I would say is most important is that it’s really important that those conversations take place with someone who makes you feel comfortable, accepted, and understood as an LGBTQ+ person. Trust, or at least the potential for trust is incredibly important in this particular case. And that’s really because all of this isn’t just about your IBD, or another chronic condition that you might live with, it’s really about your IBD within the context of the rest of your life. And I say that with really pertaining to any chronic condition, it’s about that chronic condition within the context of the rest of your life and that includes your sexual orientation and your gender identity. Your sexual practices, maybe you’re on hormone replacement therapy, and there could be potential interactions between that and some medications for IBD, for example, and there’s a lot more. So really, the most important thing is to find that right health care professional and if you live in a less populated area or areas with less options, I’d encourage exploring reviews online options for telehealth or virtual visits with someone who might better suit you. There are of course resources out there that can help you find LGBTQ+ friendly providers locally and that includes the Gay and Lesbian Medical Association’s provider directory. The National Center for Transgender Equality also has great medical and health related resources on their site. You could of course also ask your LGBTQ+ friends about their doctors and specialists, are they happy with the care that they receive? Would they recommend them? I know I personally see a doctor who’s part of the LGBTQ+ community. And while that’s not necessarily needed for everyone, it does make me feel more open and willing to speak about my health and ask questions because I do feel a bit safer and more comfortable, just a bit more at ease with a provider with whom I can identify in some very specific ways. And I say this regularly nowadays, but I’ll say it here again, is that some of your healthcare needs as an LGBTQ+ and/or non cisgender person with IBD are different from those of heterosexual and cisgender persons. And that is perfectly okay and normal. And there should be room for everyone to get the tailored personalized care that they need.

Zoe Rothblatt  15:40

Thank you for that. Thanks for sharing those tangible tips that I think will be really helpful. Especially I know, like you mentioned, if you live in an area with not so many providers, I hear that a lot from our community. So, I so appreciate you zeroing in on options for that. So, looking ahead, now that we’ve learned all this, what’s next? I’ll let Kelly go first.

Kelly Gavigan  16:01

Sure. Yeah, thanks Zoe! I think that I really would like to build off of what Adam just said, honestly, because I think that a lot of what this survey confirmed is that, you know, people want more information specific to being LGBTQ+ and having IBD. And there are multiple aspects of living with IBD lobbying a person who is LGBTQ+ that are just not being discussed. And we’re doing our part to offer resources for people who are LGBTQ+ and have IBD. But of course, I think that we want people to be able to access resources that come from their doctor, if that’s what they want. And so I think that, that requires a lot of building knowledge. And it requires building research and building trust. So, I would say those three things are what would come next.

Zoe Rothblatt  16:53

And Adam, turning to you. Yeah,

Adam Kegley  16:55

I couldn’t agree more with what Kelly said. And that’s exactly what I would say, too, is that there’s a very clear need from what we had anticipated from our research before doing the survey was that there was definitely a massive lack of not only research, but resources on this particular community in living with IBD. And I would say that was confirmed for sure by the survey as well, but what respondents said, and we’ve developed some and that we’ll continue to work on developing more based on the findings of the survey. And I think overall, just adding on to what Kelly said, because she really summed it up perfectly is that I’m just really hopeful that people will see these resources as they come out and know that we didn’t just do a survey just to do a survey, but we’re actually taking action with the results and producing the resources that are tailored specifically for this community, because there’s really a great need and a great desire for them. We heard anecdotally in the open response section, time and time again, very similar responses to what we heard in the actual survey questions themselves, kind of the multiple choice survey question themselves, why we can’t cover everything for every single person individually, I just hope that, that will be a really great start in the right direction to really start to change the conversation or even rather, to help start them in some circumstances.

Adam Kegley  17:19

Well, thank you guys both so much for coming on the show and sharing the findings. I think such an important part of doing work like this is also like the dissemination aspect and sharing the results with our community. So, I really appreciate both of your time. Thank you.

Adam Kegley  18:20

Thanks so much, Zoe, and thanks for giving us the opportunity to come out here and talk about all the findings. It’s really exciting and very important.

Kelly Gavigan  18:43

Absolutely. Thanks so much, Zoe, for having us on.

Steven Newmark  18:47

Wow, Zoe, that was a great interview. It’s always great hearing from our colleagues.

Zoe Rothblatt  18:51

Absolutely. I was just reminded how important it is to go to the source patients and ask them about their experiences. And it was interesting to learn, like what was confirmed for us what surprised us and something that surprised me was just how in a good way with and I mentioned this in episode was just how positively patients had of an experience when they were open and honest with their doctor about their gender identity and sexual preferences. How about you, what did you learn?

Steven Newmark  19:19

Yeah, no, I totally agree. That was really eye opening for me as well. I think it goes to the broader point of always being open and honest with your medical professionals, and how much that can help. But my big learning from today really is just how the resources that we have at GHLF, speaking of folks like Adam and Kelly who can provide information and put out surveys and learn things of importance and spread out into the ether how valuable that is. But clearly our number one resources are our patients and the ability that we have to go to our patients and learn from our patients is really a special thing and it was great.

Zoe Rothblatt  19:51

Absolutely.

Steven Newmark  19:52

Well, we hope that you learned something too. And before we go, we want to encourage everyone to check out all of our [email protected]/listen.

Zoe Rothblatt  20:00

Well everyone, thanks for listening to “the Health Advocates,” a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review and definitely hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  20:15

I’m Steven Newmark. We’ll see you next time.

Narrator  20:20

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to the Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.

Zoe Rothblatt  00:27

And Steven, it’s been a minute since it’s been just us too. But we’re original recipe today.

Steven Newmark  00:32

Yeah, there it is. So, let’s dive in. It’s probably a lot of news to cover, right. Let’s see what’s happening out there.

Zoe Rothblatt  00:39

We have some news on infectious disease updates, vaccines, and more. So, why don’t you kick us off?

Steven Newmark  00:45

Sure. Well, speaking of infectious disease, the number one, perhaps new issue of the day is bird flu. That’s the H5N1 bird flu is sickening dairy cattle throughout the United States and state and federal authorities have detected the flu in 12 states, in cattle.

Zoe Rothblatt  01:01

And there have been a few human infections confirmed that are connected to the farms. But, researchers do agree that there’s probably an undercount given the limited testing on this flu.

Steven Newmark  01:12

Yeah, just as a total side note, going off the beautiful outline here. I actually just read an article this morning, how the count is very high in Michigan. But that is in part because Michigan has a very robust counting mechanism with their public health infrastructure up there. So, it appears as though there are perhaps more cases in certain parts of the country, but it’s also likely due to better, if dare I say better, or more robust public health outreach and counting. Anyway, H5N1 is not a new virus and, knock wood, does not seem to be a big threat right now to humans. The virus is not very good at infecting humans, passing onto someone else. But as we’ve seen with COVID, we know how quickly this can change and the opportunity to spread, if we don’t contain it. It could lead to mutations and make things really worse.

Zoe Rothblatt  01:52

Well, I guess the good news is that the U.S. does have vaccines against H5 viruses and its stockpile and last month, government officials said almost five million doses are being filled and finished so they could be ready for use, though right now, there’s no plan to give them to anyone yet, because the CDC maintains its assessment that its risk to the general public is pretty low.

Steven Newmark  02:15

Yeah. And I would just say that the best thing in public health when dealing with infectious disease is that it gets so tamped down so early on that the majority of the public never even hears about the disease or never thinks about the disease which backfires of course, when a disease like COVID starts to rage. And folks do need to pay better attention in order to respond to it because it almost get this false sense of security that things are contained almost on their own when that’s not necessarily the case. But in my career, which spans a few decades now. I’ve seen the swine flu, I’ve seen the avian flu, that came from Asia several times, I’ve seen Ebola, Zika virus, and in those instances, they were able to be tamped down so early on that it never became a pandemic the way COVID did. COVID unfortunately, it was not tamped down. It started, as we know, in China, China through various let’s say anti public health measures did not properly tamp down the virus, and it was highly contagious and it became what it became. So, hopefully this falls into the earlier category and in particular, we hope that happens because in a post COVID world, I don’t know how the general public could respond to another large scale infectious disease.

Zoe Rothblatt  03:24

Right, I was gonna ask, do you think there’s like more eyes on this or like a more fear around this because of our experience that we just had with COVID?

Steven Newmark  03:33

Perhaps a little bit, but I also think the seeing the bird flu actually jumped to human form is a pretty big deal. And also what is likely an undercount, I think is alarming to say the least. I think public health officials know that there’s not a lot of appetite to listen to public health officials in the United States at the moment. So, the best way to get this under control is to do it before we have to turn to something like our viruses or rapid tests, which the government is also working on for humans. The best way to tamp it down, as I said, is to make sure it just doesn’t happen.

Zoe Rothblatt  04:04

And I guess the best way to tamp it down right now would be to monitor the areas that are infected and for people who work with infected animals should wear protective clothing and take the precautions to avoid getting sick and spreading it.

Steven Newmark  04:18

Exactly.

Zoe Rothblatt  04:19

So, I guess, you know, for just us general folk like not much to do right now, but wait and see.

Steven Newmark  04:26

Wait and see. Exactly, exactly. Fingers crossed and hope that the public health professionals are doing what they can to monitor it and keep it under control. And we’ll go from there.

Zoe Rothblatt  04:35

Well, I mean, in other infectious news, no surprise, we have another COVID variant.

Steven Newmark  04:41

Yep.

Zoe Rothblatt  04:41

Right now, KP.3 is dominant, it’s part of the JN.1 lineage. It’s the same old, deaths and hospitalizations have declined, but emergency room visits are on the rise. It doesn’t seem more dangerous than anything in the past. So, just like

Steven Newmark  04:58

Yeah.

Zoe Rothblatt  04:58

kind of the state of COVID remains the same.

Steven Newmark  05:01

Yeah, the state of COVID is that there’s COVID. It’s like saying the state of the flu is that there’s the flu, their state of the common cold is that there’s a common cold. And that’s just the way it’s going to be forever.

Zoe Rothblatt  05:11

Yeah. Well, I guess that just does lead us into our next bit of news, though, is learning about the current strains, I guess, influences our vaccine strategy. So, recently, the FDA panel recommended that the new COVID fall vaccines are designed for this JN.1 lineage.

Steven Newmark  05:30

Yeah, well that’s good. We’re staying on top of it, we will have the proper vaccine. Hopefully, for the fall, the CDC still needs to vote on the recommendations. But the evidence was presented during meetings showing that the JN.1 vaccines offer greater protection against the dominant variants than then currently available vaccine. So hopefully, we’ll be getting newer and better improved vaccines to fight the newer and the worse, if you will, variants that are out there.

Zoe Rothblatt  05:53

And also the FDA decision to do this is in line with what’s being recommended across the world. So in April, both the World Health Organization and European Medicines Agency recommended that their countries formulate their new vaccines to target this variant as well.

Steven Newmark  06:09

Yeah, in cooler news, if you will, vaccine news, there’s a COVID and flu shot that could be in our future. Moderna announced positive late stage trial results for it’s COVID Flu combined vaccine called mRNA 1083.

Zoe Rothblatt  06:21

Yeah, so this won’t be ready for this year’s flu season. But what really caught my eye about this one is that the results showed it improved immune response compared to those who got standalone shots. And these results were also true for people who are 65 and older. And I know many in our community have questions about how many doses will they need, because we don’t always allow immune response. And the same is true for a 65 plus age group, they may not mount as strong of an immune response as the standard young and healthy person. So, it’s pretty cool that the early results from this are showing, I guess not early results. They’re called late stage trial results are showing that it does mount a stronger response.

Steven Newmark  07:01

Yeah, that’s very good news. Good news for our arms, getting less injections, less pain. So, we’ll look forward to that in the future.

Zoe Rothblatt  07:08

Totally. Yeah, just think about it from like a public health standpoint, the idea that you could get two shots in one and reduce having to go back to

Steven Newmark  07:16

Yeah!

Zoe Rothblatt  07:16

the pharmacy, it just probably increases the amount of people that will be protected.

Steven Newmark  07:21

Totally. Which is great for everyone, right? Which is great for all of us.

Zoe Rothblatt  07:24

Yeah. Because not everyone can take off from work, get an appointment, or like the kids are in school. Like who knows what barrier you’re experiencing, to getting all of the shots and just making it as simple as possible is better for our community health.

Steven Newmark  07:38

Definitely! Simple is good. Other vaccine news, the FDA has expanded RSV vaccine approval to high risk adults, ages 50 to 59. So, this is for people who are at increased risk of getting severely sick.

Zoe Rothblatt  07:50

This shot was first approved in May, 2023. For people 60 and older, and we’re just excited to see it go to a different age group that could help protect people.

Steven Newmark  08:00

Yeah, absolutely. So, yeah, like you said, it was originally approved for folks, 60 and over now, it’d be 50 and over. So, that’ll be good and be helpful for those who need it.

Zoe Rothblatt  08:08

And like we mentioned above CDC is still to come in and vote on the recommendation. So, it’s not available just yet, but we could expect it to be soon.

Steven Newmark  08:17

Yeah, that’ll be interesting to see. In other news, earlier in June, there was a congressional subcommittee held hearings regarding I guess extensively regarding the origins of COVID-19 and included top officials from the National Institutes of Health along with Dr. Anthony Fauci. There was some acknowledgement some key parts of the public health guidance that their agencies promoted during the first year of the COVID-19 pandemic, were not necessarily backed up by solid science. Let’s be honest, it was a fast moving time and people had to react, but hauled before Congress, things got a little tricky to say the least.

Zoe Rothblatt  08:48

Yeah, so let’s break it down. Like what exactly were the parts that they said were not backed up by science?

Steven Newmark  08:54

So first and foremost, this subcommittee blamed Fauci for the six foot policy and Fauci responded saying that he was unaware of study supporting the six foot social distancing guidelines. He then clarified that it wasn’t based on randomized control trials. So, just a few things to say about that. First and foremost, the six foot guideline was not decided by Fauci, it was a decision by the CDC. The second thing is, this was not a policy that was decided out of thin air. This was a policy that was developed during the George W. Bush administration. It was part of their pandemic playbook in 2007. It was based on knowledge of the flu at the time dealing with the droplets and finding that six feet was appropriate for a pandemic that would involve transmission of droplets rather than aerosols, which is what COVID-19 was. So, given that COVID-19 was a novel virus, pulling from an old pandemic playbook probably was the simplest and easiest thing to do in that particular moment. In retrospect, six feet was not the perfect distance. Again, when you’re in the middle of an emergency, you’re not going to get everything right. That’s just how it is. But and in terms of a randomized control trial, you can’t get that in the middle of an emergency. We were literally losing 1000s of people per day, I think at its heights, I don’t want to get this wrong, I think it was 3500 people were dying, you got to move quickly. And you don’t always have the optimal information at your fingertips when that’s happening. That’s why you prepare in advance as much as possible to pull out the playbook. But you can only prepare for what you can prepare for, if that makes sense. And COVID-19 was novel.

Zoe Rothblatt  10:20

Totally. And just to highlight exactly what you’re saying there, like the main goal at the time was also just keeping people out of the hospital because the hospitals were so overwhelmed. And I feel like when we think about public health, a line that stands out in my head is like the greatest good for the greatest number of people. And like at that time, that’s what we thought like the six feet pulling from the playbook would be the greatest good for the greatest number of people. And it’s important to be critical and look back at what we did, but also understanding that we did what we did with the information that we had.

Steven Newmark  10:51

Absolutely, it is 100% reasonable to look back on decisions made during critical times. Everyone does that. Right. The military does that. What did we do during wartime that we could learn from so we can prepare for the next battle? Surgeons do that after our surgery, what goes well, and what doesn’t go well? What can we do to learn from that from next time? I’m an attorney, we used to do it all the time after a trial. What did we learn from this trial that we can do better next time. And that’s that is the right way to learn and move forward. So, it is totally reasonable to ask why certain decisions were made, what conversations were had, and what was the thinking at the time. If I could just take a moment and say that vilifying, attacking, and ripping apart public servants really is unhelpful in propelling people forward. It undermines trust in the system. It attacks people who work hard to make our lives healthier and better. And many public health leaders stepped up during the time of great uncertainty to try and protect people’s lives. And they had to make incredibly difficult decisions with often incomplete information. Mistakes were made, which is always going to be the case in any emergency, but the service was there. And it was there with the right intention. And you can live with those two truths that the public service, the public health goal was there and mistakes were made at the same time, and if we don’t acknowledge that we do risk losing even future public health leaders that will be there when we need them.

Zoe Rothblatt  12:07

Yeah. Also, I was just thinking about how, I don’t know, we could look back, but it’s probably been two years since we did that episode on Public Health Trust Eroding. And it just seems like, I don’t know, we’ve either been the same or gotten worse. And I’m just thinking about, like, what could we do to bolster that, especially when the news is coming out things like this, and it’s hard for the average person to just be critical and understand, like, what you’re saying about the six feet and pulling from old stuff, you know, maybe the average person isn’t going in and doing the research on that? And like, how could we help support that and build up trust?

Steven Newmark  12:41

That’s a great question and I don’t have an answer. There’s a precedent for such an approach would be the 911 commission. As an example, you look back and you say, what mistakes were made? What could be done differently? And what did we learn moving forward? It acknowledges your mistakes, which is important for public trust, but it also acknowledges who the experts are. However, as each month passes, the likelihood of something like that coming to fruition, is dissipating quickly, to say the least. So, beyond that, I don’t know the answer other than to just maybe time is really what it is. Hope beyond hope that we don’t have another pandemic anytime in the near future, and that we’re able to sort of use that intervening period of time to rebuild the trust over the years.

Zoe Rothblatt  13:22

And I guess there’s also this element of, you know, it’s easy to forget. And there’s still a lot of advocates in the community talking about this. But I guess like in March 2020, a lot of people in our community who live with autoimmune underlying conditions, including myself, were scared, like, if you walk outside, you’re gonna die.

Steven Newmark  13:39

Totally.

Zoe Rothblatt  13:39

And I don’t know, looking back, it’s like, I don’t think any of us in our community would have been upset that we were overly cautious because we all were acting overly cautious because we were so scared and didn’t know. And there’s like a difference between trusting and public health when you already have a health condition versus just being like a regular person that isn’t really focused on their well being so much.

Steven Newmark  14:01

Yeah, there’s a sense of certainly revisionism. I don’t think it was just folks with autoimmune conditions, I mean, a lot of people were scared in March of 2020, April of 2020, May of 2020. We didn’t know what this was. We didn’t have we had no treatments. We had no vaccine. We had no guidance.

Zoe Rothblatt  14:14

And no faith that if you needed care, you are going to get it, right.

Steven Newmark  14:17

Yup.

Zoe Rothblatt  14:17

Because the systems were so overwhelmed.

Steven Newmark  14:20

Yeah.

Zoe Rothblatt  14:20

Like, even seeking out care was scary.

Steven Newmark  14:23

It was a scary time. We were alone, we were told to stay inside. So, our brains weren’t a little bit fried. It was a really difficult time. I think that there’s some forgetfulness on the parts of folks of what we were dealing with. We haven’t had proper reckoning with that four years later of what it is that we dealt with. And to be fair, we’re going on about this subcommittee hearing and its effect on U.S. public health officials. The committee also spent a lot of time focused on the origin of COVID which is important to know as well and that is something we should try to find out because there is some question as to whether this came from a lab or whether it came from the Wuhan market and came from livestock. And if it came from the lab, that is a different scenario and certainly a different way of trying to prepare moving forward and in terms of safety. So, there is validity in learning about the origins and what we could do differently moving forward.

Zoe Rothblatt  15:10

For sure. And I guess like to wrap this up nicely in a bow to bring it to the top of our episode with the bird flu. Yeah, like, let’s learn about what we did and what response was effective versus not. And all apply that in today’s scenario and hope that this bird flu doesn’t spread.

Steven Newmark  15:26

Absolutely. I know, I hate to say like, our best bet is to keep our fingers crossed.

Zoe Rothblatt  15:30

Ha ha…toes too.

Steven Newmark  15:32

Yes. And like I said, just to buy ourselves, if nothing else, buy ourselves time to help build back up the credibility of the public health sector as we move forward. And, you know, go from there. And but we know we don’t have that issue with our listeners. And we’re grateful for that.

Zoe Rothblatt  15:45

Yes, thanks, listeners. On that note, that brings us to the close of our show. Steven, what did you learn today?

Steven Newmark  15:51

I guess about the combined COVID and flu shot. That’s exciting. I’m looking forward to that. I’ll see how my left arm deals with that.

Zoe Rothblatt  15:57

And actually, you know, it’s pretty good to put in your dominant arm because you’re going to move that more and it helps reduce the effects. And that’s me assuming you’re righty.

Steven Newmark  16:05

There it is.

Zoe Rothblatt  16:06

But also, I learned just from you about where we got the six feet from and pulling from old responses to new ones.

Steven Newmark  16:14

Well, we hope that you learned something, too. And before we go, we want everyone to check out all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  16:21

Well, everyone thanks for listening to the Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  16:35

I’m Steven Newmark. We’ll see you next time.

Narrator  16:40

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to the health advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Stephen Newmark, Chief of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.

Zoe Rothblatt  00:27

And today we’re joined by Liz Schumacher. Liz is a four time kidney transplant recipient and healthcare entrepreneur with over 30 years of professional health care experience in a wide range of fields including academic medicine, large healthcare system, community health, health insurance, pharma, health startups, law, clinical research, and medical specialty associations. Liz is also the founder and CEO of affinity strategies. And we had a great conversation about advocating for yourself navigating the healthcare system, and how she combines the personal patient experience with the professionals. So I’m excited to have a listen with you, Stephen.

Steven Newmark  01:04

Well, I can’t wait. Let’s get into it.

Zoe Rothblatt  01:06

Hi, Liz. Welcome to the Health Advocates.

Liz Schumacher  01:09

Thank you. I’m really happy to be here today.

Zoe Rothblatt  01:11

Awesome. Well, why don’t you start off by introducing yourself to our listeners?

01:15

Sure. Hi, there. My name is Liz Schumacher, and I am a four time kidney transplant recipient. I’ve been a patient living with chronic illness since I was 10 years old. So forty-two years, I’ve been a patient advocate.

Zoe Rothblatt  01:29

Well, I’m excited to talk to you today about your journey, and also I guess how you’ve grown, you know, part of that health journey into a business. But maybe let’s start from the beginning. Can you talk to us about the beginning of your journey and finding out you have a chronic illness and what that was like for you?

Liz Schumacher  01:47

I was diagnosed with Acute glomerulonephritis. I was quite young and wasn’t able to play my typical sports like I normally did. I just didn’t feel well. So my parents took me to the doctor. And after lots of tests, they ultimately realized or came to the conclusion, I should say, that I had acute glomerulonephritis. So my kidneys were basically failing, and nobody could determine what caused it. It was just something idiopathic. Within a few months, I was one of the youngest patients, the University of Wisconsin Hospital that had ever had with kidney disease that appeared like mine. So I quickly got referred to an academic hospital, University of Wisconsin saw a pediatric nephrologist, they tried lots of different treatments to try to make me healthy again. And unfortunately, none of the treatments worked. There was lots of experimental therapies and a variety of things, until we eventually decided that a kidney transplant was the best avenue for me during that time. I did plasmapheresis, kidney dialysis, all kinds of different IV treatments and such. And that was kind of the genesis of how it all started my patient journey.

Zoe Rothblatt  02:53

And what were you thinking during that time, when you were trying all of this stuff, what was going through your head?

Liz Schumacher  02:58

I really hoped that I was going to get healthy from all of it. I think that I really trusted my physicians and that my care team and I knew that they were really doing the very best for me, and I did everything I was supposed to do and that they recommended. I guess what I was thinking was sometimes it was scary. But I feel like when you’re in a position where you really have no choice, but to do what the smartest people around you think could potentially help save your life. I really felt I had no choice but to do what they suggested that they were going to make me healthy again.

Zoe Rothblatt  03:30

that’s really interesting to think about it as like you having no choice because I know you’re strong advocate for yourself and others. So like how did you start advocating despite feeling like there wasn’t a lot of choice in your health?

Liz Schumacher  03:43

I always felt I was part of my medical care team. I was. I shouldn’t say I felt I was. I was always included in all the decisions. So I was very fortunate in that while I was young, my medical team was very honest and forthright with what was going on what the symptoms were, what my options were. And they would say what do you want to do, Liz? How do you want to proceed? So even though I was a child, they really treated me as an equal partner to what was going to happen with me. They didn’t look up to my parents and say, What do you want to do? They would look to me and say, here’s what we think here’s the options. Here’s what we think you could potentially consider, what do you want to do? And I would ask a lot of questions. And they would always answer very honestly. They would educate me about what the illness issues were what was happening to me at any time and what the risks were and what they recommended that I would do. And then I would usually go along with what they said. And I’d ask questions. I give critical feedback. It really was kind of a team decision. And I felt like my voice was as important as anyone elses.

Zoe Rothblatt  04:44

I admire so much that you were able to do that from such a young age. Like I feel like it took me so long to figure out how to ask the right questions and be an active participant in care. It’s certainly not easy and it’s amazing that you had the team that was giving you the space to do that.

Liz Schumacher  05:01

Absolutely. I had a physician who was my primary nephrologist as a kid who would always be really honest with me and presented it in a very skillful way to not make me afraid, but make sure that I always understood what was happening. I never felt like there weren’t choices. And I never felt like anybody was going to do something to me without me agreeing to it first and understanding what it was before anything happened.

Zoe Rothblatt  05:27

And when we had talked before this podcast, you had told me about how you felt like some of your care was disjointed. Can you talk to us a little bit about that now? Like, what are some of the other providers you saw, and how did it become disjointed?

Liz Schumacher  05:42

I think that as I got older, I’ve been a, you know, a patient for over 40 years. So I’ve been able to watch how the healthcare system has changed as a patient. A lot of my friends will say we’re all patients when we talk about patient experience, but I think I just happen to be a really experienced patient who’s been around a long time. So I’m able to give a bit of a historical viewpoint on what I’ve noticed has changed from my perspective, as somebody who’s been really kind of a lifetime consumer of health care. And I think that what I’ve noticed is healthcare has become more and more sub specialized, and healthcare systems have changed. There’s so many experts to manage so many different aspects of your care at different times. And in some ways, I think that’s excellent, because you’re getting somebody who just has expertise in dealing with kidney disease, when your kidney level hits a certain point, you’re seeing this kind of person, when your kidney is working at a different level, you’re seeing a different person, when your transplants not working, you see one person when you transplant is working, you see another person. And then there’s all of the different team members, nurse who works with you, shortly before you have your transplant nurse who works with you, after your transplant to help manage you. So there’s a lot of different people who are highly specialized with different sort of time points in your medical journey. While I think a lot of that is really excellent, and as a business owner, myself, I see the scalability of that. So you’re really building expertise in certain places and points. I also think it can sometimes leave the patient wondering like, Okay, who do I go to, for what? Because as your medical situation is changing, when do you move from one caregiver to another caregiver who has certain expertise, and that is where I think being a really strong patient advocate and educated, informed patient, it really matters so that you can be paying attention to that, and you can be raising your hand and say, “Wait a minute, what about this? I think we’re missing this.” Just those natural things that fall through the cracks. Some of that feels a little disjointed to me as an adult. And I think it’s just a reflection of medicine changing, but that continuity of care throughout the whole process, from my vantage point, I am the only person who’s really managing that continuity and knows the details intimately.

Zoe Rothblatt  07:55

And did you ever get just like tired, like, I don’t know, like being a sick kid and advocating and trying to put together all this disjointed care?

Liz Schumacher  08:05

I think as a kid, it wasn’t, it didn’t feel as disjointed, quite frankly, as it does now as an adult. Because I think as a kid, there were fewer people taking care of me. So maybe a trip back in the day when I was younger, my transplant surgeon would have more of a say in the transplant medications, I’m taking post transplant, I would still see him in clinic, things like that. As an adult now, my transplant surgeon is seeing me right before transplant, giving me the transplant or doing the surgery. After, he’s following me for a while but pretty quickly, I’m then handed off to a transplant nephrologist. So all these different people managing certain aspects of where my healthcare is, I’m certain improves my long term outcomes. But the transitions and care from one point to the next is where I think you really have to pay close attention as a patient because I feel what I have experienced as an adult is there are nuances and things that just get missed as you have more people seeing you and taking care of you that you know. Or sometimes everyone might be so focused on your numbers and where you’re at and holding steady. But you have to really advocate for yourself on your symptoms and your side effects like, “Hey, I might be on dialysis right now. And my numbers are steady and my blood pressure steady and all these things that we want to keep steady medically, but I feel terrible and I’m nauseous and the nausea medications are not working. What else can we try?” Standing up for yourself to make sure that you’re maintaining your overall health as your health continues to change in the aspects that are outside of the things that your physician or nurses might do?

Zoe Rothblatt  09:36

Yeah, I think that’s excellent advice. It’s so interesting because like typically in the chronic illness journey, I guess outside of transplant, like most people have this one specialist or maybe two specialists if they have multiple chronic diseases. But like for each specialist they see it’s like really that one and once you liked them you kind of want to stick with them for life and hang on to them tight but for you it sounds like you don’t really get the opportunity to do that, to have that like one person that you know, is really looking over your case. And it just sounds like it’s challenging enough navigating your disease with that one person. And I can’t even imagine how challenging it is, like you’re saying, to just keep getting passed around and feel like just like so lost in the system of at all.

Liz Schumacher  10:19

I’m at a point now where I’m pretty stable. So I’m at one place now in my health care where I have one transplant nephrologist who really manages me and I have that continuity. But I would say I’m also, you know, in my 50s now, so there are other medical things, menopause, general healthcare issues, there are different complexities as you get older, that you keep layering on to your disease. So managing all of those things becomes, I think, more complex, and it becomes something you as a patient have to be paying attention to, and that you need to find the right people to help you with. So you don’t just become identified as somebody who just has a kidney transplant to be managed. You also have all these other things, maybe you have blood pressure issues, maybe you have gynecological issues. And I think some of that’s the really exciting thing about medicine is people are living longer and longer with chronic illnesses, but we’re still just normal people who need our normal health care to be treated. And that sometimes is something I think you really have to stand up for. So that you weren’t sacrificing, feeling great on a normal basis, like most people would be, you’re not just about your transplant or your disease, you’re also about all the other things, the side effects of the medicines, you take the other medical complexities that happen with age, those sorts of things, I think we’re in a different place now than we used to be with that as medicine advances.

Zoe Rothblatt  11:34

And we had talked a little bit about this in our previous conversation, especially through the lens of COVID, and just being so mindful. Of course, March, 2020 hit and everyone was mindful but there was an extra layer for people with chronic illness, and you were talking about as a transplant patient, how COVID really, really changed your life. Can you talk to us about that?

Liz Schumacher  11:55

For sure. You know, when COVID started, I own my own company, and we closed the office immediately. I think some of my employees didn’t totally want to do that before people really realized how serious it was that we closed our office pretty quickly. And I was isolated pretty much until September, October of this year, I would get out in the world and do some things I want to go to Costco I was going to go to certain time of day with my n95 mask I was certainly wasn’t going to get on an airplane, I gave up a lot of holidays with my family because not only was I immunocompromised as a fourth time transplant patient, I also my third kidney transplant was also rejecting so I was very sick. So I really had no choice but to really isolate and have my small bubble. And that was a really hard time as I know, it was for a lot of other people with really vulnerable health issues.

Zoe Rothblatt  12:44

And what do you think that like people could do to just be more understanding of a situation like that, like when you have a friend and you explain to them like, “hey, I need to isolate a bit more.” And let’s say they have a little bit of like a, “well why it’s not a problem anymore?” Like how I know so many in our community are struggling with having that conversation, like do you have any tips for helping people to understand?

Liz Schumacher  13:08

I would say the kind of tips that I would have, you just kind of have to rip off the band aid, I think. And I remember when COVID started, I talked to a few of my physicians and people I trusted and pretty quickly I looked at my husband and I said, “I feel like I’m gonna be the boy in the bubble,” like the 1980s, 70s movie with John Travolta. And that’s really what it was. And I remember saying to my husband like this is going to be survival of the fittest. I’m going to be at the bottom of the food chain on this, like, I’m gonna have to be so careful. It was very hard. And I feel like it changed a lot of my friendships and relationships. There are people who just kind of disappeared during that time to come back into my life now. And I try to be gracious with people and understand where they’re coming from their experience is very different than mine. But certainly, it was heartbreaking for me because I feel like there were some people who truly just didn’t get it. And those are the moments you have to say, “how can they get it, they’ve never had somebody in their life for themselves who are going through what I’m going through.” So in those cases, I just, you know, kind of step back a little bit. And I really put my energy and efforts into those who did understand and were really my support people and the people who got it, but it was very hard, I think.

Zoe Rothblatt  14:16

Yeah, well, you also said something that stuck with me about how there were some positives that came out of it like learning not to spread yourself too thin just because you are doing less and realizing that that’s giving you more energy.

Liz Schumacher  14:29

Absolutely. I would say that I really had no choice during COVID probably much like a lot of the folks listening to this podcast about what I couldn’t could do. It was very black and white. Sort of similar to when I was a kid like, “okay, it’s black and white, I’m sick, I have no choice and say no, I don’t want this disease” Like well, I have it so I have to navigate the best I can. I feel I did that as well with COVID and just saying alright, this is my reality. I have to accept this and really rely and lean into the resilience that I’ve developed throughout my life being a patient. And realize there’s going to be an other side to all of this. So my life motto is make lemonade out of lemons. So I thought, “Okay, make lemonade out of lemons like, this is my situation.” I’m going to become a better Baker. I’m gonna become a better cook. I’m going to do other things. I’m going to talk to my dad on video every single day, who is also isolated. I’m gonna put my energy and efforts into the relationships and the things that make me happy that are within my control.

Zoe Rothblatt  15:27

It’s so true. It’s almost like you had been training your whole life for that, right? Like learning to adapt with, like the body and health that you have, and figuring out how to still enjoy life while dealing with these challenging health situations.

Liz Schumacher  15:42

Yep, 100%. Being an entrepreneur, I grew up in a family of entrepreneurs, and owning my own business during COVID was actually such a blessing because I had the ability to control my schedule and where I worked, and I had a wonderful team supported me and I supported them. That really made a difference. And I think the resilience I’ve developed from being a patient, and frankly, being an entrepreneur and starting my own business, when I had my moments where I was feeling kind of sorry for myself, I’d say I can do this, like, I could do this, I’ve been through worst. So you know, one of the things I always rely on when I have to do something I don’t want to do is remembering what it was like to have a fistula in my arm when I was younger for dialysis. You know, three times a week having somebody put two big needles in your arm to dialyze I would go through a little mental exercise whenever I started dialysis. 123 Okay, the needle goes in. I would just kind of remind myself during the hard times, okay, you could do this. 123 Now do it. 123 make the phone call. 123 go out and walk. Like do what you have to do to get through.

Zoe Rothblatt  16:41

Wait, that’s so funny. Whenever I give myself my injections, I have like myself or a friend count down from five. Its just like the 54321 do the injection. There’s something about like counting yourself in. It’s like a little moment of hype and like, you have no choice you’re doing it because it’s gonna help you get better.

Liz Schumacher  17:00

100%. You have no choice. It’s like I sometimes think about, not to be grim, but okay, at some point, it’s like when you know, you’re going to die. That’s going to happen to all this at some point. And if you know what’s going to be happening, there’s nothing you can do to control this. So at a certain point, you’ll learn how to accept and be resilient about it and find peace. And it’s the same as being diagnosed with a serious disease, accept it, make the best of it. Or anything hard in life.

Zoe Rothblatt  17:27

Yeah, finding your piece is such an important piece of the patient journey. But going back to what you said, you mentioned, you’re an entrepreneur. Can you tell us about the business that you started?

Liz Schumacher  17:37

I started a company called affinity strategies 10 years ago, and we manage a medical specialty associations and patient communities. Really medical and patient communities, who need organizational management, structure, fundraising, organization, engagement, all of that sort of thing. And I started the business because I had worked for multiple medical associations professionally. I was former legal counsel at the American Medical Association. I had been a healthcare lobbyist for many years and felt that having worked at associations for so long, I felt that I could bring a different perspective and way of doing things, so I started my own company. And it’s been very successful. And it’s a pleasure because I get to work with academic physicians and academic medical people every day, who are the people I really kind of grew up with. So they’re my people.

Zoe Rothblatt  18:25

Well, congratulations on your business. And I think you said 10 years, that’s pretty awesome to look back at a decade. How do you bring your patient experience into what you do?

Liz Schumacher  18:35

I would say that when I’m pitching clients, I don’t hide it, I talk about it. In fact, I’ve recently rebranded my business to say the patient is our purpose. We have a new website coming out that’s going to reflect a lot of that because really, the reason medical associations exist or patient coalition’s are most healthcare, any kind of health care community really, is to improve patient outcomes and patient care. At the end of the day, it’s really quite simple in my mind. So I’ve really narrowed in on what that focus is. And when I’m meeting with new potential new clients, I embrace it, and I talk about it because I think it shows that we authentically, really care about what we’re doing. And we aren’t just there to be doing a job. We’re also there to be helping the people that we work with advance medicine and advance research. So I embrace it, I talk about it. And I think it inspires some of my clients. I think it also makes them understand that I understand the world they’re coming from, and the difficult kind of things that they have to see and deal with every day, having been a patient who’s been on the other side of what they do every day in their jobs. So it builds an immediate connection, I think.

Zoe Rothblatt  19:40

Yeah, I was about to ask like, what the response is like when you start sharing. Do you find people are surprised, or it’s mostly just like you’re saying like, “Oh, it’s so nice to have someone who gets it?”

Liz Schumacher  19:51

I think that a lot of people really appreciate it. I think a lot of the academic medicine physicians I work with who are doing research and spending so much their lives trying to find cures for all different kinds of diseases. Often they’re really blown away like, “whoa, you’ve had four transplants? Oh my god, really?” Like they’re kind of sometimes in shock. I think there’s some clients who are like, “wow, that’s great, I know something else about her, but can she really execute on delivering what we need for our organization?” I’ve never been greeted with anything negative. I don’t think it’s ever really been used against me in any bad way. When I was sick, my clients were amazing. They would send me texts, notes, they were on my contact list when my husband would let people know how things were going. So they were really pretty incredible.

Zoe Rothblatt  20:36

That’s amazing to hear. Like, I’m just smiling, listening to you. Like, I feel like the patient community, and just like health community can be so welcoming and supportive. And while it can be scary to start sharing your story, I’ve noticed that like, once you do, first of all, like it gets easier every time. And people typically know someone or themselves have some sort of condition that they’re like, ready to listen and be there with you.

Liz Schumacher  21:02

100%. And I think having a medical condition, I mean, you understand, I understand. We probably subconsciously overperformed because we are so resilient. So to us things that might really get in the way of some people wanting to continue, we just keep like moving ahead. So when sometimes I think it’s a little sad, but it works in my favor that when the going gets tough, like that’s when I know how to manage crisis. I know how to manage difficult situations. I just move ahead and like, get it done. And I think that skill and coping mechanism I learned when I was young has proven to be an incredibly helpful life skill for me, that not everybody quite frankly has. And it’s just innate, when you’ve had to do it your whole life.

Zoe Rothblatt  21:43

Yeah, it’s true. It’s like you have to keep your head up and keep going. Because sometimes, like if you just slip into it and think about it all, like you’ll just slip deep down. And it’s like, we’re talking about this before, like coaching yourself through it. Like having others coach you through and like keeping your head up and keep going forward.

Liz Schumacher  22:02

100%.

Zoe Rothblatt  22:03

Well, Liz, this has been a really great discussion. And the last thing I want to ask you is what advice do you have for other patients?

Liz Schumacher  22:09

I do want to talk a little bit about healthcare sustainability. It’s one of the things that I’m really interested in at this point in my life, as I continue to pay attention to what’s going on in the world. And I would say I think all patients need to be paying attention to sustainability and what’s going on with Earth. I think some people might think that’s kind of crazy. But I think that we really do need to. If COVID didn’t teach us that crazy things can happen out of the blue, we need to start learning that. And you know, there are increasing numbers of infectious, rare infectious diseases that are popping up, all you need to do is like do a Google search, and you’ll see it every day and all different kinds of news sources. So I think patients need to be paying attention to not just their own medical condition, but also what’s happening on the horizon and how some of these new types of infectious diseases and things that are happening could potentially affect our health down the road. So I really want to make a plug for people to be thinking about sustainability and how they’re living and how they’re using and what they’re doing. So that we can also protect the Earth the best that we can just like we protect our own health. Because, if the Earth isn’t healthy, we’re going to have more diseases, we’re going to have more things that are going to be happening that affect us as vulnerable patients. So I’m really putting more time and energy into the next phase of my career on sustainable health care as well.

Zoe Rothblatt  23:28

And yeah, can you tell me a little bit more about that? Like how you specifically will be focusing on a health sustainability?

Liz Schumacher  23:35

I’m working with a team of others, physician, attorney, design thinking experts, to form a nonprofit called Greenwell, where we will be working together to improve healthcare sustainability. The nonprofit will be very focused on patients and health care providers and in improving our experiences. And there will be more information coming as we continue to grow the nonprofit, but I’m very excited about it. Because my hope is that people like us don’t have a life ahead of us of more COVIDs, and scary things that come out of the blue. I want to be as prepared, and I want patients to be as prepared and ready to advocate for themselves in their health. And regarding any advice for patients, I have so much advice for patients. I think it’s just delving into learning about your disease. I think it’s not being afraid to speak up, you know, the whole imposter syndrome thing people talk about. Your voice is the most important at any table where you’re discussing yourself. So doing research, asking questions, but making sure that you have a healthcare team who you really, really trust and are really, really smart, and listen to you and treat you as an equal so that it really is a discussion about your treatment options in your future together. And if you have any weird gut feeling like your voice is not being included, then you need to speak up or maybe you need to find another team but I think that most often it’s just speaking up and asking questions and being taken seriously and engaging because I think I’m here 40 Some years later with four kidney transplants and thriving and doing well because I have spoken up and I have demanded certain things for my medical care. And I’ve asked questions, and I’ve been comfortable taking risks. So I think just speak up, ask questions, learn, understand. Also, if you’re having symptoms or things from different conditions and treatments you’re getting, ask for help. If you have chronic headaches from a medication or GI issues, say, “Hey, I know that my health is improved my diseases improved from these medicines, but what can we do about the side effects?” Like, demand and ask for the best so that you can live as, quote, “normal life” that you can that is sufficient for you.

Zoe Rothblatt  25:35

Amen to that. It’s your body, so ask the questions, because you’re the one that’s going to be living with the symptoms or symptom free, right?

25:45

Absolutely. 100% you have to. And don’t be afraid. And if you get some kickback from somebody, just keep pushing it. That’s the time to be resilient and think in your mind, “What’s the worst thing I’ve been through medically?” Okay. Like I think about a dials to dialysis needles going in my arm. Okay. 123 Just say it, just do it. Force yourself to do it and say it.

Zoe Rothblatt  26:05

Well, thank you so much, Liz, for joining us sharing your story and about the work that you’re doing.

Liz Schumacher  26:10

Thank you for having me. I hope I didn’t say too much. But it’s a topic I’m so excited about. And I’m putting more energy and effort into this third act of my career. Helping patients is really what I think I’m meant to do. So I thank you for letting me join you today.

Steven Newmark  26:25

Wow Zoe, that was a really great interview.

Zoe Rothblatt  26:26

Yeah, it was great to talk to Liz. I just appreciate learning from her about how she blends her patient experience with her professional life and how she’s just starting to share her story more broadly. And it’s going to help so many people.

Steven Newmark  26:39

Yeah, totally. I’m gonna cut you off by just diving right into my learning. Just to hear from someone like Liz, who dealt with so much at such a young age, and how she was able to take these experiences and really turn them into to be a force for positive good is really just inspiring. Absolutely. Well, we hope that you learned something, too, and before we go, we definitely want to encourage everyone to check out all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  27:04

Well, everyone thanks for listening to the health advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, please give us a rating, write a review, and definitely hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  27:18

I’m Stephen Newmark. We’ll see you next time.

Narrator  27:24

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to the health advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, head of policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:21

Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. So today, in anticipation of world IBD day, which is happening on Sunday, May 19, we’ll be interviewing a gastroenterologist in Arizona who devotes unfortunately far too much of his time to helping his patients navigate the system and make sure that they get on the proper therapies. Dr. Brad Pasternak will talk to us a little bit about some of the advocacy that he does on behalf of his patients.

Zoe Rothblatt  00:51

Great. I’m excited to listen.

Steven Newmark  00:52

Let’s get into it. All right, Dr. Pasternak, thank you so much for taking your time. It’s very much appreciated. We love all advocates here on the health advocates, but there’s something extra special that doctors are willing to take time from their busy schedules to travel to Washington DC, travel to their state houses, to help make lives better for their patients. And it’s not just travel, I know, it’s hours and hours of educating yourself on the complexities of step therapy, non medical switching, and how laws and policies can help patients. So thank you for being with us today, Dr. Pasternak.

Dr. Pasternak  01:23

Thank you for inviting me. It’s always nice to have a platform to try to reach more people about what we’re doing.

Steven Newmark  01:29

Yeah, excellent. So, let’s just start like, tell us a little bit about yourself. How did you get into gastroenterology as a specialty? How did your journey take you to Phoenix, Arizona?

Dr. Pasternak  01:37

Yeah, that’s always a great question. I’ve always known that I wanted to be a physician ever since I was young. And I’ve always loved working with kids just as a camp counselor, as a lifeguard. Just growing up my whole life, I’ve just interacted with children really well. And I got personally diagnosed with ulcerative colitis when I was in college. And so I immediately became fascinated with just autoimmune conditions, inflammatory bowel disease. More immunology and science behind it, and the fact that with all the research going on, we still don’t know what causes it, there’s no cure for it. So like I knew I wanted to do GI just based on my own personal experience. And then you know, when you think about that, it’s either dealing with no offence, old people and poop problems, or kids and poop problems. And I think there’s a big difference when you’re dealing with that.

Steven Newmark  02:31

Just to be clear, so I’m the old man with the gastro problems, right?

Dr. Pasternak  02:36

Yeah, or anyone else listening, or anyone else listening? So I clearly was heading towards the pediatric GI realm. Phoenix was completely unexpected. I did my fellowship training at Cincinnati Children’s and was at that time more geared toward research career, translational research, I was working in a really high power lab, and doing completely protected research time. It was just was one of those mornings that you wake up and question like, what am I doing? I think it was 7am. And I was literally giving a mouse an enema to give it colitis. And I just sat there saying, This is not why I went into medicine. I mean, it’s not that it’s unimportant, just from my personal interest. I love working with people and just sort of had a reevaluation at that time. And I met with my Division Chief Bill Balistreri, who’s a very well known name in the pediatric GI world. And he told me about this group that really fit my personality, and they were building a brand new large hospital and I came here in a February to visit to interview and left just snow icicles, gray skies, to 65 degrees and perfect weather, and I’ve been here ever since. You know, and they’ve given me the opportunity to build a robust IBD program and have given me a lot of support. And so yeah, really, it was just sort of very lucky and managed to find a group that was able to help mentor me and support. So here I am, 15 years.

Steven Newmark  04:08

Wow, that’s, that’s fantastic. Well, what led you to advocacy specifically?

Dr. Pasternak  04:12

That actually has been quite recent, I think more within the past five years. You know, when I think back to when I started practicing, the medical world was not the way it is today. It’s completely changed. And it’s been essentially taken over by dealing with payers and policies and prior auth and appeals, and it’s a completely different animal. And really, it’s come from wanting to do the best for my patients and fight for them. I was fortunate enough to have a patient who worked in health care policy for a large company and yeah, then I would call on her whenever there were issues or things that I just felt were wrong. I would call on her ask what her understanding was and ask for some, some help with certain situations and often gripe to her. She ultimately started to involve me in some of her projects. She involved me and I’ve written some stuff about step therapy reform here in Arizona. And we had a patient once, I remember, who I had written it was a teenager who was not growing, who was diagnosed with Crohn’s, moderate Crohn’s. Then I wrote for a biologic, which is the standard of care for that particular scenario. And they denied it stating that the patient had to fail three months of steroids before approving a biologic, which in actuality is malpractice. I mean, you’re not going to give a child corticosteroids stop their growth further and make them fail for three months. I mean, that’s just setting them up for a world of adverse effects. So she actually connected me with the CMO of that particular health plan. And then we set up a meeting and the meeting was 20 minutes, the CMO completely agreed with my concerns and not only overturned the denial, but then incorporated me in their new approval process, a new protocol for approving that particular drug. And we haven’t had an issue since. So that was my first experience of like, really making a difference, locally.

Steven Newmark  06:05

Wow!

Dr. Pasternak  06:05

And then, the stories go on and on. I’ve got multiple stories of scenarios of denials, that I just got more and more involved in advocacy, getting involved with NASPGHAN, which is our pediatric GI foundation. I’ve been working really closely with Camille Bonta, who’s our Washington advocate, and other KOLs in this space, because we’re all going through it. You know, I’ve been to Capitol Hill a couple of times. And I also started utilizing social media, which believe it or not, is quite a powerful tool in the advocacy realm, so.

Steven Newmark  06:41

Yeah, I’ve heard. Wait, I just want to take a pause for our listeners. The term KOL stands for key opinion leader, and it’s often used to, you know, correct me if I have this sort of on the right path, Dr. Pasternak. KOL sort of refers to doctors who are yeah, I guess key opinion leaders right. In this sentence, people who help influence opinions in the field?

Dr. Pasternak  07:01

Yeah, I would say they’re the experts in the field where, when you go to conferences, or you read papers, like they’re the ones that you sort of follow and listen to as far as how they approach different diseases.

Steven Newmark  07:13

Right. So, I’m very curious, can you tell us what it’s like when you’re traveling to, let’s use Washington. What is it like when you’re meeting with elected officials, or staff and policymakers in Washington or even at the local level as a doctor?

Dr. Pasternak  07:26

Yeah.

Steven Newmark  07:26

Because we talk a lot about what it’s like as patients to meet with elected officials, but what is it like as a doctor?

Dr. Pasternak  07:31

It’s interesting. So, like I said, I’ve been there twice to Capitol Hill. The first time I actually went representing an organization called the infusion access foundation.

Steven Newmark  07:42

Okay, yeah, we work with them.

Dr. Pasternak  07:44

Yeah. So Alicia Baron, who’s one of their people, used to work for the Crohn’s and Colitis Foundation, and I met her through a couple mutual contacts. I joined a group of advocates that consisted of patients, providers, infusion center administrators, and then we met with our local representative. And at that time, we were talking about prior authorization reform. What was interesting, it’s almost like how medicine is structured, where, you end up meeting with staffers, mostly.

Steven Newmark  08:13

Right, right, right, of course.

Dr. Pasternak  08:14

So, you know, I’m meeting these like, immediate post college graduates or law school graduates and, you know, very young, and they would relay the messages to the policymaker. And they, they would discuss various points of contention or support with them. And it’s a little bit, I’m not sure the right word, but you’d like ultimately, as a physician, and a person who’s, you know, I’m a professor, I’m a physician, I run a program, it’d be nice if I had a seat at the table with the policymaker, but, because I’m taking time out of my day, in my practice to come down there.

Steven Newmark  08:47

Sure.

Dr. Pasternak  08:48

I think the bottom line is, it’s a hard road.

Steven Newmark  08:51

Yeah.

Dr. Pasternak  08:51

And, especially on a federal level, once things are going through, and there’s legislation and you go and speak, it takes a lot to get through to them to convince them that you have a point. But the process also, the process takes a really long time to move the needle, which is frustrating.

Steven Newmark  09:03

Yeah, I’m really glad you said that only because it’s something that I say all the time when I’m with patients, particularly in Washington. It takes a long time.f The example I always give is the Civil Rights Act, is, did not start in 1964. When it was initially passed, it takes years, there was actually a civil rights act in 1957. And, of course, much pressure, that took a long, long time. And actually, in the realm of history, that probably was considered lightning speed on such an important topic, when it comes to the world of step therapy. And what we’re talking about, it’s much harder. The other thing, just to bounce off what you were saying, is, you meet with these staffers, or sometimes you’re lucky enough to meet with the actual elected official. And legislating policy, it’s not like, you can’t fit what you want onto a bumper sticker, it’s so easy to say lower drug prices. Boom. Like let’s do that, save, pro-patients. And then you create a legislation, and it has all these unintended consequences that weren’t thought about and people who are actually in the field like you, like patients, like me, that are just not thought about when the legislation is being drafted because it’s sometimes about, hey, it fit on a bumper sticker. It sounds great. Lower prices, whatever. Let me just, just to change tracks for a second. I know we talk all the time on the health advocates about the effects of various policies on patients. Particularly, you know, some insurance policies, and you were describing some of the steps that are put in the way and forcing a patient to be on a particular medication for three months. It’s absurd. But can you talk about the effects that these policies have on doctors? I mean, how do you even have time to deal with all this kind of stuff?

Dr. Pasternak  10:37

Yeah, I think that’s a great point. People don’t think about necessarily what it does to not even just doctors. I would lump the medical profession as a whole. As I mentioned, over the past, like 15 years, there’s been a total shift in this field. And it went from a lot more autonomy and shared decision making to literally any drug I write for my patients, with the exception of very few, requires a prior off. Which immediately leads to delay, no matter what. The second that process starts, there’s delay. And it’s, it’s nonsensical. It’s not based on evidence. So for me, you know, once that process starts, it’s the prior off, the denial, the appeal, then the repeat denial, then there’s a peer to peer. And for physicians, for instance, I have peer to peers almost on a daily basis where…

Steven Newmark  11:29

Hold on, Hold on, Hold on. Can you just explain to our audience what, what a peer to peer is?

Dr. Pasternak  11:32

It’s funny that they call it a peer to peer. That’s the biggest misnomer. I mean, peer to me implies friend, but no. So a peer to peer is a way, so if a medication is denied and there’s an appeal, it’s a way for the physician or nurse practitioner or to have a conversation with one of the medical directors of the insurance company to essentially state their case and argue why it should be approved. And it takes time. And peer to peer does not mean that if I’m writing for a Remicade for my IBD patient, that the person on the other end is a pediatric gastroenterologist, I could be talking to a geriatric gynecologist, I mean, honestly, he could be the furthest thing from my field. Where, we have this conversation so many times they say, “Well, you know, explain why you think this is worthwhile. And then your reasoning and well, you know, the literature better than I do. And I’m going to, yeah, that makes sense. I’ll approve it.” It’s a complete time suck that at the end of the day, you could look at the literature, I mean, almost 80% plus of prior auth that go through this process get overturned. If you’re someone who knows the literature and you know, that steps, you know, evidence based medicine, I mean, I never, I don’t want to say never, but I would say I’m probably batting greater than 95% in terms of my peer to peers getting things approved. So the peer to peers are scheduled. They’ll say, Oh, they’ll call you between one and three on Wednesday, with no regard to your schedule, right? And so I have patients there where I have to leave they say oh, excuse me I’ve been waiting for this call from a medical director I have to leave the room excused myself take the five second call to ultimately tell them, like they have that information, tell them what what I believe is get the the appeal overturned and then go back to my patients. Sometimes they don’t call, they’re always calling from some unknown number. And these days, our phones are getting attacked by possible spam. So you never want to answer these calls. And then, beyond that, they require, often, before even getting a peer to peer, you have to send something called a letter of medical necessity. So you have to put in writing exactly why you want to get this medication or get this study, get this test for your patient. That takes a lot of time. And then, lastly, staffing. I mean, we have staff now hired that is just dedicated to this process. They’re the ones that call, find out, you know, what’s on formulary, deal with the prior off, set up the peer to peers. We have to hire people directly to handle this backlog, to try to remove some of it from the physician. I recently did a survey nationally to ask about just medical providers and the effect that it’s having on them as far as time to approval administration time. I mean, it’s significant how much it affects everyone, and I’m sure is one of the causes of burnout, I mean, without a doubt.

Steven Newmark  14:30

Yeah. Oh my gosh, I mean, I can imagine. I mean, as a patient, I’ve dealt with insurance companies, and I’ve had my battles, and I’ve had to put things in writing. And I find it to be exhausting to do it for myself. To try and be a doctor, or I’m actually meeting, I have other, let’s just say other things going on, I can’t even imagine. So I’ll say it again, just thank you for all that you do. I know how time consuming, how tough it must be. Let me ask you something more positive. Can you tell us you know, you’ve been practicing for two decades-ish, in the two decades range, I think it’s fair to say. Can you tell us some of the differences in in patient outcomes today, versus when you first started practicing?

Dr. Pasternak  15:05

Yeah, absolutely. I mean, it’s it’s night and day, even from when I was diagnosed with ulcerative colitis, probably when you were diagnosed with Crohn’s. At that time, for me, it was steroids, anti inflammatories, and that was there for a while. Then some of these newer immune modifying drugs came out with unfortunately, lots of side effects. But now there is just this surge of newer therapies that are more effective, that are safer, and they changed the game. I mean, in the past, it was the goal was always make the child, make the patient feel better, right, let’s improve their symptoms, let’s improve their labs. But now we’ve gotten to a point where we want to actually heal the colon. I mean, we want to be able to go in and show that everything is completely normal, which we didn’t have the opportunity to do with the older drugs. And obviously, our goal is to avoid surgery. Avoid surgery and avoid steroids, I mean, that’s our ultimate goal. I look at there was a an algorithm for patients with acute severe colitis, for instance. They typically will, these kids will come into the hospital, they’ll have terrible disease, and the algorithm was published in like 2017, so not very long ago, and it called for steroids, a trial of Remicade, maybe a second trial, Remicade. And then colon comes out. I mean, it’s just sort of that’s the pathway. Where now, we’ve got newer drugs, we’ve got medications that work very quickly, and ultimately, we need to already relook at that pathway to say, I mean, I think we’ve outgrown it. And I think we have the possibility of using newer medications to prevent colectomy. So yeah, patient outcomes today are significantly better with safer medication.

Steven Newmark  16:48

Yeah, it’s a better world. One thing I always say to patients is, excuse my language, it’s sucks to be a patient. It sucks having this condition. But if there’s any time on earth to have contracted it, this is where you want to be, things are getting better each day, and newer and newer therapies are coming out, so be positive. So let me ask you, what is one takeaway that you would like to impart on other medical providers on patients and on caregivers.

Dr. Pasternak  17:09

I would say that, as we mentioned it takes a long time for things to change, and there’s no quick fix. Things are not changing tomorrow. The more people get involved, the higher the likelihood that change will happen quicker. And that, I guess from a physician perspective, the goal of a lot of these payers and these processes is to almost wear us out and give up and not necessarily put in the effort put a patient on a cheaper, less effective medication to not have to deal with going through the process. That is not the answer. I would say just I always say what if it was your child, treat every patient as if it’s your child and fight as hard as you would for your own child as you would your patient and don’t give up. From a patient perspective, I mean, I applaud you for writing letters and being involved. A lot of patients don’t know what to do, and don’t really have the guidance. As far as the approach, I always tell patients like this is going to be a two pronged attack. I will fight them on my side, you fight them on your side, and let’s see if we can get them to change their decision. So having patients really just take initiative and fight for themselves. Contacting their HR department, if it’s, you know, a plan through their employer, that’s always helpful. Contacting the state insurance commissioner, that always helps. There are people here to help us and try to disallow some of these practices. Social media, I think is great. You definitely need to be careful. Because obviously, you know, especially if you represent a company, an employer, or an institution, you know, your name gets tied to whoever you work for. And so be careful in regards to that. But at the end of the day, I would say, just keep fighting it. Even if you’re not sure, the next step, there are groups like yours, there are advocacy groups that exist all over, and they’re always looking for people to help.

Steven Newmark  19:04

Yeah, that’s fantastic. I’m just going to add one more from what you said earlier, I liked the idea that you said, that you got involved because of a patient of yours, who happen to work in health advocacy, but everyone listening to this podcast, works in health advocacy, whether they know it or not. So you’re an advocate. And that includes talking to your doctors about what you’re going through. And you could bring in more folks like Dr. Pasternak to help our causes. And that’s fantastic.

Dr. Pasternak  19:27

And just briefly, because I didn’t mention anything of what I’ve done locally, that actually moves a lot quicker than federally.

Steven Newmark  19:33

Good point.

Dr. Pasternak  19:33

So I ended up getting contacted by the Arizona Medical Association, they’ve got an advocacy division. And he reached out to me, because of, he heard about my work in all of this, step therapy, non medical switching, et cetera, and asked if I wanted to testify on a local Bill involved with something called non medical switching, which is a payer dictating a switch of a medication to a cheaper medication or a biosimilar, despite the patient doing extremely well on their current therapy. And so I actually, I got to testify at the local house. And they actually were very grateful, not only the Medical Association, but the legislators were grateful to hear my perspective. And so, I don’t think they get a lot of physicians that actually testify. I know we, we’re busy, but it can make a big difference.

Steven Newmark  20:23

Yeah, no, that’s a really great point. Let me end our discussion here by asking, can we make a promise that we can meet up someday in Washington, or perhaps even at the State House in Phoenix, work together to advocate.

Dr. Pasternak  20:33

Absolutely. I think before the podcast, we were just catching up, and my comment was that we’ve got so many people working on the same thing for whether it’s rheumatoid arthritis, or psoriasis, or I mean, whatever, all, lupus, I mean, all these chronic disease states have their own advocacy groups. And really, I think we all need to work together, because the concept, the fundamental issues are the same. And it’s preventing delay, preventing prior authorization, or having some reform there, not preventing it, but having some reform, depth therapy, it’s all the same fundamental concepts, it just in each disease state. And it’s something where a group like yours that work in multiple disease states.

Steven Newmark  21:17

Yeah!

Dr. Pasternak  21:17

That’s where this needs to go.

Steven Newmark  21:19

Yeah, no, absolutely. Well, this has been fantastic. You know, again, we’re so grateful for your time. Thank you, Dr. Pasternak. And we look forward to continuing this dialogue, as I said, perhaps in Washington or in Phoenix, we’ll link arms together.

Dr. Pasternak  21:31

Absolutely. Thank you for having me.

Steven Newmark  21:35

Thank you.

Zoe Rothblatt  21:35

Wow, Steven, that was a really great interview. And it just reminds me of like the power that doctors have to advocate for patients and really be a partner in care.

Steven Newmark  21:44

Yeah, no, absolutely. It is so unfortunate that doctors have to spend so much of their time doing advocacy and fighting for their patients and dealing with this prior authorization, all the other stuff that Dr. Pasternak was talking about. I mean, doctors really should be you know, practicing medicine, but such is the world we live in, right, Zoe?

Zoe Rothblatt  22:01

Exactly, and we’re grateful for doctors like Dr. Pasternak who work hard to fight against these egregious policies.

Steven Newmark  22:08

Absolutely. Well, I’m gonna cut you off and say that was my learning, the difficulties that are faced by doctors on their end when fighting for us and how grateful I am to have great doctors out there like Dr. Pasternak.

Zoe Rothblatt  22:17

Ditto.

Steven Newmark  22:18

Alright, well, we hope that you’ve learned something too. And before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen

Zoe Rothblatt  22:26

Well, everyone thanks for listening to the health advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating, write a review on Apple podcasts, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  22:41

I’m Steven Newmark. I’ll see you next time.

Zoe Rothblatt  22:43

And Happy World Diabetes Day.

Narrator  22:49

Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Head of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:20

Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. Today, we’re going to talk to a special guest New York City Council Member Shahana Hanif about her life as a lupus patient and how her condition informs her work as a member of the city council. But first we’ll talk about some news. And actually, I want to start by acknowledging Earth Day which took place this week. So we’re a few days late, but I had an interesting learning this week from my favorite epidemiologist, Katelyn Jetelina, and from her I learned that roughly nine percent of all plant life on Earth has been used in traditional medicine to treat and prevent disease. So, go Earth! Plants have gifted us with important medications for the treatment of cancer, pain, aspirin and morphine, for example, infection, diabetes, heart disease, and more. Thank you, Earth.

Zoe Rothblatt  01:06

That’s really cool. Thank you, Earth. We know that going outside, and like walking outside, spending time with fresh air and sun is your health. But I had no idea that so much of Earth plants were helping us in forming medications.

Steven Newmark  01:20

Yes, thank you Earth for all you do. And specifically, we’re gonna say thank you for your medicine. Okay, let’s get into it. What’s going on?

Zoe Rothblatt  01:26

So biologic therapies have a potential use in COVID-19 treatments.

Steven Newmark  01:32

I’m not surprised. They’re great medicines. So the traditionally used to biologic therapies, of course, focuses on managing autoimmune diseases. There’s ongoing research into the potential role in treating complications arising from COVID-19.

Zoe Rothblatt  01:44

And the rationale behind this is basically similar, the overactive immune response similar to what you have in an autoimmune disease that COVID in severe cases can trigger a hyper-inflammatory response. So the body’s immune system not only attacks the virus, but also healthy tissues causing like a cascade of inflammation.

Steven Newmark  02:04

Yeah.

Zoe Rothblatt  02:05

And that biologics can specifically target this inflammation.

Steven Newmark  02:08

Totally makes sense to me, sort of, I guess, I’m not a doctor or scientist, but it totally makes sense, just intuitively. So I’m happy to see that I’m happy to see even more uses for some of these great therapies. Well, now let’s get into our interview with the council member.

Zoe Rothblatt  02:23

Great. I’m excited to hear.

Steven Newmark  02:24

Well, let’s start by introducing our guest today, New York City Council member Shahana Hanif, representative of the 39th Council District in Brooklyn. Councilmember Hanif was born and raised in her district and was diagnosed with lupus at age seventeen. She’s the first Muslim woman elected to the New York City Council and the first woman to represent the 39th district. Thank you for joining us, Councilmember. We’re excited to talk to you today.

Councilmember Hanif  02:46

Thank you so much for having me. I’m super honored to be your guest.

Steven Newmark  02:50

Yeah, excellent. And we’re here in part because on May 1, we’re going to do a Lupus Awareness Day in New York City. That we’ll be co hosting, spearheaded by an event at NYU Medical Center. So we’re excited for that. And we’re excited to raise awareness for lupus here in New York.

Councilmember Hanif  03:05

Absolutely.

Steven Newmark  03:06

So let’s jump right in at the beginning of your patient journey, if you don’t mind. What was it like growing up in Brooklyn and then at age seventeen, getting a life changing diagnosis?

Councilmember Hanif  03:15

So I was born and raised in Brooklyn, in a neighborhood called Kensington, which I now proudly represent, it is home to a thriving Bangladeshi working class immigrant community, which during my tenure as council member, I’ve been able to rename as little Bangladesh. It is the largest Bangladeshi enclave in Brooklyn. And so I grew up with parents who worked very hard. We never missed a day of school and I got to see what being a daughter of immigrants means in a community that had very little access to city services. And leading up to my diagnosis, we didn’t have a routine health care center that we visited. And so leading up to my diagnosis at seventeen, I was experiencing a myriad of issues and I had debilitating migraines, toothaches, swelling in both of my feet. And I had essentially seen these as individual issues and not part of a larger pattern of what could be an illness and so I was taking off the counter medications like Tylenol and would one day feel better the next again, there was another piece of symptom that was exasperated and so it wasn’t until my mother had seen my swollen feet that she was like, we have to go to the emergency room and that was our go to anytime we were sick. We would just run to the emergency room.

Steven Newmark  03:29

Yeah.

Councilmember Hanif  03:45

And that visit changed my entire life. We were there waiting for over twelve hours. And at the time it was Ramadan. So my mom and I were both fasting, we broke our fast at the hospital. And then when I got called in blood pressure was examined, urine tested, and both protein in my urine and the blood pressure were so high that they were like we need to keep you. There’s something that we need to investigate and find out what’s causing this rupture. And I remember feeling very lost and very confused. My mother also just in a frenzy, we were both very scared and very anxious. And I had never witnessed anything like this in my life. My parents had never with me and my two other siblings experienced anything this heartbreaking and this life changing.

Steven Newmark  05:45

I’m just curious, you were so young, and you were seventeen. Had you heard of lupus before? Did you have any idea what lupus was?

Councilmember Hanif  05:52

So interestingly, I had heard of lupus. But I was surprised when when I received the diagnosis, because at that moment, I couldn’t recall where I had heard it. But I had heard it on America’s Next Top Model.

Steven Newmark  06:05

Oh.

Councilmember Hanif  06:06

One of the earlier seasons and a one of their contestants who had gotten to the final round or the top three in one season, Mercedes had a flare. She was experiencing flare, and she on live television shared that she wasn’t feeling well, she was feeling sick. And so I recall that moment of onscreen, just vulnerability. So I’ve definitely heard of it. But then it also made me think about the fact that outside of that particular moment, I had no other example of anybody with chronic illness, or anybody openly sharing that they’re not feeling well outside of it being specifically older people, that older people are sort of relegated to illness and sickness and disabilities, but then a whole community of people are sort of getting by without talking about being sick or feeling unwell, or just the sheer stigma around these conversations. So I was curious as to why that was. And I think that served for me as a catalyst to wanting to do something different, to be very open about what I was experiencing, particularly because I belong to a close knit community. And that was what served to me as a catalyst for change. And for me to be an advocate both for myself, but all others who have been alienated or abandoned by illness.

Steven Newmark  07:31

Yeah, first of all, I just want to say so much of this resonates not just with me, I know it resonates with our patient community, the idea of needing a community and being a part of a community is a really big deal. So I’m curious how you went from the emergency room, not having a regular doctor, I presume by now you do have a regular doctor that you see.

Councilmember Hanif  07:50

I do.

Steven Newmark  07:51

So how did you get connected to the right places, and what were some of the challenges that you had to deal with to find the right doctor?

Councilmember Hanif  07:57

Sure, so the hospital I first turn to the Emergency Center was not the hospital that I received my initial years of treatment. In fact, that first hospital did not have a pediatric rheumatologist. So they were very much incapable of really making sure that I was receiving adequate and efficient treatment. However, they were able to move me out to a hospital and my birth hospital actually, I received care from Maimonides and was under such tremendously compassionate, dignified care with a rheumatologist, a nephrologist, and endocrinologist. I mean, I had a whole team of pediatric.

Steven Newmark  08:38

A lot of “ologists.”

Councilmember Hanif  08:39

That’s right. But initially, it was very tough because I had not navigated health care and hospitals in this way. And coming from a household where sickness was not seen with much importance, or was seen as well this is going to pass. So let’s just keep on keeping on. This was the first time that I was forced to take a pause, forced to take a pause and navigate what is a very nebulous system to tackle and not just for our immigrant or limited English proficient communities. But even as somebody who speaks English can read and write in English, this is a tough system to navigate. And I was also on top of everything uninsured, I did not have health insurance, and it just all felt overwhelming. And so once I moved on to my Maimonides, I mean, slowly, the treatment process became a bit more open to me. However, I felt that if I did not at the same time talk about the hurdles, I would have a much harder time I wanted to be able to connect with other people. I wanted to be able to connect with other women, which is why I was writing at the same time I had a blog called Shahana with Lupus, and I was keeping a diary, a public diary of sorts to share out instances that I felt were unjust. I had applied for Access-A-Ride, our city’s paratransit service and had been rejected and it bothered me so much. It infuriated me that somebody like me who now needs to go back to school, or go to doctor’s appointments, or just hang out that everything was at stake because of this rejection by Access-A-Ride. How would I get around the city, it felt inhumane and cruel that the lack of this opportunity meant that I could not leave my house that I would have to pay hundreds of dollars in cab services to get around the city. So, I really channeled my activism and my anger into activism rather to be able to talk about this.

Steven Newmark  10:47

We love that here on The Health Advocates.

Councilmember Hanif  10:49

Yeah, that’s right. So I use writing as a tool to one get closer with my friends. Because this was also within our age group. I was as a seventeen year old, unfamiliar, unfamiliar territory. And I didn’t want this diagnosis, I didn’t want lupus to be a secret. I didn’t want this to be an issue that I deal with at home with my parents. I wanted this to be a facet of my life, and for my friends to be involved in care.

Steven Newmark  11:17

Yeah. Let me ask you, you’re an elected official. How has that come up on the political trail, if you will? How does it come up day to day when you’re in the city council itself, affecting your positions, perhaps on certain pieces of legislation, but first talk about the politics of it and like managing were on the campaign trail? What was it like?

Councilmember Hanif  11:33

So, I have been very open about lupus since age seventeen, from the onset of this public blog to my first job as a tenant organizer and fighting to be able to work from home. Lupus has impacted every part of my life. When I decided to go to Brooklyn College, I chose the school because the B11 bus took me straight to my hospital, I knew that being close to home would mean that if my parents ever needed to pick me up, they could do that within 10-15 minutes. So everything revolves around care. However, our city is not built that way. Our city is not built in a way where everyone can just choose well, because the bus is here, I should go to the school, I was fortunate to be able to maneuver my life around buses and access to care. But that’s not in totality how our city is built, people have to go out of their communities to go to the hospital of their care or of their choice, right? Or the elevators may not be connected to the transit system where your Hospital is located. There’s so many challenges. And so for my run for city council, speaking about lupus was foundational, it’s a part of my story. It’s how I’ve navigated living in the city, whether it was my fight for equitable transit system, I fought really closely with my neighbors for the Seventh Avenue F G station elevator, which is right by the Methodist Hospital. And that was a huge campaign and it just recently got built under my tenure. And so anybody coming into Seventh Avenue in Park Slope has an elevator access, which is tremendous news for us. And this was years of organizing, to language accessibility issues within our broader city agencies making sure that immigrant working class families have access and feel empowered to receive health care. So on the campaign trail, I talked about lupus, I shared the impacts of what it looks like to not have adequate health care access, and particularly I ran during the height in the wake of COVID. And so this was not unfamiliar, my speaking about lupus was not an unfamiliar or rare conversation, because everybody in the city was impacted by COVID, if not directly, they had a family member they were taking care of, or they knew that they had to take time off to take care of a family member impacted by long COVID. So this conversation was and continues to be mainstream. And I think it’s very important for us to be able to talk about illness and chronic illness and also the mental health aspects very openly and candidly. Through my time in the council, I’ve been open with my colleagues as well and may is officially Lupus Awareness Month in our city and I’m looking forward to again celebrating it this year. But the way in which I’ve looked at disability, chronic illness, mental health issues is by fighting for guaranteed housing, by fighting for education equity, by ensuring that we’re improving on remote work access, and making it so that no one feels abandoned by the city and lupus has been a launching pad and foundational to every single piece of legislation that I fight for.

Steven Newmark  14:54

I do want to ask one last question, but before I did.

Councilmember Hanif  14:56

Yeah.

Steven Newmark  14:57

I mean just last week. I mean, this is not ten years ago, I was on the phone fighting for a particular therapy and dealing with my insurer. And after a few hours on the call, I was exhausted. And when I hung up, I actually said, well, you just created another health advocate or something like that another patient advocate. And as they hung up, I realized like, wait a minute, first of all, I already am a freaking advocate.

Councilmember Hanif  15:16

Yeah.

Steven Newmark  15:17

But I was like, you know what? Now I’m even more pumped up. And the whole idea what you were talking about Access-A-Ride and when things excuse my language, but when they align to screw over patients when the system is not set up in a way to help patients, but there are impediments in the way, the one positive, the one bright shining thing is that it does create more advocates to fight. So that’s good. So last question, councilwoman, how do you use your position on the city council to raise awareness about chronic illnesses like lupus and advocate for improved patient care, you spoke about the improved patient care a little bit, but?

Councilmember Hanif  15:46

Yeah, I first and foremost, I’m very honest about my own life. I am somebody who continues to be a part of the healthcare system, I am impacted. I just had my hip replaced at the onset of my term in 2022, I had to get a revision. And so the Hospital for Special Surgery is my lifeline. I have all of my doctors and care there. And to be able to be a legislator who needed to get a full hip replacement, again, is something that was so new to my colleagues. And you know, I’m 33 years old. This is a story that requires to be told, I want to make sure that the fight for health care access and improvement is not just something that is theoretical, that our constituents get to see that we have champions in elected office who are also impacted by illness. And they have navigated the tumultuous healthcare system and are fighting for better care. I also participated in lobby days I go to DC for lupus advocacy, we need more money in research, we need more money for medication that is without side effects. And we need a city that is built for us to be able to age in place. And so the age in place piece is particularly important for me, no one should need to move away from their homes simply because they have a set of stairs, we should be able to age in place and create housing and infrastructure that allows us to get around the city without any impediments. And so every part of my fight for just budget and for improved legislation for transformative legislation is through the lens of disability justice. And that is important for me. And because I speak about it, it has certainly influenced my colleagues to think about all pieces of legislation in this way, we must, the city should be built for all of us, not just for some of us.

Zoe Rothblatt  17:43

Well, this has been great. Thank you so much, Councilmember for joining us today. And if we don’t see you in New York City, if not, perhaps we’ll see each other or we can join up in Washington the next time you’re there with some of our patient advocates as well as we continue the fight.

Councilmember Hanif  17:57

Thank you so much, Steven, this was such a wonderful conversation.

Steven Newmark  18:01

Yeah, thank you.

Zoe Rothblatt  18:04

Well, Steven, that was a really great interview. It’s fun listening to you have a conversation with the council member and just really reminded me of the importance of raising awareness about lupus and having conversations with elected officials and bringing the community together.

Steven Newmark  18:18

Totally. I learned something, something we already knew. But elected officials, there are people just like us isn’t that something isn’t that in one of the magazines? They’re just like us. Celebrities too, are just like us. They have diseases and ailments that we all have to deal with and go through their lives. And the more folks I think of public prominence, you have conditions and speak out about living life with those conditions, the better we can be as advocates, and we hope that you learn something too. And before we go, we want to encourage everyone to check out all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  18:46

Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating, write a review, and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  19:04

I’m Steven Newmark. We’ll see you next time.

Narrator  19:10

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Steven Newmark  00:08

Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Director of Community Outreach at GHLF.

Steven Newmark  00:20

Our goal is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life.

Zoe Rothblatt  00:22

And today, we’re joined by Shonta Chambers with the Patient Advocate Foundation. I had a really wonderful conversation with her about the work she does at Patient Advocate Foundation to improve health equity and connecting patients with resources for all things that go into their health. We talked a lot about health disparities and how things like transportation and your housing impact your health. So Steven, I’m excited for you to listen.

Steven Newmark  00:49

Yeah, well, let’s get into it.

Zoe Rothblatt  00:51

Welcome, Shonta.

Shonta Chambers  00:52

Thank you so much, Zoe for having me. Excited for today’s conversation.

Zoe Rothblatt  00:57

Me too. Why don’t you start off by introducing yourself to our listeners?

Shonta Chambers  01:00

Hello, I am Shonta Chambers, and I’m the Executive Vice President for Health Equity and Community Engagement for Patient Advocate Foundation. I am also a mother of two amazing young men, and I’m a caregiver for my mother who is living with progressive multiple sclerosis, and my father who is actually a stroke survivor. So I get to be an advocate in my profession, and as well as being an advocate in my personal life. So. that’s a little bit about me.

Zoe Rothblatt  01:28

And can you tell us more about your work with Patient Advocate Foundation and how you advocate on behalf of patients there?

Shonta Chambers  01:35

So, Patient Advocate Foundation as an organization, we’re really at the nexus of addressing access and affordability issues for persons living with chronic and complex health conditions across all 50 states. And that is really bringing to the forefront those various social and financial drivers of health and health inequities that people are living with every day. So it was really about looking at insurance and helping those who may be uninsured, identify and enroll in a health insurance plan or for those persons who may be insured and have a course of care that has been denied, working with them to actually file an appeal against that denial. Or for those folks who are just really needing financial resources to address everyday costs of living expenses, like utilities, rent, mortgage, even groceries, and transportation, to even things such as helping folks actually apply for or social security disability. So it’s really addressing everything across the spectrum of health and across a spectrum of health care, but more so focus on those social and financial aspects and less of the actual clinical aspects.

Zoe Rothblatt  02:40

And can you tell me more about that, how those social and economic aspects impact your health? I have a background in public health in policy and management and we always talk about social determinants of health and it might surprise people to learn how much these other factors like you’re saying outside the clinical impact your health, and can you tell me about like more about that, and what you’ve seen in the patients you work with.

Shonta Chambers  03:04

So there was a study done some time ago, and it really outlined the fact that 80 percent of one’s health outcomes are actually attributed to the social drivers of health or the social drivers of health inequity. And that includes things such as where they live, their economic status, and all of these factors, like you pointed out that are all non-clinical base. And so it’s really about understanding when someone is uninsured, how that hinders their ability to access and adhere to care. If someone is underinsured, that hinders their ability to access and adhere to care. If someone lives in a food desert and let’s say that there’s a course of care that requires them to have a healthy diet, that impacts their overall quality of life. Let’s say that someone lives someplace where it’s a transportation desert, and they don’t have adequate transportation, then it also hinders their ability to be able to access care, because if someone has to travel two or three hours to get to doctor’s appointments, and back and forth, etc, how that does have an overall impact on their overall health. And also for those people who may be living in dilapidated housing or those folks who may be housing insecure. I think it’s so important for us to understand that what homelessness looked like several years ago, which was basically we always have this vision of homelessness, of people living on the street, that now we have a new definition of homelessness, we have new characteristics of homelessness. And right now what we’re seeing is a lot of people who are living in these long term care lodges or these log extended stay hotels, and these individuals are actually classified as being homeless. So these are all of those other factors that we really have to think about, because they have a significant impact. That is why it’s so critically important that we have active conversations around these things, but also make sure that we’re having these policy discussions around these things as well.

Shonta Chambers  03:07

And what sort of policies or resources do you promote as a foundation? Like if a patient calls you up and let’s use your example of transportation that they need help, can you walk us through, like how you would help that patient and what you offer?

Shonta Chambers  05:15