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

Absolutely. So let me start by saying that we have a cadre of amazing case managers. And they are some of the most passionate and hardworking individuals that I have ever encountered, not just our case management team, but also our team that works across our entire enterprise from our copay assistance program to our financial assistance program. And so let’s take this example, let’s say that we do have a patient that comes to us, and they’ve identified transportation as a barrier. Let me also point out that is so critically important that the patients that are coming to us never come to us because they just have one challenge. So that patient who’s coming to us may be coming to us because they have an immediate transportation barrier. But because our case managers have been in this space for so long, they know that once they began to ask more questions, they’re going to find that there are more layers to this onion. So not only does that person have a transportation problem, they may have some difficulty paying for their utilities, they also may be experiencing difficulty paying for their medication. So on that transportation situation, what that case manager is going to do is look to see if he or she can actually find resources at the community level or someplace else to really be able to respond to that transportation need that that person may have. The beauty of them doing this further exploration around the needs of a patient is, let’s say that they can’t find a viable transportation resource. But they do know that this person is also having some challenges paying for medication or actually paying for their utilities. But in those two lanes, they may be able to find a viable resource. So what they may do is find that viable resource to address that medication cost issue, or that utility issue in the hopes that that will free up some additional resources within the home that now this patient can direct towards addressing that transportation barrier. So they are really some geniuses in this space and really navigating. So it’s like if they can’t find a solution to one thing, maybe if they can find a solution to something else, then it can help work with that patient or that caregiver who may be calling us on a patient’s behalf to reallocate those resources to address the need that they may be calling us about. But that is only once they’ve exhausted all possible options. And that’s what they do every single day.

Zoe Rothblatt  07:34

And I think what you guys do is so incredible, because it’s just so exhausting being a patient. And like you’re mentioning, there’s so many aspects to focus on, and to know that someone can call you guys up and get that help. And maybe you’re asking questions that they haven’t even thought about themselves, because you’re just so overwhelmed with the chronic illness. And it’s amazing that you can take away that burden from a patient and be able to support them in a time of need.

Shonta Chambers  08:00

Absolutely, we actually just completed a survey to really look at administrative burden. And those results, of course, can be found at our Patient Insight Institute. And it was just really amazing to elevate the urgency of minimizing the administrative burden that patients encounter as well as their caregivers, because it can sometimes take weeks and months and sometimes years to bring resolution to some of the challenges that they are experiencing. And I think it’s the reality that we have to understand the urgency of now. So when patients or caregivers who are coming to us on their behalf are seeking assistance or seeking help, they’re needing it like now, not three months from now, not six months from now, and not a year from now. And if I can call out when we talk about patients who are living with rare diseases, we’re talking about that disease odyssey even being much longer. So it’s just critically important for us to also understand the enormity of the administrative burden that is also on the shoulders of patients. So they’re trying to balance the administrative requirement to get assistance for things while at the same time they’re also trying to manage their condition. And that’s a balancing act that I don’t think any of us desire.

Zoe Rothblatt  09:13

And maybe this is too personal. But do you ever feel that burnout was doing it every day in personal and professional life?

Shonta Chambers  09:21

Absolutely. I’ll use my mom for an example. So my mom is bed bound as a result of her MS and there is a program in the state where I live that allows persons who would qualify for skilled nursing care to be able to receive the care in their home. So one of our case managers told me about this program back in 2022. August of 2022 was actually when we started this process. We are now sitting in March of 2024. And I am still trying to get her the first day of in home service. And so I consider myself to be somewhat intelligent on most days, right. And so here I am trying to navigate the system, and I’m having these significant delays. And I do this, or I’m in the space with people who do this every single day. And I don’t think we sometimes realize the emotional and mental toll that this can even take on a patient or their caregiver or whomever, we’re talking about 2022. And here we are in 2024. And fortunately, I am able enough to be able to care for my mom. But what if I wasn’t? And then on the other side of that, I still have to work every single day. And so what about those folks who don’t have that type of social support system? What do they do? And oftentimes, you know, what they do they just give up. And that’s not right. That’s just completely unfair.

Zoe Rothblatt  10:45

Totally. And I think a huge part of this, too, is the health literacy. So because of your work, you know, all the right questions to ask, and you know what words to use, and you’re still confronted with the barriers and the delay. And I’m just thinking about all the people that don’t do this every day in their life, and are just so confused when they pick up the phone and really just don’t know what to do. Not by any fault of their own but just because you’re learning as you go in a lot of these healthcare scenarios.

Shonta Chambers  11:13

That’s the beauty of what I appreciate about how PAF as an organization approaches our engagement with patients. And so going back to our case managers, whenever there is a moment to do a conference call with a patient or their caregiver, when we’re trying to bring an issue to resolution, we use that as a teachable moment. So they use a lot of three way calling so that that patient or that caregiver can hear the question that they’re posing, they can also hear how they’re responding to questions that are being asked of them. And we use those as teachable moments so that if individuals ever find themselves in these situations, again, they at least can draw back to what they heard in terms of how our case manager may have posed a question or how they may have actually responded to a question. Basic literacy in our country is still a challenge and so when you add on top of that health literacy, it just becomes a greater challenge. And so being able to use these audible opportunities, as teachable moments is also a way how we try to really build self advocacy among our patient population.

Zoe Rothblatt  12:17

And what are some of the other common like challenges or lack of resources that you see in your work?

Shonta Chambers  12:23

Housing.

Zoe Rothblatt  12:24

Yeah.

Shonta Chambers  12:24

Housing has been a huge challenge in terms of affordability with everything that has been happening, housing has really risen to the top for so many individuals. And housing is critically important for a number of reasons. Imagine the anxiety associated with not know that you have safe and secure and stable housing, especially if you’re someone living with a chronic or complex health condition. So housing would be one of those things. And then again, for those who are still able to maintain their housing, everything that goes along with cost of living, so cost of living continues to be one of those major issues that we hear from our patients all the time. And I’ll round that out and say costs associated with care whether that’s direct pharmacologic costs, or costs associated with having to travel to care, co-pays that are associated with their care, those would probably be the three, like I said, housing, of course, the ability to afford cost of living related expenses, and costs of care related expenses. That is what we hear most often from the patients that we serve.

Zoe Rothblatt  13:32

Yeah, it’s so hard, because like a lot of just what you would call healthy people are dealing with these challenges. And then when you’re managing a chronic disease, which I always say is like a full time job, it really requires so much. And then when you physically don’t feel well, and you should want to like curl up in bed, but you don’t have a bed, you don’t have access to reliable comfort to take care of yourself. Like it feels like it should be a basic human right.

Shonta Chambers  13:57

Right, so if I go back to that example, when I think about the new face of homelessness, when I said people are now living in these long term care, hotels, these kind of quad living environments, and probably you’re talking about a space that has one of those little cubic refrigerators. And at that, for those of us who are fortunate enough to be able to go to college, they were in our dorm rooms, right until it was enough to maybe keep maybe some water and maybe one or two snacks. But for lets if you have someone that is on a therapy of any type that needs to be refrigerated, or someone who again needs a healthy diet to accompany their therapy, how much of a healthy diet can you store in one of those itty bitty tiny cubic size refrigerators. And then for those who have to store medication, you’re having to balance how much of that space is used to store your medication, as well as how much of that is used to store your food and things of that nature. And so when we talk about it in that context, we cannot ignore the relationship with health and housing as we think about what it looks like for people as they move forward.

Zoe Rothblatt  15:02

I never even thought about that just the attention to detail and how you move through the day. And as something as simple as the size of a refrigerator could dictate your health and how often you have to get up and go to the store. And just the privilege there to even visit the store every day and trying to maintain a job. And it’s just so layered when you really dig deep.

Shonta Chambers  15:23

And Zoe that’s making the assumption that there was a store that you can get up and go to right. If we think about so many of our communities, the major market is Pinky’s convenience store. And the closest thing to a fresh fruit and vegetable, may be that banana that’s been sitting on the counter all week. And so when you start peeling this onion back a little bit more, you say, yeah, I may be in a long term housing situation where my frequency to need to go to the grocery store is great. But guess what, I don’t even have transportation to be able to get to the store because there is not one in walking distance of where I’m having to live. So becomes this amplifying effect. And then think about really the emotional toll that that has on one. As you said, sometimes you’re so physically exhausted from trying to manage your condition, and all of those things that you just want to curl up. Well, so many people can’t curl up because they realize if they curl up that the family members that are depending upon them, they lose as well.

Zoe Rothblatt  16:25

So what can we do to help? You know, that’s such a broad question, but are there policies we can advocate for? And like the individual level, how can we support our community? What suggestions do you have?

Shonta Chambers  16:38

One of the things and I’ve taken this learning environment, this learning opportunity with this with my mom and saying how can I make this easier for the next person. So I’ve been documenting just my own experience through this with A, a plan to give back or give guidance back to my local legislator. This is my story. So I think the degree all of us have a story, whether we are a patient, or whether we’re caregiver, we have a story. And it’s important for us to tell that story to the individuals that we are electing at a local level, as well as at a state level, because they are the face of us as constituents. And so it’s critically important that they know when they’re making decisions around health care when they’re making decisions around transportation infrastructure, when they’re making decisions around housing, when they’re making decisions around the state funded safety net programs, they need to understand that there are real people at the end of these types of decisions. There are real families at the end of these types of decisions. And we can’t just say that to them one time, we can’t just say that to them in a election period or the election time of year, we need to be constantly using our voice and creating an echo chamber. Because just like we know, I know my mom and her living with her MS, I know my dad and him being a stroke survivor. But when we walk out of our door, we know other people in our community, whether there are seniors in our community that are experiencing challenges when they’re only trying to live the best quality of life possible. So we have a responsibility and an opportunity to be that echo chamber to raise these voices to raise these issues so that they don’t fade away. What tends to happen is around election time, everyone wants to talk about these things. But once the polls close and the final ballots are cast, then all of these conversations become mute, but they don’t become mute in the lives of persons living with chronic and complex health conditions. They live with this 365 days a year. There are no off days, there are no primaries, there are no final votes. This is their life every single day. And we have to make sure that these experiences don’t fade to black, that they continue to be vibrant in the forefront of how we deliver health care every single day.

Zoe Rothblatt  19:04

Well said, keep the story alive and remember that it’s real people. It’s really powerful. And sometimes I say we’re all just one chronic disease away from getting a chronic disease like you never know. It could be you. I live with two chronic diseases and it’s a turning point in your life and everybody has issues they care about and there’s a lot of issues we talked about today that I think it should resonate with most people whether it’s housing, the transportation, the healthcare, the being a patient yourself, caregiving, health literacy, regular literacy, like there’s so much here that you can have a personal connection to.

Shonta Chambers  19:41

Absolutely.

Zoe Rothblatt  19:42

Shonta, the final question I want to ask you is what advice do you have for other caregivers?

Shonta Chambers  19:47

Oh, wow. What advice do I have for other caregivers? Two things. I would say first, I would have to express my appreciation for all the fellow caregivers out there because they are such unsung heroes because no one sees their tears or hears their cry. And oftentimes it is in that space of us being with ourselves that we allow that to take place. Because we don’t want to do in front of the person that we’re caring for, because they already are dealing with the emotions of knowing that we’re having to render care for them, but at the same time is to humanity of who we are, because it does get exhausting. And if you are a caregiver who also may be living with a chronic or complex health condition yourself it’s only amplified. And so for me, my advice to caregivers is don’t forget to take those moments for yourself to just reset, reframe, and then re-engage and know that it’s okay to say that you are tired. And it’s also okay to say not today. It’s okay to say that today, I’m not going to deal with that one thing, not today, because you’re only as good as your strength. And it’s alright to take those moments to restore your own mental health. So find out what that means for you and be okay with resting in that place.

Zoe Rothblatt  21:17

That’s really beautiful. I think it’s similar to as a patient, your whole identity doesn’t have to be a patient. And I’m sensing that from what you’re saying, as a caregiver, it doesn’t have to be your whole identity. And your advice to take time for yourself helps you maintain that that you’re like a person first and a caregiver second.

Shonta Chambers  21:36

So what do we always say you can’t pour from an empty cup?

Zoe Rothblatt  21:39

Yes.

Shonta Chambers  21:40

So as a caregiver, it is so important to make sure that you have someone, or something, or some space that fills your cup so that your cup doesn’t run empty.

Zoe Rothblatt  21:52

Well, thank you so much for joining. And I guess my final final question is where can our listeners like find you, find Patient Advocate Foundation, we’ll drop some links in the show notes, but let us know.

Shonta Chambers  22:01

So of course, you can find Patient Advocate foundation at www.patientadvocate.org, or you can reach us toll free at 800-532-5274. You can find me as well as Patient Advocate on LinkedIn. Of course, I’m @ShontaChambers at LinkedIn. And there are a plethora of resources on our website, we have a phenomenal national financial resource directory on our website, which is really a catalogue of all the resources across the country that our case managers have tapped into. Because we realize sometimes it’s two in the morning when you realize you need a resource. And you can’t call someone, we wanted to make sure that there was a space that patients could go to, caregivers, or even those who are in communities that are helping to support patients. So you can find a variety of resources there on our website.

Zoe Rothblatt  22:02

Thank you so much for joining us. And for all the work you do. I’m excited to follow along your journey and keep seeing how it goes.

Shonta Chambers  22:19

Oh, well, I’m not tired yet. I keep my sleeves rolled up because this is truly a marathon and not a sprint. And so and I’m ready for it, so I stay hydrated, and stay rested. Because there’s a beauty in this work called advocacy, although I wish I didn’t have to do it. But I think we all have a purpose and I think that this is part of my purpose.

Zoe Rothblatt  23:27

Amazing. Well, thank you so so much.

Shonta Chambers  23:29

Thank you so much, Zoe.

Steven Newmark  23:32

Wow. Well, that was great, Zoe. It was so interesting to hear from Shonta.

Zoe Rothblatt  23:35

Yeah, that was really great. I really appreciated her talking about caregiver support and just the burnout there and the need to think about the other players in the healthcare field. How about you what you learn?

Steven Newmark  23:47

Yeah, speaking about learning that was a big learning for me just the idea of what caregivers go through. I’ve seen it on a personal level. How emotionally draining it can be an exhausting to be a caregiver, and our hats are off here at GHLF. We never neglect caregivers. At least I hope we don’t. So we salute them. 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  24:13

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

Steven Newmark  24:26

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

Narrator  24:31

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

Steven Newmark  00:00

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  00:09

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

Steven Newmark  00:13

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  00:21

And today we have special guests joining us. We’re joined by singer, entertainer extraordinaire Cyndi Lauper and culinary chef Michelle Bernstein, to talk about their journey with psoriasis and psoriatic arthritis. So recently, the two of them have joined forces to bridge the worlds of music and cuisine to deliver a powerful message of hope and empowerment for patients living with psoriatic disease.

Steven Newmark  00:45

They’re using their platform to share their personal journeys and insights to the millions of individuals living with chronic autoimmune conditions.

Zoe Rothblatt  00:52

So Cyndi and Michelle, welcome to The Health Advocates. Thanks for joining us.

Cyndi Lauper  00:57

Thank you.

Chef Michelle Bernstein  00:58

Thank you so much.

Steven Newmark  00:59

Yeah, we’re big fans and we’re very excited for you to join us and share what you’re doing to help patients like yourselves around the country.

Zoe Rothblatt  01:06

Yeah, we’re really excited that you’re using your platform to you know, talk about your patient journeys and we’ll get into that today. And, you know, part of our work is, Steven and I both live with chronic illness and you know, we’re patients ourselves, and we chat with patients all the time, and we’re just looking forward to learning more from you today about your journey and spreading awareness. So yeah, thank you.

Cyndi Lauper  01:29

So you have psoriasis also?

Zoe Rothblatt  01:32

I have inflammatory arthritis and Crohn’s disease. So a little different, but I can understand aspects of the journey.

Chef Michelle Bernstein  01:40

That’s a tough one.

Steven Newmark  01:41

I have, gosh, I have it all. I have inflammatory arthritis. I have IBD. And I have psoriasis. So I’ve got the triple crown.

Chef Michelle Bernstein  01:50

Yeah, you do.

Cyndi Lauper  01:52

I’m sorry.

Steven Newmark  01:53

No, it’s okay. It’s okay. Everything, I’m actually, I consider myself to be very lucky because it’s all under control. And I know how to take care of myself. I know how to get the best therapies and work with doctors, and I live a pretty good life. So I’m actually very lucky.

Chef Michelle Bernstein  02:09

that’s wonderful. That’s wonderful. As are we.

Steven Newmark  02:13

Yeah. Well, that’s great to hear. So let’s get into it. First question for Cyndi. Can you describe the initial moments when you first noticed symptoms of psoriasis on your scalp while on tour and how did you initially react to it?

Cyndi Lauper  02:26

Well, I was on vacation.

Steven Newmark  02:28

Oh, I apologize.

Cyndi Lauper  02:29

After the tour. No, it was just after the tour, and I was in Spain. And I thought, you know, because I had a kid, I thought I had like bugs from his helmet. He played hockey. So I thought oh, you know, because they always have that, hey, hey, somebody has bugs, you know, whatever. And, and then when it didn’t go away, and I went to the doctor right away, and he said, oh, that’s not bugs, that’s psoriasis. And I said really, and he gave me some shampoo and for a while was okay and then it started to get worse. And then it got even worse. And then it was even more worse than it was. And I eventually was covered head to toe with psoriasis. I had two different forms, one plaque psoriasis, and the other the red spots on my skin and it just kind of everything kind of just blended into one. So it’s really bad. And I let it go too long and that’s why I’m here talking to you. Because I realized that a lot of people have psoriasis on their skin and don’t really do anything about it, but get some cream or live with it. And you know, I waited five years before I went to a doctor.

Steven Newmark  04:01

Yeah.

Cyndi Lauper  04:01

And there are some things that can permanently change when you don’t see a doctor right away and there are doctors that specialize just in psoriasis. It wasn’t like it wasn’t going to see a doctor, but I didn’t go and see a doctor that just did psoriasis. You know, because when you have these skin things, if if it’s not recognized it goes untreated or misdiagnosed or treated. You know, for instance, nowadays doctors are learning more and more and more about this disease. And if you find a specialist, they can help you before it’s an inflammatory thing, anautoimmune inflammatory disease and what’s on the outside you don’t know what’s going on on the inside. So you need to advocate for yourself, you need to find a doctor who actually knows about what you think you might have, and recognize it, whether you have white skin, or dark skin, or whatever color skin because now, years ago, they only recognized it on white skin. Now they recognize it because they study the disease. And, there are many options for you that you don’t have to live in pain. Like you guys, you’ve seen a doctor, and you can live your best life as opposed to not taking care of yourself, you know. And, even if you think you’re but you’re going to ignore it, it’s not going to go away, because not really a rash. It’s more than that and what happens on the outside, there’s stuff other stuff that could happen on the inside. And that’s why I’m here with Chef Michelle, because chef Michelle, you can take it from there.

Zoe Rothblatt  06:11

Yeah, so turning to you, Chef Michelle, like, you know, Cyndi’s describing that she didn’t see a doctor for some time, what was it like for you in the beginning of your journey and receiving the diagnosis of psoriatic arthritis?

Chef Michelle Bernstein  06:25

You know, something I had never heard of. And I don’t know if you know anything about the life of the chef, but it’s not an easy one. It’s extremely, you know, high in labor, and many, many hours on your feet, you have to be pretty strong, up and down to be able to do a lot of the things that chefs do. And I was noticing a few years ago that it became harder and harder to get up after a night’s sleep. To be able to walk even just from my bedroom to the bathroom. I started asking my husband for help in the morning. My joints were aching. Mainly my ankles, my feet, my metatarsals, my wrists and my shoulders. And it got to the point where I could barely hold my, you know, my pans in the kitchen. I couldn’t put things in the oven because the pain was so bad that I was dropping everything. It got to the point where I couldn’t trust myself. Now, you think that somebody would run to the doctor when this was happening? But you know, I was approaching 50, I was going through menopause. I thought maybe this was just part of getting older. I was embarrassed. I was scared. I thought my career was coming to an end. I couldn’t play with my nine year old the way I’d always played with him. I couldn’t even do you know, I couldn’t hide, I couldn’t jump around, I couldn’t do all the things that I normally. Little by little things were diminishing. Right? And so finally I spoke to my sister because I knew that she wouldn’t judge me. And she said, you know Michy, go see a rheumatologist. I remember that a few years ago, you had a little dot of psoriasis but my psoriasis was so tiny. It was like half pea size that I barely even I didn’t even remember that I had it. So, she thought that possibly I could have psoriatic arthritis. I took her advice I found the best doctor I could find in South Florida. Took me a few months to get in, finally did. Sure enough, as you know, you try different things. He led me directly to one medicine that incredibly worked for me and I was really lucky because I know it doesn’t work for everyone. Right? You know, I feel really lucky that I have this solution but you know, it is autoimmune. And I know that through recipes, through different foods, I can maybe help even further my inflammatory problems. And you know, it’s been interesting, I’ve been learning. I’ve learned to you know, definitely advocate for myself as well just like Cyndi said, and to get out there and find more information because the information is out there, you just have to look for it. And you have to look in the right places. And you know…

Cyndi Lauper  09:35

We have the PS…

Chef Michelle Bernstein  09:36

Well there’s yeah there’s a website that we that we are part of that is ThePSConnection.com and you can find so much information there. Your listeners can find it, you can find my recipes on there as well. And, you know, if you feel like you’ve got something, go find a specialist just like Cyndi was saying, you know, you have to find a special dermatologist right because not every dermatologist can find.

Cyndi Lauper  10:03

No because some dermatologist are cosmetologists. Really, you know.

Chef Michelle Bernstein  10:07

That’s true, I didn’t even think about that.

Cyndi Lauper  10:08

Listen I’m a big advocate for cosmetology, right? But right when you have psoriasis, that’s not going to help you. You need someone who deals with psoriasis, knows what it looks like, studies it on all color skins, and understands the disease.

Chef Michelle Bernstein  10:29

It’s interesting though, what you’re saying because I made the mistake of going to the wrong types of doctors at the beginning of my crisis, and I finally realized that I should go to a rheumatologist. Not that I ever thought I would ever need one or you know.

Steven Newmark  10:43

Right.

Chef Michelle Bernstein  10:44

We’re all so ignorant. Right? When all this comes about you have no idea what’s going on.

Zoe Rothblatt  10:48

Absolutely yeah.

Steven Newmark  10:49

Totally yeah.

Chef Michelle Bernstein  10:50

What I did, though, and I think I did, I think this was the smart way to go about it was that I didn’t quit until I found the best and the right rheumatologist for me.

Steven Newmark  11:02

Yeah.

Chef Michelle Bernstein  11:02

And so I was really lucky. I really was, I found a great guy.

Cyndi Lauper  11:07

You know, with all of my experience, that I’ve been working with Novartis, the one constant thing that patients have talked to me about. And the other thing is, when I started to actually talk to other patients with psoriasis, I never did. What are you going to, hey, I like to sit and talk to you about my psoriasis right now, I know you’re doing something else but you know. When you talk to other patients, you don’t feel as alone.

Steven Newmark  11:44

Absolutely.

Cyndi Lauper  11:44

That was the big thing for me. Big, big because I started to isolate and start to feel really alone. And when I even pulled away from everybody in my family, because I really felt like something horrible. And I wanted so much to run away. But when I was given this opportunity, I met other patients, and it changed my outlook. And the one thing they said constantly was, besides the fact that it’s not contagious, and they’re made to feel bad sometimes because people think it’s contagious. It’s not. But the big thing was they didn’t give up until they found something right, until they found a doctor just like Michelle saying, you can’t give up. You have to advocate for yourself.

Cyndi Lauper  11:45

And time is not on your side. So like Cyndi was talking about, you know, her skin condition was getting worse. I know that that year, I didn’t go to the right doctor, my joints are now you know, I can’t go backwards. Right. So the damage is done and I’m lucky that you know, I found something that works for me. But it did, iit was a good solid year in. So whatever damage I’ve done is done. But I can move on from there and so I think it’s essential that not only you know, self advocacy is important, but you need to get on it. And you have to get on it immediately. Yeah, because, first of all, as we all know, it’s not like it goes away. It doesn’t go poof, right.

Cyndi Lauper  13:24

It doesn’t, but it moves, my moved.

Chef Michelle Bernstein  13:26

But you can make it get better, right, you could possibly find something that will help you feel better. And that will do better for you.

Cyndi Lauper  13:34

So that you could live, you want to live.

Steven Newmark  13:38

I was gonna say it’s first of all, it’s incredible how much you use the word advocate or advocacy. Because that’s what we talk about all the time on our show is the creation of a community of patients who have similar or the same conditions and really being a self advocate for yourself. I’ll just say really quickly, the first time my doctor told me that I had psoriasis, he said, you know, it’s a chronic condition. I said  what the is chronic, I never even heard that. I’m like, the only chronic I know, it’s Dr. Dre like what are you talking about chronic? I’m like what, chronic? And I’m like, holy crap, right. It’s like a lifetime thing and like you said, yeah, it only moves in one direction. And the only way, you know if you don’t take the steps to remedy it. So this is amazing advice that you guys are giving. So, thank you.

Chef Michelle Bernstein  14:26

No, thank you. I mean, what an incredible platform, you know, for the two of us to be able to share with other people so that they can jump right in, and hopefully find something that works for them. You know, no matter what it is, we just want people to know that it’s out there and to be more aware. Right. And, you know, what’s funny is when you really think about it, and I didn’t even tell my husband I was so embarrassed because we’re partners and I didn’t want him to feel like he was losing his partner. So no one can jump in your body and feel your pain. Right? So if you don’t do something about it yourself, no one else will.

Cyndi Lauper  15:08

Well, yeah, my husband kept saying to me, he was gonna take me to the hospital, it looked that bad. And I didn’t want him to see me because, you know, with the skin thing you shed, you shed, and it’s gross. And I felt gross. And I didn’t want to, I didn’t want to go out and talk to anyone. One time they said, oh, you should go in the sun, you know, a doctor who thought yeah, just go in the sun.

Chef Michelle Bernstein  15:35

That’s crazy.

Cyndi Lauper  15:36

And I did. And I have scars from the sun.

Chef Michelle Bernstein  15:41

I bet.

Cyndi Lauper  15:41

From where it was on my leg. And that stuff, it doesn’t go away. And you just feel like, okay. And I remember that year, they took a picture of me, and it was on TMZ. And they thought it was mosquito bites. They said well that’s a lot of mosquito bites, look at the mosquito bites. And I just felt like yeah, okay, you know, and what are you gonna say, you know, I don’t say anything. But I just felt like, wow, you can’t go out, you know. And so I was retreating and not doing anything. My husband kept coming and going, you have to go to the hospital. And I was like, what are they going to do? They can’t do anything. So no, finally I found a doctor.

Steven Newmark  16:25

I just want to get confirmation that not everything on TMZ is accurate.

Cyndi Lauper  16:32

I know.

Steven Newmark  16:36

All right.

Zoe Rothblatt  16:37

Thinking about that visibility. And just, you know, going back to what you were saying about the stigma, and you know, feeling unfortunate, like the grossed out feeling. So, we have a program called the HEROES program, which stands for Health Education, Reliable Outreach, Empathetic Support, and it’s dedicated to training beauty professionals starting with hair stylists about psoriasis and skin conditions to help break down some of the stigma. I was hoping maybe you could talk about, you know what that’s been like for you working with beauty professionals with psoriasis and how you feel like a program like this could be helpful, or what’s the most important thing for beauty professionals to know about living with a skin condition?

Cyndi Lauper  17:18

Well, one that you’re not contagious. That’s so important. And it was very important for the other patients. Two is, yeah, I use a lot of creams, because for me, even if I’ve found something that works for me, I find I’m always dry. My arms, your extremities are dry. So no matter what you’re getting up, you’re greasing up. It’s not grease, but you know you want to put a cream on I found myself using the creams and a doctor once said, it had some kind of it’s not just a cream, you can buy it over the counter. It has some kind of…

Zoe Rothblatt  18:12

Like a steroid cream?

Cyndi Lauper  18:14

It’s not a steroid cream. No, no, no, no, just a moisturizer. That’s all. And that you’re drinking water, enough water.

Chef Michelle Bernstein  18:23

But what would you tell let’s just say like a hairstylist, what would you tell them? Aside from the fact that it’s not contagious, is there anything they can do to be more careful?

Cyndi Lauper  18:34

No, because if they’re going to do you roots, and that’s what really killed me. They had their hands in my head. And I was like ew. One guy was very kind and he said, well I have women with psoraisis, and when I put the bleach on it just it gets rid of it and it’s gone. And that wasn’t the case for me. It didn’t go away.

Chef Michelle Bernstein  19:00

Right.

Cyndi Lauper  19:01

So it’s it’s hard if you’re not going to see a doctor for it and continue to work and try and look good. It was very difficult. Very, very difficult. I started to, I love wigs. I wear wigs I don’t care. But I was wearing a wig that was long. And I was wearing net to hide the skin to make it look like it was skin. I mean, I know but what was I supposed to do? I was on stage and then when I came off and I took my clothes off, it was like and there were my beauty professionals and as kind hearted, they were kind hearted and  they were good about it but I was very grossed out. And you know it’s it’s not easy to keep covering it up. You know I even took baths with I didn’t realize how much I was detoxing. I started taking baths, I was gonna really be a genius about it. And I took a lot of baths.

Steven Newmark  20:12

Right.

Cyndi Lauper  20:12

And I detoxed and I detoxed, to a point where I was on stage once and I had global amnesia, because I was running through the arena climbing up the stairs, singing, and I got like, halfway through the set, and I had no memory of the rest of it.

Chef Michelle Bernstein  20:32

How terrifying.

Cyndi Lauper  20:33

Well, wasn’t terrifying for me. But the people around me were pretty scared. And then the doctor, when they took me to emergency room, they were like, what were you doing? And I showed them the stuff and they were like, holy cow. You’ve been detoxing twice a day for a month. So it was, you know, it was so you can’t just self do it. You have to find a specialist. It’s better that way. I’m sorry I put myself through all that and the people around me. But I was afraid and I was ashamed because I felt like I was gross.

Steven Newmark  21:19

Yeah, well, I mean, this is fantastic advice, just the idea that you can’t let it linger. You’ve got to make sure that you find the specialists that can treat you and get on treatment as soon as possible. Be an advocate for yourself. Yeah, and it’s not going away on its own. It’s not a rash. It’s not something that goes away. Yeah and with psoriatic arthritis, it’s not a little pain or ache, you know, you’ve got to deal with it. And the longer you wait to deal with it, the worse it’s going to be.

Cyndi Lauper  21:48

And there are options. You can literally find a specialist who does this and say, what are my options? And there’s a bevy of them.

Chef Michelle Bernstein  21:58

There’s a lot of them.

Cyndi Lauper  21:59

There’s a lot of them.

Steven Newmark  22:01

Right.

Cyndi Lauper  22:02

So, you always have options and yeah, you can make it a little better. Make sure you put cream on twice a day or every morning or whatever. And try not to eat inflammatory foods, you know, but if you have it bad, you should take care of yourself.

Chef Michelle Bernstein  22:22

But as far as those options go, the only way to know that you have them is to go out and find out that you have them.

Cyndi Lauper  22:24

Bingo, right.

Zoe Rothblatt  22:32

One last question for you both. Is there anything surprising that you’ve learned about psoriatic disease since starting this campaign and working together?

Chef Michelle Bernstein  22:41

Well, I’ve learned a ton.

Cyndi Lauper  22:45

I learned about it and I actually do have a little bump on my hand. That because I had let it go, it’s there and it’s not going to go away.

Chef Michelle Bernstein  22:58

I mean, what I what I think neither one of us knew was that it came in so many different forms, right? And ways and shapes and different for different people. And it’s like never ending, right. So also that there is information out there to be had, and how to find it, you know, and that’s why we’re trying to guide people to the right places.

Cyndi Lauper  23:27

And that is the web page, ThePSConnection, you can learn about psoriatic arthritis, and plaque psoriasis and get a lot of information.

Chef Michelle Bernstein  23:40

A lot of information.

Steven Newmark  23:42

The one question I didn’t get to ask. I really was hoping to get a recipe. But if we go to the website, and we’ll post it in our show notes, will there be recipes there?

Chef Michelle Bernstein  23:51

Oh, absolutely. There’s a lot of recipes there.

Chef Michelle Bernstein  23:53

And I try to add a lot of you know, anti inflammatory ingredients, cruciferous vegetables. You know, a lot of capsaicin, things that you can really play with, but that are filled with flavor. You know, don’t worry, everyone, they’re fun, they’re delicious.

Steven Newmark  23:53

Excellent.

Cyndi Lauper  24:11

She’s a great cook.

Chef Michelle Bernstein  24:12

But it happens to make you feel better, thank you Cyndi, as you’re eating it. So yeah, absolutely.

Cyndi Lauper  24:19

She’s not a cook, she’s a chef.

Chef Michelle Bernstein  24:21

I’m both.

Cyndi Lauper  24:22

She’s a great chef.

Chef Michelle Bernstein  24:22

I’m both, I’m my son’s cook.

Steven Newmark  24:26

Well, I’m definitely not a chef, but I could follow a recipe and I look forward to doing that. Because anything to make me feel better. So we really appreciate all this information. As I said, we’ll post it all to our show notes. And thank you both so much for your time and for all that you’re doing on behalf of patients.

Chef Michelle Bernstein  24:48

Thank you, Steven and Zoe. And thank you, Cyndi.

Cyndi Lauper  24:50

Have a good year.

Steven Newmark  24:53

Well, thank you again Cyndi and Chef Michelle, this has been fantastic and we greatly appreciate your time and all that you’re doing for patients.

Zoe Rothblatt  25:03

Yeah, thank you so much for joining us and sharing your hope with patients.

Steven Newmark  25:08

Well with that, Zoe, I don’t know about you, I’m going a little bit of a high that was, that was a lot of fun. It’s great to hear from people who are in the public eye about what they go through, and deal with. And, you know, it just shows these diseases that we talk about week in and week out, they affect people from all walks of life.

Zoe Rothblatt  25:30

Exactly and just like the experience of needing to advocate for yourself and find the right doctor and find your sense of community, the fact that like, you could still feel alone, even no matter what job you have, these diseases are really just, like, hard to live with. And I appreciate how honest they were about that.

Steven Newmark  25:48

Yeah, I mean, I am definitely grateful with all the conditions that I have, I’ve never been the subject of TMZ follow me around taking pictures.

Zoe Rothblatt  25:56

That’s true.

Steven Newmark  25:56

So that’s one less thing you and I have to worry about. At least until the show becomes more popular.

Zoe Rothblatt  26:04

That’s true. We’ll end up on deux moi, is what the kids follow. That’s where you get little sources of the innings and outings of the world. So we’ll see if we land on there. But I’m excited to try a recipe, we have our homework to do.

Steven Newmark  26:22

Yeah, for sure. Let’s get together. Let’s do this, let’s get together. Let’s cook and hopefully get healthier.

Zoe Rothblatt  26:28

Yes, absolutely. Healthy living with The health advocates.

Steven Newmark  26:32

Yeah. So you know, really quick, I know, we always end with a learning. And I’m just going to say, you know, I’m just gonna repeat. The learning is, you know, these diseases hit everywhere, something we already knew. But even for folks that you know, may have more means, more financial means, the disease is the disease, no matter. And what it does to you, psoriasis, psoriatic arthritis, it hurts no matter where you are in life.

Zoe Rothblatt  26:59

Yeah and I think something I wanted to highlight from both of them was just like recognizing symptoms early and you know, believing in yourself to advocate for yourself that something’s not right.

Steven Newmark  27:11

Yes, yes. Well, we hope that you’ve learned something, too. We hope that you enjoyed this episode. And before we go, you want to encourage everyone to check out all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  27:22

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 hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.

Steven Newmark  27:38

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

Narrator  27:44

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. 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. I’m Zoe Rothblatt, Director of Community Outreach at Global Healthy Living Foundation. And today I have a special guest co-host, my colleague, Adam Kegley, the Associate Director of Global Partnerships at GHLF. Hey, Adam, how’s it going?

Adam Kegley  00:33

Hey Zoe, it’s great. Thank you so much for having me. It is wonderful to be here.

Zoe Rothblatt  00:38

And you’re here today to talk about a special program we have focused on the LGBTQ+ and IBD population. We’re also joined by another very special guest, Dr. Carlton Thomas, a gastroenterologist in San Diego, California. Hi, Dr. Carlton, thanks for joining us today on The Health Advocates. could you begin by introducing yourself to our audience?

Dr. Carlton  01:00

Well, hi, and thank you for having me today. I’m Dr. Carlton Thomas. I go by Dr. Carlton on Instagram and TikTok. I am known as the butt stuff and queer health guy on social media.

Zoe Rothblatt  01:11

That’s awesome. And Adam, is that how you found Dr. Carlton, on Instagram?

Adam Kegley  01:16

I did, indeed. I’ve been following him for a while now. And since we started this new program, I thought hey, one plus one equals two. So, really glad to have you.

Dr. Carlton  01:27

Thank you so much. And I’m a Mayo Clinic trained GI doctor and my subspecialty training while I was there was in inflammatory bowel diseases with Dr. William Sandborn, who’s one of the world’s leading GI experts. I was the one fellow at Mayo Clinic doing talks on our required rotational talks about gut health, about the importance of sex and gut health and gay, bi, and queer men, that nobody at Mayo would ever talk about. So I raised a lot of eyebrows even back then, um, because I thought it was important to get that information out there. I was drawn to GI in particular, because I know that so many people from very young ages to very old ages can get gastrointestinal illnesses, especially inflammatory bowel diseases strike people at such a young age and can be very frustrating. Of course, there’s quite a variability in the way it presents from very mild disease to incredibly painful, debilitating multiple hospitalizations, multiple surgeries, that kind of thing. So I just wanted to try to help people. When the pandemic hit, I kind of needed an outlet for my stress relief and anxiety. So I started a TikTok page talking initially about butt stuff, you know, because people don’t talk about butt stuff, it’s a taboo subject, and I thought, who better to talk about it than someone who professionally knows the way around a butt, but also personally, you know, so I put that together on Tik Tok, and it just instantly, almost overnight, 50,000 new followers just talking about that stuff.

Zoe Rothblatt  02:52

That’s amazing.

Dr. Carlton  02:53

Pretty incredible. And three fourths of the people who initially followed me were women. So you know, butt stuff doesn’t have a gender, doesn’t have a sexuality, doesn’t have a femme or masculine role to it. It’s everybody’s got a butt, so why not talk about it?

Zoe Rothblatt  03:07

And can you talk about you mentioned, like some of the reactions that you got at Mayo Clinic, when you started to have these conversations, did you see a similar reaction when you brought that conversation like publicly online? Or was it really different? What sort of response did you get from the community?

Dr. Carlton  03:22

Well, again, this is probably 20 years later, initially, there was that subsection of people who were like, how dare you talk about this kind of thing on an app made for children. And, you know, initially, I was almost going to delete my app, because I thought, oh, this isn’t worth it. And then I said, you know what, I’m just gonna block these people and keep going. And I’m glad I did, because a lot of people all around the world have gotten a lot of the information that they need to have a better life since that time. I branched out to the queer health side of things, because I thought it was also lacking in representation on social media. And a lot of people don’t know about queer health, and why it’s important, and what’s different about it, and how much stuff is missed because people don’t ask the right questions, or how many concerns are skipped over because their providers don’t ask the right questions. So branched out to Instagram and kind of tailored my Instagram more towards the queer health side of things.

Adam Kegley  04:16

I think that’s so incredible. And I’m just so glad to have you here with us today, Dr. Carlton to discuss these things. Of course, and I think not only because these issues, health equity in general are very important to me, but also to GHLF and I think Zoe mentioned it a bit at the top of the episode, but I really wanted to share a little bit more about the program that we’re doing that focuses on the unique challenges faced by the LGBTQ+ community, particularly those living with IBD like Crohn’s disease and ulcerative colitis. And we’ve actually launched the LGBTQ+ IBD experiences survey to better understand patients experiences to confront healthcare disparities in IBD care and just to establish better inclusivity in healthcare settings in general. And we’re really hoping to use the survey results to better inform and educate the LGBTQ plus community in general, but especially those living with IBD, as well as health care providers. And our goal is really to help ensure LGBTQ+ people with IBD receive better access to care and improve condition management. So with that in mind, and in line with what you’d previously said, I want to know what you see as some of the unique challenges faced by LGBTQ+ individuals living with IBD? You know, whether it’s something related to diagnosis, or access to care, or treatment.

Dr. Carlton  05:37

Yeah, there’s a lot that happens with the queer community and IBD and the challenges that come around that. You know, not everybody lives in a place that is easy to talk about their sexuality, even in the United States. You know, if you live in small town, Alabama, it’s probably going to be harder to talk to your primary care doctor about anal sex than it is if you live in somewhere like San Francisco or New York. Between religious discrimination and homophobia, there’s a lot of challenging stuff happening. You know, there’s a huge lack of knowledge on the provider side, there is a lack of information, and obviously, some misinformation out there, and some providers own biases that lead to it being difficult for LGBTQ patients to be honest and open and be able to really express what they really need. And if there’s anyone on Earth that you need to be absolutely honest with and be able to have a frank conversation without judgment, shame or fear is your health care provider, they need to know everything. I’ll give you another instance, I had a patient who was referred to me for refractory ulcerative proctitis. So they were diagnosed with ulcerative proctitis, because they had a colonoscopy and the rectum was inflamed. And their doctor had them on all these high strength like immunologic therapies and they weren’t responding. And he came to me for a second opinion. And the first question I asked him was, do you put anything in your butt and he goes, absolutely, I’m a bottom and I haven’t used a condom in five years. And I checked him for gonorrhea and he just had gonorrhea. He didn’t even have all sorts of proctitis. So there’s that lack of just simple questions about what you do with your sex life. Even in a gastroenterologist’s office where GI doc’s aren’t always comfortable talking about sex, and that’s gotta change.

Adam Kegley  07:15

I couldn’t agree more. That’s actually exactly was my next point is we’ve really noticed similar issues in building the program and the initial resources. You may have seen or heard the stat that only 14 percent of gastroenterologist report routinely inquiring about sexual health for any patients with IBD, which is obviously a really important issue for patients, sexual health that is. And I feel like on top of that, we know that a lot of people can feel kind of a sense of shame associated to living with IBD when it comes to something like sex. And then in regard to LGBTQ+ IBD patients, there can be that sense of internalized shame for some folks about their sexuality or their identity and sex in general. So it’s almost like a double or triply compounded issue for some LGBTQ+ IBD patients. And I was just wondering if you can talk about that challenge a little bit more?

Dr. Carlton  08:07

Well, I think the biggest point that people forget about in our community is the vast majority, probably not as much in the lesbian community, but in the gay, bi, queer, trans community, a lot of us use our GI tract for our primary sexual organs. You know, anal sex is an incredibly important part of sex in the LGBTQ+ community. It’s not the only thing we do, and not everybody who’s gay has annual sex, but it’s an important part of our lives. And if you have bloody diarrhea or diarrhea in general, or rectal pain or abdominal pain, it’s hard to proceed with having sex if that part of your system is messed up. So there’s a lot of overlooking that part of our sexuality when it comes to IBD. You know, and not just the conditions themselves, but often the treatments and the surgeries. Surgeries can dramatically affect your ability to have anal sex for the rest of your life, not just in IBD even someone who has an anal fissure surgery or a hemorrhoidectomy. If they do a stapled hemorrhoidectomy, good luck trying to bottom again. If they do too much damage to the anal sphincter, good luck, bottoming again. People with pouch surgeries, all the time, you could ihave their colons completely removed and have part of their small intestine as their new rectum. Nobody talks about sex with that. Nobody knows if it’s safe to have sex in a rectal pouch. So I get asked all the time, what the hell do I do? You know, my surgeon ever talked about this, you know, am I able to have anal sex, how do I even start to explore that part of my life again. And so I try to give people an outlet to say hey, listen, you know, first of all, when it comes to IBD if you’re in a terrible flare, shelf, the sex part until you can get some good relief or to get as close to remission as possible. Or at least do some alternate things like maybe be aside rather than having penetration, just use oral sex as a way to have fun. So there’s all these things out there that people just overlook when it comes was to queer health care and IBD health care. You don’t have to be LGBTQ to have Crohn’s or colitis affect your sex life.

Zoe Rothblatt  10:07

Yeah, totally. I mean, this conversation has me reflecting I mentioned to you before I have Crohn’s disease. I’m not a member of the LGBTQ community, but I’m thinking about how my GI has never asked me about sexual health. And I guess maybe that was just kind of, oh, the gynecologist will deal with that. And it’s like, kind of crazy that until this conversation, I didn’t even realize that I hadn’t discussed that ever. And I’m wondering what advice you have for questions that patients should bring up to their doctor, if they want to get started with this conversation, you just give such great tips for actually what you could practice at home but how would you get the conversation started?

Dr. Carlton  10:41

I think it’s important to just be like we talked about in the very beginning, it’s important to be absolutely honest and open with your provider, hey, this is me, this is what I plan on doing, this is what I’m interested in doing. I’m gonna have an honest and frank conversation about the do’s and don’ts. And if you’re not comfortable with that, can you help me get to somebody who is comfortable with that, so that I can have these frank conversations. You can say it in a nice way, it’s not always going to be comfortable, but it’s necessary.

Zoe Rothblatt  11:05

What other suggestions do you have for making it safer and more acceptable for LGBTQ+ people living with IBD to speak about their conditions? You know, whether it’s to friends or family or in the doctor’s office as well, just to like you’re saying, make sure they’re getting the best treatment possible? What are other steps we could take?

Dr. Carlton  11:23

I think finding providers that are known for being welcome and opening. Talking to other queer people who have IBD is a great way to network. There are some support groups out there, and some social chains out there through like Reddit and Instagram, other places like that, where people do talk about things like this. And you know, if your provider just shuts down and just doesn’t want to talk about it, it’s probably time to change providers, if that’s possible. I mean, it’s not always easy depending on where you are. GIs aren’t always that easy to get into anymore. But ask around, talk about it, you know, let people know how important it is. I think those are big steps.

Adam Kegley  11:58

I think you really hit the nail on the head. Actually, I remember when I was younger, when I first started college, I was still going to my family general practitioner. And I think it was the first time that sex and gut health kind of came up. And I had questions and I could tell immediately that he was really uncomfortable.

Adam Kegley  12:18

And it made me very uncomfortable. And I wasn’t totally out at that time, either. So that made me even more uncomfortable. So I decided I’ve got to do something. And I think it took me a while to start asking some friends that I had made at college to kind of find a provider that I could feel more comfortable with. And I think everything that you said just really goes a long way to helping people in general feel like they have some power over there and some agency in their decision making. And I think in that regard, you know, one of my questions is what message would you like to send to LGBTQ+ people living with IBD who might be hesitant to share their experiences? You know, maybe it’s something like through a survey, the survey that we’re doing, or, you know, something like that? Why is it important to make their voice heard through something like this or with friends and family in their lives?

Dr. Carlton  12:18

Yeah.

Dr. Carlton  13:09

Well, I think it’s really again, important to know that sex is something that society doesn’t like to talk about across the board, especially here in the US. There’s a fear of judgment and shame. No one talks about IBD and sex it seems but these tailored resources, like you guys are about to provide for people with this survey, highlight the needs of the community, make people feel like they’re not alone, and help them to open up themselves and be able to share their own experiences. And when you get that courage, you can just be open and honest and represent the community and share your struggles, your disappointments, your hopes and your dreams. I think it’s crucial to help others learn specifically about your needs and about your struggles so that people will have an understanding of what other people go through. And it really helps get action on the importance of this topic. You know, if we just sit there and just say, oh, yeah, it’s tough to talk about, let’s just not talk about it, let’s not do anything, nothing’s going to change. But these important things like you guys are doing, I think it’s going to have a huge impact on educating providers, but also empowering patients.

Zoe Rothblatt  14:10

Thanks for that, Dr. Carlton. And I mean, what you’re doing is so important to you mentioned at the top, I just wanted to highlight it again that you said that, you know, people reach out to over social media, and that’s free of charge. And I think having an outlet like that for people maybe like have a hard time affording health care or just, you know, delay doctor’s visits, because of finances to be able to provide what you do free of charge and give that support to people is tremendous. So, thank you. And Adam, you had mentioned our survey, where can our listeners find it I’m sure we’ll put a link in the show notes but if you want to let us know.

Adam Kegley  14:44

Thanks, Zoe, and thanks to Dr. Carlton too. It’s super simple, anyone looking to take our short 10 minute survey can find it at ghlf.org/lgbtq-ibd-survey and click on the take the survey button and just like you said, I know I said a mouthful so for interested, folks, this survey link is going to be in the show notes. So you can check it out much more easily and click it from there. Again, just like a huge thanks to you Zoe and to Dr. Carlton, especially for all of this incredible insight it’s really, really a privilege, so thanks.

Zoe Rothblatt  15:19

Yeah, thanks so much, Dr. Carlton. It was great learning from you. And we’ll also of course, drop a link to your social media in the show notes so our listeners can find you.

Dr. Carlton  15:27

Thank you.

Zoe Rothblatt  15:30

Well, Adam, that was a really great conversation we had with Dr. Carlton and Steven and I always like to wrap up the show by sharing learnings. I can start by sharing that I was reminded in that story that Dr. Carlton said about the misdiagnosis with the STI how important it is to talk to your doctor about your lifestyle and things going on in your life and be really clear about your symptoms because you want to get the best care that you can receive. How about you, what you learned today?

Adam Kegley  15:55

I couldn’t agree more. I think Dr. Carlson gave us so many great learnings and I think mine kind of goes along perfectly with yours. And it’s that not only is a survey like ours important to help us create resources for other LGBTQ+ people living with IBD but it’s also a for us to help all the providers out there too, so that they can get you the care and resources you need to especially in this case for the LGBTQ+ community.

Zoe Rothblatt  16:23

And listeners, we hope you learned something too. 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.

Adam Kegley  16:39

And I’m Adam kegley.

Zoe Rothblatt  16:40

We’ll see you next time.

Narrator  16:45

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  00:08

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, Associate Director of Community Outreach at GHLF.

Steven Newmark  00:22

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 Kristal Hartman, who works with the Obesity Action Coalition, and she shares her story about being a patient, how the medical system failed her with some of the common misconceptions around obesity, ultimately finding the right care team, and the advocacy that she does now. So Kristal, welcome to The Health Advocates.

Steven Newmark  00:48

Welcome Kristal.

Zoe Rothblatt  00:50

All right, why don’t you start off by introducing yourself to our listeners?

Kristal Hartman  00:54

Yeah, happy to do that. So my name is Kristal Hartman and I am a person living with the chronic disease of obesity. I am a proud member of the Obesity Action Coalition. I have served in many capacities on committees and on the board. And I am currently the chair of the National Board of Directors for the OAC. I’m a mom of three boys and I live on a lovely little farm in Oregon. And I’m really excited to be able to talk to your listeners today.

Zoe Rothblatt  01:25

Yeah, I’m so excited that you’re here having conversation with me and our listeners. And we had got connected through your work with OAC, I was wondering if you could tell me a little bit more about how you got involved with them?

Kristal Hartman  01:37

Yeah, absolutely. So, I actually did my very first Advocacy Day on on Washington, DC, on Capitol Hill. And as a prep for that we had a group come speak to us about living with the disease of obesity, and how to really tell our story when we were meeting with Congress and that was two of our OAC members. And after they presented and walked off the stage, I ran out of the room and said, who are you and I want to get to know you and what kind of work you’re doing. And so it was so wonderful, because they are the ones that introduced me to the Obesity Action Coalition. And they said, actually, in a few months, we’re going to have our annual convention and that convention was in Washington, DC. And so I decided that I was just going to sign up for the convention. And I didn’t know really anybody else that was going to be there. Just the two folks Hattie and Ted that had introduced me to the OAC. And so I showed up not really sure what to expect, and was incredibly welcomed into this amazing community of people, where we really had the opportunity to connect with each other and to get great science based education about obesity, and to learn how to advocate for care for ourselves. And at the end of that weekend, it was amazing, because we wrote on a kind of like a big card, what our key takeaway was from our time together, and I remember that I wrote, I found my people, because I had felt really alone in my weight management journey. I had one person that was kind of my mentor through my bariatric surgery, but I was so far away from my surgery center, because I live in a small town and had to travel to our big city for surgery that I wasn’t able to really connect with people, because back then they were in in-person support groups, per se. And so I just felt like I had found the people who were living lives that were so similar to me, and having experiences that were so similar to me, and OAC has been and will continue to be an important part of my obesity journey.

Zoe Rothblatt  03:40

That’s amazing. I’m so glad you found them. I’m not sure if you know this, but I’m also a patient. I have arthritis and Crohn’s disease. And I agree with so much of what you’re saying that finding a community is such a turning point in the patient journey, when you’re just like, able to be around people that just get it in a way that other people don’t.

Kristal Hartman  03:58

Yeah, that’s so true. And Zoe, I’m so sorry to hear that you’re managing chronic conditions as well. But you’re right, nobody understands it, like the people who are also going through it.

Zoe Rothblatt  04:09

So taking a step back, can you tell me a little bit more about your patient journey? And you mentioned surgery, like how you came to make a decision to get surgery and like how has it helped you or how you’re feeling since? Maybe just from diagnosis to now I know it’s like a long thing, but just like, you know, highlights of the journey for you.

Kristal Hartman  04:28

Yeah, absolutely. So, I started actually my journey with obesity in my teens, and it really came about because I was having really, really painful periods, and I was put on a form of birth control that was sort of like injected, you know, with a needle and at that point in time to try to manage my cycles, they felt like this was the best option. However, very quickly and continuously I ended up gaining a lot of weight during this time. And so I left, I was on dance team, I was the girl on dance team that needed the plus size dance costume. I was always super active, I played basketball, and I was on dance team, and I did everything possible, I was in choir. And so I was just really super active kid and always had been, but my weight started rapidly increasing after this form of birth control. And so what ended up happening is that I went to college, and instead of the freshman 15, it was more like the freshman 50 for me, and I just continued to gain weight without any ability to really figure out how to lose weight. And so it was finally in my early 20s, that I saw an endocrinologist for the first time and he is the one that actually diagnosed me with polycystic ovarian syndrome. And part of that really is insulin resistance and a real difficulty managing weight. Part of that also includes issues with fertility. And so she told me at that time, I was young and newly married in my early 20s, that it was probably going to be difficult for me to have kids on top of that I was diagnosed for the first time with thyroid issues, too. So, I had kind of all of these hormonal issues that were impacting me all at the same time, and really working against any efforts that I tried to take with diet and exercise to lose weight. And so when I started my fertility journey, like she said, is a you may have problems getting pregnant, you may have problems staying pregnant. And that was true, I had a miscarriage. And then I had a successful pregnancy. But then I couldn’t get pregnant a second time. And I had to go on some hormone medications to help to get pregnant, and I had another miscarriage. And then I finally had a successful pregnancy with twins. And so during this time, I’m taking all these hormones, and I’m going back and forth, and up and down with pregnancies. And then I had a twin pregnancy where you know, I also had to obviously gain weight to protect two babies. And by the time that was all said and done, I was just at my highest weight I had ever been. That started to impact my health and by my early 30s, I found that I was so sick. My kids would say like, Mom, you’re so tired, you just come home and you like go to bed or you get on the couch, and we’ll watch a movie. I was exhausted having a hard time getting through my days. And I talked to my physician about this my primary care physician, and we had the conversation about weight pretty consistently as I was going in for all of these comorbidities of obesity. And so every time I had something new pop up, she’d add a medication. So in my early 30s, I was on 14 medications.

Zoe Rothblatt  07:48

Wow.

Kristal Hartman  07:48

For comorbidities of obesity. And yet every time we talked about it, he would say like you’re young, you’re educated, you’re in the medical field, you should be able to handle this, you should be able to do this, put your fork down, walk a little more, eat a little less, and you would be able to control your weight. And so I internalized a lot of that, you know, as people living with obesity, we deal with a lot of weight bias and weight stigma. A lot of that is external, but a lot of that is also internal. And oftentimes we say the meanest things to ourselves that we would never ever say to another human being. And so I just felt really guilty. Like, I’m so successful in all of these other areas of my life, why can I not control my weight. And so it was my endocrinologist at the time who was on the weight journey with me and we tried different diets. We tried some of the early FDA approved medications for weight loss and unfortunately, I had a bad side effect from one of those. And so at some point in my early 30s, he said, okay, we’ve literally tried everything, and I think it’s time for bariatric surgery. And I couldn’t believe that because in my mind, people who had bariatric surgery were older, you know, 50s, 60s, 70s maybe. And here I was maybe like 34-35 at this time. So I went back and talked to my primary care physician, and she completely shamed me. She said, you know what, I can’t even talk my 400 and 500 pound patients into surgery, I can’t even believe that you’re considering this. And she was saying this while filling 14 prescriptions every month for me.

Zoe Rothblatt  09:20

Oh my gosh.

Kristal Hartman  09:21

And I also had a BMI of 42. Now we used to call that morbid obesity and thank goodness we took the word morbid out of that now it’s just severe obesity or obesity is now diagnosed in different types like type 1, 2, 3, 4, etc. But back then I was in the morbid obese category for my age and height and weight. My BMI was 42. So I waited a whole year and during that time, I got even sicker and sicker. I had to be hospitalized twice for comorbidity complications. For me, it was asthma and breathing and so it just got worse. And so finally a year later, I called the bariatric surgery office and I felt like like the biggest failure, and I was crying when I called and made my first appointment. But when I went and I got through obesity care for the first time, it was such a relief to be around physician and staff that knew exactly like what to do and how to treat someone living with this disease. And so that was a game changer for me. Since then, it was about a year later that I was introduced to the Obesity Action Coalition, and then became an advocate all of these years. But also during that time, I learned that I was going to need every tool in the toolbox. So for example, I needed bariatric surgery, but I also had weight regain. And at that point in time, it was available for me to get one of the GLP-1 medications and it was covered by my insurance. But once it was no longer covered, you know, I’ve had some yo-yo weight gains and losses, because for me that hunger signal, it’s not like I got the surgery, and it was one and done. That’s not what a chronic disease does. Even with surgery, this is still a long term disease, it still manifests itself in different ways. It’s complicated, and multifactorial, and so I was still having those major hunger signals and obsessing about food and GLP-1 certainly helped me with that. And yet, they’re absolutely nearly impossible to get access to because of lack of coverage and I will address some of that a bit later. But ultimately, I needed mental health care, I needed help from a dietician nutrition to help me make sure that I was getting all of my correct nutrients and vitamins. So you know, what we really advocate for is the ability to access all of the tools in the toolbox. And here I am today and I’m still utilizing several of those tools and I know I will for the rest of my life because a chronic disease means it’s a lifelong disease.

Zoe Rothblatt  11:49

Yeah, thank you for sharing all that. It angers me so much that that one doctor just like failed you and didn’t give you any of those tools. And I’m wondering, what do you wish that that doctor had said to you or other people around you at said to you that would have been helpful instead of the harmful messaging that you did receive?

Kristal Hartman  12:10

Yeah, definitely. Well, first of all, Zoe I didn’t think that I deserved better care. And that’s really hard for me to think about now, when I look back at that time, I thought this was all my fault, this disease. And when she was saying things like that, I internalize that and was like, yeah, she’s right, this is so true, I should be able to handle this what is wrong with me, you know, and so that was really difficult time for me. After I had the surgery and lost 100 pounds and got into a normal BMI range, she suddenly became like, oh, well see, like, that worked great. And so I actually changed health care providers at that time, because I said, you know, I deserve better than this. And I now have a healthcare team that is just like my dream team. They’re amazing. And that would be one thing that I would encourage for people during that time when I was hearing those wrong kinds of messages is just to be able to say, this isn’t fair, we know that you’re working really hard on your health. And we want to be here to support you through whatever tools you may need in this journey, because there were people that were nervous that I was having a permanent surgery, right? I mean, there’s always risks with that. And so the best thing that is that my family and my friends and my other doctor were there, and my mentor to who had had bariatric surgery about a year before I did, were all there and they were that support team that I needed. And so if someone has a person or a health care provider in their life, that is saying these harmful messages and contributing to weight bias and weight stigma, I really encourage people to find the right health care provider that understands this disease and is willing to be on the journey with you and help you with all of the different tools you may need. Even Obesity Action Coalition has a physician finder where you can look for obesity medicine specialists, and a lot of them see people virtually right so it doesn’t even matter where they are in the country. But we deserve better health care than that. And we deserve non biased, non stigmatized, compassionate health care. So I really encourage people to find that health care team that supports them.

Zoe Rothblatt  12:28

That actually leads me into one of the questions I had for you. I know that in obesity Bill of Rights was recently published, and I think OAC was involved in that, right?

Kristal Hartman  14:33

Yeah, absolutely. It’s exciting because it’s honestly the weight stigma and the weight bias is actually a discrimination issue. You know, in our country, the trends are changing, we hope you know toward anti discrimination of all people for all reasons, right? That we shouldn’t judge or shame or blame or you know, have biases against people of you know, certain size, or religion, or sexual orientation, etc. And unfortunately, people living with the disease of obesity still face a lot of discrimination. And so we worked on that patient bill of rights because we believe that as people living with obesity, we deserve the same compassionate treatment, the same kinds of access to affordable obesity care. And that, you know, as a nation, we should be doing things and making decisions to help people living with the disease of obesity, just like any other chronic disease, like people living with diabetes, or high blood pressure, or heart disease. That our patient bill of rights is really about having equal access and equal rights across the board.

Zoe Rothblatt  15:41

As you should. I mean, it seems so obvious, right?

Kristal Hartman  15:45

It really does.

Zoe Rothblatt  15:46

But that’s not the reality.

Kristal Hartman  15:48

That isn’t and we’re still shown in media without most of the time, it has no head. You know, when we’re shown in media articles online or on the TV, were often shown people living with obesity are rarely shown in a positive light, right, like maybe exercising or eating a healthy meal, we’re usually found without a head so it chops our head off, it usually just shows the middle generally focusing on a big jiggly tummy, you know, oftentimes holding a you know, fast food, restaurant cup, or burger or whatever it is. And that’s just not the reality. The reality is that people living with a disease of obesity care very much about their health, and we can guarantee absolutely 1,000,000% guarantee that we have tried a million things to manage our weight. So this isn’t a disease that’s about lazy people who don’t care about their house who are unmotivated. That’s not who we are, that doesn’t define us, this disease does not define us. And in fact, we’re the exact opposite of that description. And absolutely, we all understand that there is personal responsibility, and that moving our bodies and eating healthy foods are a critical part of managing obesity. But we now have actual science backed evidence that shows that this disease is so much more. That metabolically and physiologically, our bodies do not work the same as people who do not have excess weight. And that’s where all of these new medications and treatments are coming in to try to address some of these issues that are really specific to people’s bodies who have extra weight, and that science should be supported with affordable access to these treatments and to these tools.

Zoe Rothblatt  17:37

Totally. So let’s talk about some of those treatments and tools in the advocacy that you’ve been doing around them. Obviously, these GLP-1 drugs have gotten a lot of attention in the media, like what is that been like for you?

Zoe Rothblatt  17:48

Yeah, honestly, it’s good and bad. The good part is, is that it is elevating the conversation about obesity and it is making people more aware. In fact, there was a Pew research study that just came out that talks about the fact that the majority of Americans now believe that obesity is a disease and that it should be treated as such. So that kind of trend is changing in a positive way. But it’s also been really difficult to have all of the media coverage too, because a lot of that media coverage does not focus on the science of obesity as a disease. And it’s often related to vanity use, right? So like this star lost this much weight, or do we think this star isn’t admitting that they’re using Ozempic, or whatever. And so it’s really highly sensationalized, and it makes it also sound like everyone in the country is on a GLP-1 and that’s just not true. And so when we are advocating for access to these treatments, we’re advocating for comprehensive care. So that means that you actually are connected with a physician and physician team that is helping you manage your overall obesity. It’s not just about writing the prescription for this one type of medication. It’s also making sure that maybe you’re working with a mental health care provider because you have maybe eating disorders or different issues that contributes right to your view of food, and maybe it’s a nutritionist that will help you make grocery shopping lists and put meal planning together. I mean, there’s all of these other components besides just medication and so when we advocate like we were this week on Capitol Hill for the Treat and Reduce Obesity Act, so TROA, Treat and Reduce Obesity Act, when we’re advocating for that right, there’s two parts, it’s comprehensive care. For seniors or older adults in America, we believe that on one hand that they deserve all different types of health care providers to help with obesity. Right now for Medicare, only primary care physicians can bill for obesity and even when they do bill for obesity, they have to bill it three or four down because it’s not going to be a visit that’s paid for if it’s just primarily obesity. And we also know that primary care physicians, number one, if obesity is not their specialty, and number two, they hardly have any time with patients. I mean, we’re talking 10, 15, 20 minute appointments, where they’re addressing all kinds of things and so their lack of time to truly address obesity. One part of the bill is saying, okay, there are other kinds of health care providers that can also bill for obesity, maybe it’s a cardiologist, or an endocrinologist, or a dietitian, but it opens up the ability for people to add to their health care team for treatment of obesity. The other part is access to the FDA approved medications. And right now Medicare is paying for them for diabetes, but they are desperately worried about the cost of covering these same medications at the doses that they are provided for obesity. And first of all, they don’t look past about 10 years, Congress doesn’t when they’re looking to pass a bill and look at the cost of that. But we’re really urging them to look at what happens 20, 30, 40 years down the road. So I had my bariatric surgery when I was 36. So as a 35 year old before my surgery, I was on 14 medications. Fast forward that 30 to 35 years, I would have been a Medicare patient at 65 to 70, who was incredibly expensive, because those 14 medications probably would have turned to 25 medications, I would have already had diabetes, because I had pre-diabetes, maybe I would have even had my first heart event as a woman living with obesity. And so we’re really encouraging them to look long term so that they understand that by treating obesity, now, they’re actually decreasing the incidence of the comorbidities like diabetes, heart disease, high blood pressure, etc. So those things will actually even out one day, we know that the expense is daunting, upfront. But as we treat obesity, the incidence of these other diseases will decrease.

Zoe Rothblatt  21:53

And when you meet with legislators, what sort of response do you get? Are they like more in favor of the bills? Do they have a lot of questions for you? What’s it like?

Kristal Hartman  22:01

Yeah, yeah. And they do have a lot of questions. It’s been really interesting, because I was on the Hill in December, and then again, just this week, and the news media coverage actually means that there is a lot of questions about the correct utilization of these drugs. And what we’re really asking for, which is comprehensive care, not just someone to write the prescription because you need to lose 15 pounds before your class reunion, right? That’s not what these are for this is for chronic obesity, and for people who are actually diagnosed and being treated as such. And so we have to explain that. I will say that before these drugs were even on board, we were advocating for TROA. For 11 years now, we’ve been trying to get this passed. So this was happening long before all of these pharma companies jumped in and started making obesity drugs, right. And so we were advocating for equal comprehensive care set for 11 years now and we still have yet to get this through. And I will say the one thing that we have seen a good trend in is that more and more people do believe that this is a disease, that this isn’t just an issue of personal responsibility that these people should just take care of themselves. You did this to yourself, now you need to fix this, right? Because that’s been the message that we’ve received for years and years, is that you did this to yourself, therefore, it’s on you to fix it. And the Medicare rules pretty much explicitly state that because they consider weight loss like a vanity, you know, situation and an unneeded type of coverage. So we really explain that to them. A lot more people are, in Congress are believing and admitting to the fact that this is a disease, but they have a ton of questions about cost. And we’re putting a lot of pressures even on our pharma folks to really rein in the cost of knees so that we can get these bills passed, and that people will have access to reasonable co-pays for these medications.

Zoe Rothblatt  23:54

We really have been brainwashed to think that obesity is just a personal choice and not a disease. And I’m so glad to hear you squash that and say no, it’s a disease. And we need to admit that, like say it out loud. Obesity is a disease. And it’s so important that people like you are sharing your story. And you know, I’m just so grateful for the OAC and being connected to you guys, because it really is such a misconception out there.

Kristal Hartman  24:19

It really is. And your personal story means everything and that’s what we teach all of our new advocates. You know, I had the opportunity to spend the day on Monday when we were on the hill with one of our new advocates who also lives in Oregon. And just seeing her excitement and passion for the work that we’re doing is so fantastic. And it really comes down to the personal story. When we’re talking to Congress and we’re saying we are your constituents, we live in your state, we vote for you. This is something that is critically important to people living in your state and it is time to treat this as a disease and to treat it equally to all other chronic diseases and so that’s an important part of every single one of our stories and our conversations with Congress too.

Zoe Rothblatt  25:06

For sure, and how can people get involved if they want to with obesity advocacy?

Kristal Hartman  25:10

Yeah, we would love to have more advocates and advocating doesn’t necessarily mean that we, you know, you have to fly to Washington, DC and speak to Senators and House of Representatives. If that’s your jam, great, we would love to have you join us on Capitol Hill. But there’s so many different ways to advocate, you can advocate in your own community, you can advocate at the state level, and you can advocate at the federal level. And so I really highly encourage people to go to the OAC website as obesityaction.org. And there’s actually a whole entire website called the Action Center that will give you all different sorts of ideas of how to take action, sometimes taking action is going on Instagram, or Twitter and responding to negative news stories, or people who are exhibiting obvious weight bias and weight stigma and just calling them out and say, hey, you used this picture, did you know that OAC has an image gallery of people living with obesity, and we want you to use that image gallery instead of the headless jiggling tummy that you used in your news story. And so there’s so many different ways to advocate and to get involved. And while you do, you’re actually also becoming a part of this incredible community of people where you’re going to find support and science based education at the same time, which you know, it’s a kind of a three prong approach at OAC, we really focus on support and advocacy and education. So we would love for people to join as a member of the OAC, and to advocate in any way that they feel comfortable doing so.

Zoe Rothblatt  26:44

That’s amazing. Thank you and we’ll put a link to that in the show notes so people can find you guys.

Kristal Hartman  26:49

Great.

Zoe Rothblatt  26:49

And we’re excited to work with you more on some advocacy trainings and..

Kristal Hartman  26:54

Yes, we can’t wait. Yes, I’m so happy that we that’s what Chrystal was telling me, one of our team members of our staff of the OAC. And we love that your team is so passionate about this and passionate about chronic disease in general, but that you’re really ready to jump out and help us with this cause, right help us really hit home that obesity as a disease and that we deserve equal and compassionate and non bias care and access to all of the treatments and tools in the toolbox.

Zoe Rothblatt  27:25

Exactly, yeah. Well, thank you so much Kristal for joining and sharing your story and your work with OAC. I really appreciate it.

Kristal Hartman  27:32

Absolutely, anytime, we’d love to jump on and chat. And hopefully we get to see you on the Hill one of these days too.

Zoe Rothblatt  27:38

Definitely yeah, looking forward.

Kristal Hartman  27:40

Yes, us too, thank you so much.

Steven Newmark  27:44

Well, thank you, Kristal, that was another great discussion. And Zoe you’re becoming quite the interviewer, I hope we don’t lose you to ABC News or something with your skills.

Zoe Rothblatt  27:53

I’m right here. I’m a Health Advocate at heart, you guys don’t have to worry about me, but thanks, Steven.

Steven Newmark  27:57

Excellent. Well, it was really great discussion. I definitely learned a lot. I know your next question is going to be about learnings and I’ll just say for me, you know, she talked about our patient journey and what it’s like specifically with her patient journey, is really the most that I’ve ever heard from someone specifically dealing with obesity and that patient journey. So it was quite a learning for me and the misconceptions and bias around obesity.

Zoe Rothblatt  28:19

Definitely. And I really enjoyed the part where she talked about just well rounded care.

Steven Newmark  28:23

Yeah.

Zoe Rothblatt  28:24

And supporting patients in multiple ways, in a multidisciplinary healthcare team. That was really great.

Steven Newmark  28:30

Yeah, totally. 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  28:40

And if you have any questions, comments, episode topics, just want to say hi to us, definitely email us at [email protected]. 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 that review, and hit that subscribe button. I’m Zoe Rothblatt.

Steven Newmark  29:01

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

Narrator  29:06

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, Associate Director of Community Outreach at GHLF. 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, I’m joined by Jae Walker, patient advocate in our CreakyJoints community. We’ve been connected for a couple of years, I’m excited to catch up with them about their diagnoses since I’ve known them, but also just hearing how their journey started with rheumatoid arthritis years ago, and ultimately, what advice they have for patients. So, Jae, welcome to The Health Advocates.

Jae Walker  00:47

Oh, thank you. I’m so excited to talk to you again. It’s been so long, too long.

Zoe Rothblatt  00:52

I know, I still have your artwork. I got two pieces from you and I still have them both hanging in my apartment. So, while we may not have talked in a while, I’m thinking about you all the time.

Jae Walker  01:01

Oh, I’m so excited and I actually just thought about you the other day, because I had another patient purchas one of my most recent pieces that I did for CreakyJoints when I did that blog called The Darkness of Pain.

Zoe Rothblatt  01:14

That’s awesome. Well, yeah, why don’t you introduce yourself to our listeners, tell us a little bit about you and your story.

Jae Walker  01:21

Okay, so my name is Jae Walker and I feel like I’m kind of like your average, everyday person. Except when I was 34, I first started showing symptoms of rheumatoid arthritis. Except for it didn’t come on slowly. For me, I felt I kind of got run over with it. I went from nothing to all of a sudden. I was working for a local grocery store, I was working in the dairy department. And I was pulling 1,000 pound dairy pallets on my knees in the dairy department, stocking the milk and the butter and doing work that a lot of the guys and stuff wouldn’t do. And I’m actually non-binary, at the time I identified as female. So, I was doing a lot of stuff that guys wouldn’t do. So, I was on my knees, and knee pads like throwing all this product and everything and then all of a sudden, I was in so much pain that I started drinking wine at night in order to even go to sleep because the pain was so bad. Which is a really big deal for me, because addiction and alcoholism runs in my family. And I was in so much pain that I would wait until the absolute last minute to go to the bathroom because squatting to sit down on the toilet was so painful. It brought tears to my eyes. I lived up on the second floor, and I had to drive 30 minutes to work. So, I would do all of this physical manual labor, and then I would get in the car. And I was so stiff and swollen by the time I got home that it took me about 10 to 15 minutes to get out of the car. And I was like huffing and puffing and talking to myself. And then I would barely make it across the parking lot and stand there at the bottom of the stairs looking up and it felt and looked like Mount Everest to me, because every time I looked up, I just wasn’t even sure how it’s gonna make it up the stairs to get up to my apartment. And once I did, and I had my days off, I just didn’t go anywhere. The breaking point for me was my feet hurt so bad because I had swelling in my hands and my feet. I had joint aches and pains. I couldn’t function. I had the brain fog, I had the fatigue, I couldn’t focus, I couldn’t concentrate. And the pain was just getting worse and worse. Anyways, I had two days off together and my feet hurt so bad that I spent two days scooting around on my butt in my apartment because I couldn’t even walk on my feet. And I was just kind of trying to like suck it up. Like you don’t go to the doctor, you just kind of handle it. And I remember, he kept trying to get me to go to the doctor and try to get me to go. And I remember turning them at one point and saying, hey, do you think this is bad? Do you think I should go to the doctor?

Zoe Rothblatt  04:25

You can’t walk and you ask the question, oh, do you think this is bad? I can’t do a basic function, maybe it’s fine.

Jae Walker  04:36

And he looked at me. So look, I’m autistic and I miss social cues, right. And sometimes I miss sarcasm and stuff like that, but I didn’t miss this. He’s stood there and stared at me. Yeah, you think? You can’t even walk, you’ve got to go to the doctor and he was so relieved because cuz I’m really, really stubborn and I really kind of don’t listen to people.

Zoe Rothblatt  05:03

But how did you think to even go to a rheumatologist? Is that where you started? I can’t imagine like you said, oh, this could be rheumatoid arthritis. You know, how did you even get to that point?

Jae Walker  05:13

Um, no, I didn’t even think that at all like that wasn’t even on my radar because like a week or so before that I had dropped a crate of eggs on my left foot. And I had been really hobbling more so than normal around and that was kind of an extra incentive to go to the doctor. So, genuinely in my head, here’s what I thought I was going to happen. I was gonna go to the doctor, he was going to look at it and say, oh, you bruised it, or whatever, maybe give me something to wrap it up, maybe something stronger than what I could get over the counter, or maybe tell my work that I had to take some time off. I don’t know, something like that, so that I could actually rest it and then I would go back to work. And or maybe he figured out something that I just didn’t know, but I’d easily get fixed and I would be okay. It still didn’t occur to me that there was genuinely something really very wrong with me. So, rheumatology and rheumatoid arthritis, were not even on my horizon. I had no idea. When I went to the doctor, I went to my PCP and he was like, on top of it, he absolutely automatically was the first thing he suspected. I presented equally on both sides. But my problem was the same problem that I’ve always had is I presented with the symptoms, but no definitive tests.

Zoe Rothblatt  06:45

Oh, like the bloodwork?

Jae Walker  06:47

Yeah.

Zoe Rothblatt  06:47

Yeah.

Jae Walker  06:48

Inflammation does not show up in my bloodwork, never has. My RA factor was borderline. It just wasn’t really there and he could look at me and touch my joints, they were like red and swollen. I presented evenly on both sides of my body. I struggled. I was stiff and swollen and it took me a while to get going when I got up in the morning. And then when I laid down at night, that pain that hits you at night.

Zoe Rothblatt  07:19

Yeah.

Jae Walker  07:19

After you stop, I mean, I had all of that. But X-rays were negative, the RA factor was negative, the inflammation levels were normal in my blood work, like none of it was there. So, he couldn’t diagnose me or do anything with it. He straight up told me I think you have rheumatoid arthritis, but I can’t diagnose you with what I have. I have to send you to a rheumatologist. So I said, okay, I still was thinking, okay, fine this is just no big deal. And still don’t know why I didn’t think it was not a big deal.

Zoe Rothblatt  07:52

So you got to the rheumatologist and then they gave you the rheumatoid arthritis diagnosis?

Jae Walker  07:58

Yeah, well, I ended up going to the doctor, and she ended up running the same tests. It was like standard procedure, I guess and so then she still didn’t get the diagnosis. So, she ended up diagnosing me with an MRI of my left foot.

Zoe Rothblatt  08:14

Wow.

Jae Walker  08:15

Yeah.

Zoe Rothblatt  08:16

And that’s where she said, that’s rheumatoid arthritis?

Jae Walker  08:20

Yeah because she took all of my symptoms and she said, okay, look, I’ve done all of these tests. I can’t definitively diagnose you with this. This is what we’re gonna do, you tell me where on your body it hurts the worst. And I did what I always did back then, because of course, it was the worst back then it was uncontrolled, I laughed.

Zoe Rothblatt  08:38

You were like circling your entire body on the page saying this whole thing, that’s what hurts.

Jae Walker  08:44

Yes. I hate when, I hate when healthcare providers asked me that, especially when your body is not controlled. Where does it hurt the worst? And it was like uncontrollable, it was always uncontrollable for me. Like, what do you mean where? But I decided on my left foot because I had dropped that crate of eggs on it. And so she did an MRI of my left foot and so she pulled up the MRI and started showing me slide by slide and said okay, we’ve got inflammation, and I had so much inflammation on my foot.

Zoe Rothblatt  09:20

And what was that like for you to see that and actually say like, wow, there is something wrong?

Jae Walker  09:25

Honestly, I think I dissociated.

Zoe Rothblatt  09:28

Yeah.

Jae Walker  09:28

Because it went from being oh, this is something that is an easy fix or short term treatment, to all of a sudden she was talking to me about steroids. And I knew this was a possible treatment and what my PCP had said he thought was wrong with me. She, when I came to her and told her that she said, we’re not going to commit to anything, I have to check you out. Well, being who I am, I analyze and prepare the hell out of myself for everything. So, I had done research. I knew what kind of medication steroids were, I knew what kind of drugs and stuff or possible as a treatment for this. And so when she told me that, it was like, the world stood still, for me, I stopped hearing everything around me. And everything inside of me kind of shattered all at once. Because this was permanent, and it was long term. And I felt broken, and that’s what it was, I just, I felt broken and I felt extremely overwhelmed.

Zoe Rothblatt  10:34

Yeah, it’s like you were feeling physically broken from all the pain. And then like the emotional gravity of it just came crashing down to, right?

Jae Walker  10:43

Yeah and that’s worse than the physical part of it, the emotional side of it. Because within a month, I had a panic attack, end up in the hospital thinking that I was having a stroke. But I was having a panic attack, because I was so absolutely overwhelmed with all of the choices I was having to make, not to go out of my way to like exercise.

Zoe Rothblatt  11:05

Oh, my God.

Jae Walker  11:06

It was pretty scary in those early years.

Zoe Rothblatt  11:08

And yeah, just thinking about, you know, from the early years to like, I guess over the next few years, you would come to find the online community and really connect with other advocates and write and use art. Can you talk to us a little bit about what that part of your journey was, like, just like meeting others with these conditions and expressing yourself through these different forms?

Jae Walker  11:28

Well, I mean, overnight, my world got flipped upside down. I was taking naps in the middle of the day, I would work first shift and second shift from being a cashier and I was going through things that no one around me understood. And I always struggled because I always look younger than what I am. I always have. And so at the time, even though I was 34, I looked like I was in my 20s. And so even if I looked like I was in my 30s, it didn’t really matter because number one, people never think that you’re really sick.

Zoe Rothblatt  12:04

Yeah.

Jae Walker  12:05

Or that you’re old enough that you should have anything be wrong with you. And so if you actually open up and tell people about what’s wrong with you, because I had times where I had to use a cane, and I had times where I was so bad, I couldn’t like step up on a curb, there was one period of time where I started doing things off of a bucket list, because I was so bad. And my functionality was getting so bad, I thought I was going to end up in a wheelchair pretty soon. So, I started doing things like going to Six Flags, and doing all of this stuff that I didn’t think that I was going to be able to do in a year, you know, and so if I haven’t opened up and talk to people and tell people about what was going on with me, I always faced several reactions. And so I had to try to gauge people which of course is hard when you’re not good at reading faces.

Zoe Rothblatt  13:06

And when you’re just learning about this disease yourself, like you’re still like you said, figuring it all out, and you know what you can and can’t do. And there’s so much to learn about these diseases and you’re like responsible for learning that all yourself. And now you’re saying you’re also responsible for sharing that with other people, it’s tremendously hard.

Jae Walker  13:25

Yeah and you can’t do it all by yourself, you know, if you’re still working, and you need help with something like you need help reaching something, or leaning over or whatever it is that you need help with, you have to open up a little bit, because otherwise somebody’s going to be like, why do you need help with that? You look able bodied, you like you should be able to do that, like what’s wrong with you. And then they’re going to just think that you’re lazy, or you’re taking advantage of the people around you, which is the last thing that you need at work, right? And so then you have to deal with people several reactions, right? Either number one, people get so comfortable, and they don’t know how to talk to or deal with you because they don’t know how to deal with your pain. And so they don’t want to talk about it or they skip over, gloss over it and like they would just rather walk away from you and not deal with you. Right? Or you have you know, I’m in the South, or you get a lot of your bless your heart, people who feel sorry for you.

Jae Walker  14:39

And as someone who has been independent, extremely independent their whole life, the last thing I have ever wanted is for somebody to feel sorry for me. You never want somebody to feel sorry for you. You don’t tell people because you want them to feel sorry for you. You just explain because hey, this is why I need your help and when you do this for me, it’s a genuine need and I really appreciate that you’re doing it for me. That’s it, A plus B equals C. That’s all there is to it and instead, you get people who feel so sorry for you. They can’t think of you in any other way, except for pity, and that’s terrible.

Zoe Rothblatt  14:39

Yeah.

Zoe Rothblatt  15:20

Yeah.

Jae Walker  15:20

They can’t treat you like a normal person.

Zoe Rothblatt  15:23

Yeah, you’re like, I’m a person first not a disease.

Jae Walker  15:27

And you don’t become anything but that disease. And then like, anytime you’re around them oh, you poor thing. How are you feeling today? Are you okay? Aw, you poor little? Like, I’ve even had people go, oh, honey, are you doing? Okay? Did you know that, in the early years oh, did you know that she has? Like, I’ve had people tell my business, yeah. Like, it’s been bad before, you know.

Zoe Rothblatt  15:51

Yeah.

Jae Walker  15:52

And every once in a while, you’ll have somebody who’s just genuine and like, you know, they’ll truly be kind. They’ve had somebody in their family who has had an autoimmune, you know, someone who genuinely is trying to learn, you have somebody who’s a good person. They’re amazing, you know, and those are few and far between.

Zoe Rothblatt  16:10

I know you’ve had a few more diagnoses in the last few years. And you know, we talked a little bit about, you know, moving from patient to a zebra, can you talk to you about like how you knew something was wrong? And it wasn’t just the rheumatoid arthritis? You know, like, what made you think there could be something else going on here? And like, how did you get to the point where you’re getting these diagnoses?

Jae Walker  16:33

Well, so I was first diagnosed with RA back in 2011. Like at the end of September, and then in January, early January 2012, I got diagnosed with fibromyalgia. That was my second diagnosis. But I don’t ever remember not hurting that way. So I really just think the diagnosis came later, I think, yeah, they were pretty much simultaneous. And, you know, of hypothyroidism like all of this stuff. Well, I’ve actually gone back and looked at my artwork because I started, I reached out to CreakyJoints back in 2015, because it was super lonely for me not having anybody around me. I started blogging for CreakyJoints and it was a huge way for me to connect with other patients. And I started blogging about my experiences, and I started noticing symptoms that I was having and my problem is anytime I have symptoms, I have doctors who say to me, oh, well, that’s just like your RA.

Jae Walker  17:37

Or, oh, that’s just this, or that’s just that, and they just chalk it up. Or my favorite one is, well, why do you want another diagnosis, the treatment is just still going to be the same as what you’re doing right now. I literally can’t tell you how many times I have been told that actually, within the last four years,

Zoe Rothblatt  17:37

Yeah.

Jae Walker  17:38

That’s crazy also, because I mean, we’re studying new treatments, there could be a new treatment down the line that you need that ticket of a diagnosis to get it.

Jae Walker  18:01

That’s right and having more than one autoimmune disease actually opens you up to complications, which is actually what I have. So, I actually have small fiber polyneuropathy. Which means, polyneuropathy means I actually have it all over my body. So my small fibers, or have been demyelinating from the inflammation in my body. I have large fiber neuropathy, as well, but it’s not as advanced and it has come from the inflammation in my body. And I actually wanted to spend time talking to you about this on the show, because of several reasons. What I have is a very high risk. Most of the time, my neurologist who I see a neuromuscular neurologist, not just a regular neurologist, it’s those who have lupus and Sjogren’s are the ones who have the highest risk of developing it, although you can develop it from rheumatoid arthritis. And I was most recently diagnosed with Sjogren’s and I had undiagnosed Sjogren’s that went on for years because doctors didn’t listen to me and didn’t believe that there was anything wrong with me. I started having nerve symptoms that nobody would believe that there was anything wrong with me. And so small fiber neuropathy has all kinds of symptoms, and it crosses over with fibromyalgia, and it is believed that up to 40 percent of the people who are diagnosed with fibromyalgia actually have small fiber neuropathy, but there’s not enough information out there and not enough doctors are trained and have enough knowledge about small fiber neuropathy. So, small fiber neuropathy is a nerve disease and they usually they call it like the sock and glove, because you’ll feel it in glove and sock formation, right? Like you’re wearing gloves and socks. It started very much so with burning in my feet and I got to the point where I now been in the dead of winter, like I can almost never wear socks. And it doesn’t matter how cold it is, because the burning pain in my feet is so bad. I can’t tolerate anything on the tops of my feet. So, any kind of shoes that I have, they have to have, like it’s open on the top, and I can only wear them for like maybe two hours at the most, and I can’t tolerate anything tight on my skin. If I do, it’ll start to cause pain flare in my skin and that’s where it is the allodynia. So, a lot of fibro patients will know about this, right? It’s the skin pain, and it’ll cause it all over my body. And so in 2014, 2015 one of my pieces of artwork that I did shows that I had it and I didn’t know that I had it, I drew this piece of artwork because I went to a job interview, I went outside, I went to step down off the stairs and I missed a step, the step down my ankle rolled and I fell and I landed with my foot underneath me, I got up I walked in and I went back to work and my ankle and leg started to swell up. Now I was concerned with breaking something, right? If you have to have surgery, you have to come up with your medication and it’s a big deal for me because my body overcomes medication like very easily. And surgery is a huge fear of mine because of having to come off the medication and stuff. And so I went to the ER to try to get an X-ray to make sure everything was okay. I was in so much pain, so much pain. Of course they treated me like a drug seeker I was really mad and I told them I don’t want your drugs. You just freaking X-ray my leg and then they calmed down. So they X-rayed it said nothing was wrong, but they gave me a boot. And it went of course from my toes all the way up my calf up to my knee and they said I needed to wear it for like four days to support my ankle and my leg to give it strength and make sure I was okay and I had to wear a tight.

Zoe Rothblatt  22:39

And that set off your symptoms, of the SFN?

Jae Walker  22:42

Yes and it’s the tightness started to squeeze and it started to set off an all over nerve flare in my body. And the longest I could tolerate it was three days. By the third day I kid you not I was swearing at my partner, I was ready to punch everybody who was near me and I had to take it off. And like he was like, you can’t take this off the nurses, the doctors, the hospital said you have to wear this for four days. And I said like through gritted teeth, and I was like you do not understand me if I keep this on. I’m going to stab you with something sharp. You have no idea how much pain this is in. And the next 24 hours, I had electrical shooting pain through my foot and all the way up my leg.

Zoe Rothblatt  23:37

Oh my gosh.

Jae Walker  23:38

And that’s the nerve pain that I was having.

Zoe Rothblatt  23:41

And it took how many years later until you actually got the diagnosis?

Jae Walker  23:46

Well, it took me seven years to get my diagnosis. The only person who believed me and pushed me and kept sending me back to my regular neurologist to get tested was my nurse practitioner at my pain management doctor. I kept telling her about my symptoms and they kept getting worse and the whole diagnosis of Raynaud is a symptom. My heart arrhythmia, I have a form of dysautonomia called IST and I have SVT. Both of those are a symptom of my small fiber polyneuropathy.

Zoe Rothblatt  24:21

It’s like all of the puzzle pieces just came together.

Jae Walker  24:25

Yeah, they did. I mean, I had to wear a Holter monitor for like a month, my heart would race and race. I have so many specialists at this point. And I would talk to other peoplem, it started with talking to other patients asking them if they were having these problems. Nobody else was having this burning pain, but mine wasn’t limited. I have these random numb spots all over my body. Like when my neurologist, when I go in to see her she will have me like turn away and not look and she’ll break like tongue depressor or like something else, where it’ll have kind of like a point on it, I’ll turn. And it’s kind of scares me sometimes because she’ll use the pointy spot to kind of press in different parts of my body, and I will be able to feel it and then two inches later on my body, I won’t feel it at all.

Zoe Rothblatt  25:19

So scary, yeah.

Jae Walker  25:20

Yeah, that part of me is totally numb.

Zoe Rothblatt  25:22

You know, I’m noticing the time, I feel like we could talk about your story for hours and hours. But, I’m wondering if maybe you could leave us with what’s your advice for other patients who you know, similar to you have symptoms that are unanswered? Like, what’s your advice now, having gone through this journey, potentially more journey to go through, what would you tell other patients?

Jae Walker  25:44

Okay, yeah, so I have several things. Number one, get a physical copy of your medical records. Keep that on hand with you. Number two, keep a physical record of your symptoms, okay? Don’t try to remember it. Because you won’t, right? We have good and bad days. So don’t put that onus on yourself. Just don’t stress yourself out like that, keep that record on you. Okay, try to keep like dates, and all that kind of stuff. But even if you can’t keep that just write down your symptoms and keep a running tally of your symptom, okay? That really, really helps. And number three, find that one good friend, who is always going to bolster you up when you get discouraged, and who’s going to always have your back and who’s going to support you and say, I believe you. And there’s nothing wrong with you saying these things because you know your own body. Just because a test says there’s nothing wrong doesn’t mean there’s nothing wrong with you. We are our own best advocates, and we have to live with our bodies. It’s us and the doctors don’t live with this, we do. So, don’t give up, just don’t give up.

Zoe Rothblatt  27:01

I just got the chills. It’s so true. It’s like having the mental courage to keep seeking answers is so hard and having just one person believe in you can make such a difference.

Jae Walker  27:13

Yeah.

Zoe Rothblatt  27:14

Thank you so much for joining and sharing your story. Yeah, I really appreciate it and all the wisdom for our audience Thank you, Jae.

Jae Walker  27:21

No, of course it’s my pleasure.

Zoe Rothblatt  27:24

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 hit that subscribe button wherever you listen, I’m Zoe Rothblatt. We’ll see you next time.

Narrator  27:42

Be inspired and 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, Associate 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’ll continue our discussion from a few episodes ago on recent measles outbreaks, focused on Florida’s response. But as always, we have a few news updates first.

Steven Newmark  00:38

Yeah, so the first thing I think we should discuss is Prescription Drug Advisory Boards, which is something that we had spoken about in the past, we did a special episode dedicated to it and its impact on patients. And in the last few weeks, we’ve had the opportunity to speak directly to some of these boards are one in Colorado and another in Oregon. And we essentially inserted the patient voice on these boards. And we’ll talk more about this in the coming weeks as we continue to speak out on what these boards are doing and their potential impact for patients.

Zoe Rothblatt  01:07

Yeah and these are new, like we talked about them a few episodes ago did a deeper dive on exactly everything you need to know about and what we know so far. So, we’re still I guess, learning as we advocate, but the important thing is that we’re getting the patient voice in front of these advisory boards.

Steven Newmark  01:22

Absolutely and I’ll just say anecdotally, without taking a deep dive on it, on the subject right now. I had the opportunity to speak to the Colorado Board and I was very dismayed that the discussion amongst the board members for about an hour and a half before I had a chance to speak did not discuss much of the patient impact and certainly did not discuss affordability as it concerns patients themselves. I had prepared remarks ready to go and I essentially when it was my turn to speak, I said, I’m not even going to use my prepared remarks. I want to address what you guys are talking about, how you just have ignored patients in all these discussions and deliberations, you’ve created straw individuals who are not actual patients. And the idea of pulling a stable patient off of medication has real world impacts that are not being taken into account and was somewhat depressing, but also exhilarating, as we sometimes say it is good to advocate. If for nothing else, there’s a mental health boost to being able to speak up for yourself and for patients like you.

Zoe Rothblatt  02:18

For sure. I’m glad you were there and able to bring in the patient voice that’s kind of scary that they were ignoring all those things at first when talking about medications that are for patients. It’s so frustrating, right?

Steven Newmark  02:29

Yeah, totally frustrating. Totally frustrating.

Zoe Rothblatt  02:31

Well, we do have a few more news items. So, you had sent me this earlier this week and it really surprised me. But, the Washington Post recently reported how tax records are revealing that four major nonprofits capitalized on COVID misinformation and profited off of it, which is like terrifying.

Steven Newmark  02:48

Yeah, it’s amazing that there was an expose in The Washington Post that uncovered that there were four nonprofits, two of whom were really raking in the 10s of millions of dollars, between 2020 and 2022, 10s of millions of dollars with high salaries to their executives, and so forth, all of a tax deductible. And you know, so essentially, with the, if you will, the endorsement of the US government to be a nonprofit and spread misinformation about COVID. You know, this is 2020-2021, these are crucial times during the pandemic and to spread dangerous information is hurtful if nothing else, but to also be able to consider themselves a nonprofit, not pay taxes on their income is just horrific to say the least.

Zoe Rothblatt  03:31

Yeah, when you think about this misinformation is putting people’s lives at risk and damaging public health.

Steven Newmark  03:36

Totally.

Zoe Rothblatt  03:37

And you’re like profiting off of putting people’s lives at risk. It’s beyond terrifying.

Steven Newmark  03:42

Terrifying, terrifying. Maybe we’ll do a deeper dive on that as well. In the coming weeks. There’s a lot more coming to light about some of these nonprofits and what they were spreading. So maybe we’ll put a pin on it there and maybe revisit it.

Zoe Rothblatt  03:53

Sure. Our next bit of news, our colleague, Robert authored a report with IQVIA. And they were looking at flu vaccines among Medicaid fee for service patients and the link between pharmacy reimbursement and the goal was better to understand you know, what our vaccine rates compared to how pharmacists are compensated for giving vaccines and they found that basically, so, to quote one of the researchers a $13 increase in pharmacy reimbursement for adult flu vaccination was associated with a nearly 6% point surge in the state vaccination rate for Medicaid fee for service covered adults. So, basically what that saying is that as pharmacists are reimbursed at a higher rate, the vaccination rate for Medicaid goes up, which obviously we want because we want people to get vaccinated.

Steven Newmark  04:42

Interesting. That’s some interesting findings.

Zoe Rothblatt  04:44

So currently, pharmacy reimbursement averages around $12 for this group, which is considerably lower than Medicare’s $30. So, it’s interesting to see this stuff and how it could inform policy to help expand pharmacist ability to vaccinate and get compensated for it.

Steven Newmark  05:02

Yeah, in other news, norovirus cases are surging in the United States, especially in the northeast and western states.

Zoe Rothblatt  05:08

Yeah, I mean, this is nothing new. It’s something that we’ve seen before and peaks during winter months. It is very contagious, so be careful out there. It’s like a stomach flu that causes severe diarrhea and vomiting. There’s no medication you could take for it as far as I know. So it’s really just taking care of yourself and hydrating.

Steven Newmark  05:27

All right, well, I’ll wash my hands. Oh wait, I already do wash my hands.

Zoe Rothblatt  05:30

Sanitize those surfaces.

Steven Newmark  05:32

Oh my gosh. Well, speaking of viruses and surges our south eastern most state Florida is seeing measles and apparently not exactly mobilizing the most robust response to tamp down. Let’s get into that.

Zoe Rothblatt  05:45

Yeah, we talked about this a few episodes ago, the rise in measles and just the history of it, like how it was eliminated from the US why we’re seeing cases now. Along with Florida, measles has been reported in 11 other states this year, which is kind of scary, you know, we’re both vaccinated, so we’re good. But when you hear of a disease that’s been eliminated is now floating around, you have to wonder why.

Steven Newmark  06:09

Right, right. Well, the answer why is simple because you said, we’re vaccinated, but not everyone is.

Zoe Rothblatt  06:16

Yeah.

Steven Newmark  06:16

So you know, let’s talk about the response in Florida and why it may not be the most prudent according to some public health experts. So, the Florida Surgeon General Joseph Ladapo, sent parents a letter granting them permission to send unvaccinated children to school amid the outbreak. Now, obviously, if your unvaccinated do not have the vaccine for measles, when there’s a measles outbreak currently transpiring in your county, it’s probably wise to stay home.

Zoe Rothblatt  06:42

Yeah and this completely contradicts guidance from CDC and just like well established public health guidance that says if you’re unvaccinated stay home because of how contagious the measles is. So, why are we seeing a response that says, oh, it’s up to the parents to say whether the kids can go to school?

Steven Newmark  06:58

Right and, you know, the vaccine itself, by the way, is extremely safe. It’s been around for a while. Listen to the stat from Kaiser Family Foundation, a person is four times as likely to die, four times as likely to die from being struck by lightning during their lifetime in the United States, as they have a potentially life threatening allergic reaction to the measles, mumps and rubella vaccine.

Zoe Rothblatt  07:16

Okay, we should almost have a video portion for this because jaws are dropped like your four times as likely to die being struck by lightning than have a life threatening reaction to the vaccine. That’s like beyond shocking and just proves how safe it is.

Steven Newmark  07:32

Yeah. Anyway, the CDC reported that child immunization rates have hit a 10 year low. Last year record number of parents across the United States filed for exemptions from school vaccine requirements on religious or philosophical grounds.

Zoe Rothblatt  07:43

Let’s just pause for a second. I’m so curious to ask you as a parent, what would you do if this was happening in your kids school? And you got a letter saying it’s up to the parents to decide if the kids go in, like, how would you feel if you were in this situation?

Steven Newmark  07:57

I don’t know. You put me on the spot.

Zoe Rothblatt  07:58

I know.

Steven Newmark  07:59

I mean, my kids are vaccinated, so I feel comofrted. It’s a strong vaccine. You know, we talked about the COVID and flu vaccines, like oh, they prevent hospitalizations, and they tamp down the effects of the virus. The measles vaccine actually prevents the virus very strongly. I don’t have the numbers in front of me, but it’s a strong vaccine. I don’t know the answer off the top of my head, I think I would do the basic things call my pediatrician. What do you think? Call the principal like what the hell? Can we take a week off at least and see, you know, see what’s what. And ultimately I probably would strongly considering pulling my kids for a week just to see how it goes to see if it spreads more or to see if it’s tamp down. But I don’t know that’s off the top of my head. I don’t know.

Zoe Rothblatt  08:38

Isn’t it also typically the local county health department or, you know, more local public health figures that respond to these crises, not like the Surgeon General of the State?

Steven Newmark  08:48

I don’t think it’s unusual for it to come from the state health department to be honest. But yeah, that’s a good point. All right. We googled, it turns out that the Surgeon General or Florida as the title given to the head of the Florida State Health Department, most states use the moniker Commissioner, I don’t know why they use a different moniker. That being said, that being said, it is positioned when you head the health department you’re entrusted with public health, and you’re doing something that seems to be an opposite of that mission by giving a permission structure for parents to send unvaccinated children into a place where measles may be present.

Zoe Rothblatt  09:19

So, let’s take a look at what are like the vaccine rates for measles in Florida like what are we even talking about here?

Steven Newmark  09:27

Okay.

Zoe Rothblatt  09:27

So only about a quarter of Florida’s counties had reached the 95 percent threshold which communities are considered well protected against measles, according to most recent data from the Florida Health Department in 2022. And in Broward County, where six cases of measles have been reported over the past week, about 92 percent of children in kindergarten had received routine immunizations, and that remaining 8 percent is more than 1,500 kids who had vaccine exemptions. I know it sounds like a high number 92 percent but it’s like a huge drop totally to go like below that threshold.

Steven Newmark  10:05

Right, that’s a difference that allows for the spread, essentially.

Zoe Rothblatt  10:08

Yeah. And we’re seeing that.

Steven Newmark  10:09

Right, exactly. We’re seeing that, and we’re seeing it in the absence of any effort to curtail that spread, as best as I can tell, doesn’t seem to be an effort to say, hey, there’s X amount of cases. Let’s stop it there. Let’s not go beyond this. Right?

Zoe Rothblatt  10:22

For sure. I mean, like, the reason we have public health guidance is so that in times like this, we can follow it. Like I don’t know why we’re reinventing the rules and going against the science.

Steven Newmark  10:32

Everything’s political.

Zoe Rothblatt  10:33

And it’s almost like we forgot the trauma of the pandemic we just went through, like we just went through COVID and quarantine and everything and it’s like so quickly, people forget how you know, like precious our health is and how we really do need to stick to public health guidance in the face of these viruses.

Steven Newmark  10:51

Right, no, it’s unfortunate to say the least. I mean, vaccine mandates have been used for measles. In 1991, Philadelphia’s Deputy Health Commissioner ordered children to get vaccinated against their parents wishes during an outbreak. In 2019, there was a large measles outbreak among Orthodox Jewish communities in Brooklyn. And the New York City Health Commissioner mandated that anyone who lived, work, or went to school in these neighborhoods get vaccinated or face a fine of $1,000.

Zoe Rothblatt  11:15

And these are both for measles, but you know, I mean, this is like a classic public health 101. I remember the first public health class we’re talking about Jacobson V. Massachusetts, which was about smallpox, and the Court upheld the state’s authority to impose the vaccine because it put public health at risk and public health was more important than individual rights in this case.

Steven Newmark  11:36

I was just gonna go back to the standard moniker that we’ve spoken about before, you know, everyone has individual rights to do what they want, but you don’t have a right to trample on my rights or other’s rights and causing a public health scare tramples on my rights. You have a right to drink as much as you want alcohol to your own body, but you don’t have a right to get into a car and drive and put my life at danger due to that. So, there are, you know, public health laws exist for a reason it’s to protect the public health, if you will.

Zoe Rothblatt  12:03

Especially, our community who is immunocompromised may not have gotten all their shots because of their health, or you know, you have a weakened immune system so the shot may not be as robust of a response in your body as it is for a classic healthy person. And that’s why we get vaccinated to protect each other.

Steven Newmark  12:21

Exactly, you have a right to do whatever you want. But there are public health like you know, your right to drive a car, you don’t have a right to speed because you don’t want to kill somebody or get into an accident with somebody else who’s riding on that road. You know, laws exist for the betterment of society and enable us all to live our best lives, if you will.

Zoe Rothblatt  12:37

And I guess one last note to leave this on, there are laws that we advocate for that reduce the ability for people to do these like philosophical and religious exemptions.

Steven Newmark  12:48

right.

Zoe Rothblatt  12:48

Just obviously, like a medical exemption is a different story. But we do advocate at the state level, many states have passed laws like this that help ensure that our communities are vaccinated. Right.

Steven Newmark  12:59

Like, for example, you shouldn’t really be able to say I don’t want to get vaccinated because of the microchips that Bill Gates is putting into vaccines and tracking me as a reason. Just an example.

Zoe Rothblatt  13:09

Just a minor example there.

Steven Newmark  13:11

That’s my favorite of the conspiracies, by the way, because if you ever look at a vial of a vaccine before you get the shot…

Zoe Rothblatt  13:17

Well look at the needle. How would you… Like the needle is so tiny.

Steven Newmark  13:22

Somehow, somehow, Bill Gates has invented a microchip that is smaller and can fit inside incredible.

Steven Newmark  13:30

All right. Well, let’s talk about our learnings today. You know, I guess I’ve learned that the more things change, the more they stay the same when it comes to vaccine hesitancy and here we are 2024, Florida, measles, and you Zoe?

Zoe Rothblatt  13:42

And my learning is just from the top of the episode about the Prescription Drug Advisory Boards, how important is that we’re showing up and sharing the patient voice there.

Steven Newmark  13:51

Yes, absolutely. 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  14:00

And if you have any questions, comments, episode topics, email us at [email protected] 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 that rating, write a review, and hit that subscribe button. I’m Zoe Rothblatt.

Steven Newmark  14:19

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

Narrator  14:25

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, Director of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothblatt, Associate 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’ll talk about the recent rumblings and rumors about new CDC guidance about COVID isolation. But as usual, we have a few news updates.

Steven Newmark  00:37

Let’s get into it.

Zoe Rothblatt  00:39

So first, we have that more than two million people have been dropped from Medicaid in Texas. That’s a lot of people.

Steven Newmark  00:46

That is quite a lot of people. Yeah. So that’s unfortunate folks who had Medicaid and able to obtain medications able to visit doctors as a result of being on Medicaid. We’ve talked about this in the past, there were a pandemic policies that expanded Medicaid coverage, and many of those were lifted at the end of the emergency. So people are getting dropped from the Medicaid rolls.

Zoe Rothblatt  01:06

And the two million in Texas is actually the most out of any state losing coverage in a year. And just to put things in perspective, Houston’s population is 2.3 million. So that’s basically like an entire city losing coverage.

Steven Newmark  01:20

Yeah, well, you know, in Texas, they go big.

Zoe Rothblatt  01:22

Yeah.

Steven Newmark  01:23

That’s how they roll down in Texas. So, not surprised that it’s the most of any state losing coverage. It’s a large state. But yeah, it’s quite a number. And, you know, hopefully, the folks who have lost coverage are able to find some affordable plans through the exchanges or other means.

Zoe Rothblatt  01:37

And just something really unfortunate in all of this, like over half of the people that were disenrolled was because of procedural issues, like failing to return paperwork, it wasn’t always necessarily because they were ineligible. Like some people, like you said lost it because of the end of the emergency but others like…

Steven Newmark  01:54

Right.

Zoe Rothblatt  01:54

They didn’t get the notification. And it’s such a shame to lose coverage over something like that.

Steven Newmark  01:59

Oh, my gosh, so over a million people in the state of Texas have lost health care coverage due to procedural issues. And now a million people no longer have health insurance.

Zoe Rothblatt  02:09

Especially in a digital age, like 2024, how are we not making it simpler for people to renew their Medicaid?

Steven Newmark  02:15

Totally, totally. We got to look into that more. Let’s go down to Texas and figure out what’s going on. That’s not right. That’s all I can say. I wish I had more.

Zoe Rothblatt  02:22

Same I wish I had more to but I do have more news, we have a quick poll. So we did a quick poll on clinical trials. And you know, just a little bit of background on clinical trials. They help researchers study the safety of new medical, test devices, and treatments, and their effects on people. You know, clinical trials, of course, you can opt into them, you can decide to join, and there’s different roles for each one. But, we really wanted to know like what our chronic illness community is thinking about clinical trials. So we did a quick poll with our Patient Support Program. And are you ready for the results?

Steven Newmark  02:56

I’m ready.

Zoe Rothblatt  02:57

So a little over 2,000 people responded, and 68 percent said that they had not participated in a clinical trial.

Steven Newmark  03:04

Wow, I’m actually surprised how many have, so just by the reverse of that 32 percent have participated. So, almost a third. Interesting.

Zoe Rothblatt  03:12

I know that surprised me, too. Have you ever like talked to your doctor about clinical trials?

Steven Newmark  03:16

No.

Zoe Rothblatt  03:17

Or been offered one?

Steven Newmark  03:17

No, no, no, no, I frankly, I don’t know anyone personally, who has ever done a clinical trial or been asked about it.

Zoe Rothblatt  03:22

Same for me. So in the poll, we ask what are the most common reasons that people have not participated and like us, 55 percent said they never received information, 28 percent said they were never eligible, and 20 percent worried about a medical issue or side effects from a new medication or treatment with the trial.

Steven Newmark  03:41

Wow, what would help make people feel more interested, for example?

Zoe Rothblatt  03:45

So, yeah, we asked that too. And people were able to select all that apply some of the most common answers: 70 percent said knowing the risks of the side effects or medical issues, 68 percent said knowing more about the medication or treatment, 63 percent said knowing how the trial will affect my current treatment plan, 55 percent said knowing that my doctor supports it, and another popular one, 53 percent said knowing the time commitment.

Steven Newmark  04:12

Wow. Again, I’m surprised 55 percent knowing the doctor supports it. For me, I feel like just on a personal level, my doctor says something I’m like, yeah, okay, as long as she’s behind it, or he’s behind it.

Zoe Rothblatt  04:13

I know, like 100 perent I want to know my doctors supporting.

Steven Newmark  04:26

Yeah.

Zoe Rothblatt  04:27

Yeah.

Steven Newmark  04:28

I’m like, alright, if the doc’s in, im in.

Zoe Rothblatt  04:29

Yeah.

Steven Newmark  04:30

Let’s do it.

Zoe Rothblatt  04:31

I know. I’m like, I don’t want to do it unless my doctor’s involved in it.

Steven Newmark  04:34

Totally, and supports it, and supports it. If the doctor is like, well, I don’t know about this. I’m like, alright, that’s it. I’m done.

Zoe Rothblatt  04:40

But yeah, these are some good things to think about, like questions to ask your doctor. You know, if you’re thinking about a clinical trial, just like I thought those were great points, like…

Steven Newmark  04:49

Totally.

Zoe Rothblatt  04:50

How is it gonna affect your current treatment plan? What does your doctor think? What’s the time commitment? Like all great questions about clinical trials.

Steven Newmark  04:57

Yeah, absolutely. Thanks to our team for putting the together. All right, well, let’s talk about this new potential, shall we say CDC isolation guidance. Last week, the Washington Post released a story that the CDC is considering replacing the COVID five day isolation period guidance with, quote, “staying home until 24 hours fever free and improving symptoms” end quote, as the isolation guidance.

Zoe Rothblatt  05:20

So, this has not come out yet, which is so confusing. I’ve seen so many articles on this and for a minute, I thought the guidance was changed, but…

Steven Newmark  05:28

Right, right, right.

Zoe Rothblatt  05:29

This is just a leak. And we don’t really know what the CDC is thinking about. They haven’t made any comment, right?

Steven Newmark  05:34

No, they have not commented, you really have to get to the second paragraph in these articles to even know that it was a leak, not an official statement from the CDC. But yeah, someone leaked this to the Washington Post. So, you know, let’s talk about things that we know about COVID. So first and foremost, you know, if you’re contagious, you’re contagious, that’s not changing. And certainly the CDC knows that if you’re infected, you still spread COVID-19 to others for as long as 12 days even. So, regardless of whether there’s a change in protocol or not, it’s important to be safe. And also to protect others. If you have COVID and find yourself going out there, make sure you mask up to protect others.

Zoe Rothblatt  06:09

And just thinking about getting COVID testing, like testing is not what it used to be like…

Steven Newmark  06:14

Right, right.

Zoe Rothblatt  06:14

I don’t think we’ve got in a free set of tests since the summer, maybe. I can’t even remember. So, that just says how long ago it was. And it’s kind of expensive, like, yeah, they cost like $30. Like, if you’re worried, it’s not just easy to be like, let me just do a test to do a test like it adds up.

Steven Newmark  06:31

Right, there was a time when it was so easy to hoard tests. You know, anytime you had a sniffle, or scratchy throat, you could just start swabbing yourself. And then if you did eventually test positive, you’re like, alright, now I know and I could stay home. With the cost of tests rising and their accessibility and not quite as prevalent, it’s highly likely I don’t have any facts to back this up, I’m sure it is the case that many fewer Americans have home tests and those that do have fewer sets of home tests available. So, they’re more valuable, and they’re less likely to use them as quite as often. So, as a result, you’re more likely to get people perhaps experiencing early symptoms such as a feel that it’s a cold or something not to be worried about when in fact it is COVID are still going out there.

Zoe Rothblatt  07:09

Also, this is just a little aside but I wanted to take a test recently, and it was so confusing to find the expiration date on the box, like I couldn’t understand when it was shipped out or if that was the expiration, the timing wasn’t adding up. It wasn’t so clear. And I just think we need clear labeling on these boxes, too.

Steven Newmark  07:29

Yeah, that’s a great point.

Zoe Rothblatt  07:30

And I was like, ugh, do I just throw this out and buy a new one. And it’s so expensive. But obviously, like we know the importance of testing and making sure you’re not contagious. So…

Zoe Rothblatt  07:38

Yeah.

Zoe Rothblatt  07:39

Like I guess I’ll be safe and get the new test.

Steven Newmark  07:41

Another factor, the number of paid sick days for Americans is abysmal. Only 23 percent of Americans have zero, zero paid sick leave and among those who do have it, the average American has only 10 days of paid sick.

Zoe Rothblatt  07:52

Yeah, this is terrible. You could use like the 10 sick days in one go, like from one illness.

Steven Newmark  07:58

Absolutely. With COVID. Yeah, for sure. Especially if you have a preexisting condition, such as an autoimmune condition.

Zoe Rothblatt  08:04

For sure. I mean, also just like sick days, you know, you may have to take them for your kids, you may not be sick, your kid may be sick, or let’s say run through your family like your kid is sick, then you’re sick. Ten days is just simply not enough. Aside from like the personal impact of how challenging it is to work when you’re sick, like we talk about it all the time, it’s just really not cool to go out knowing that you’re sick and contagious and spreading it to people.

Steven Newmark  08:26

It’s totally not cool, yeah. And you know, you may think ah, this doesn’t affect me, I don’t know, I work from home, or I don’t really care. But the truth is, it affects everyone, like you may think it doesn’t affect you until you know your waiter at your fancy steakhouse that you go to shows up with flu symptoms, and he’s spreading his germs to you and your and your loved one over there. It affects us all when people go to work that they’re ill.

Zoe Rothblatt  08:46

Yeah, well, let’s talk about I don’t know, it’s like the state of COVID generally. Like we’re not in this emergency, we’re not really calling it a pandemic anymore, but it still feels like more of a threat than the flu, to me.

Steven Newmark  08:58

For sure.

Zoe Rothblatt  08:58

Maybe that’s like a little bit of the trauma that we’ve lived the past few years.

Steven Newmark  09:03

Yeah, we don’t know, we still you know, we still don’t know the long term effects. There’s still long COVID which is a whole separate discussion on that we don’t need to get into this virus has only been around for five years now. You know, four and a half years.

Zoe Rothblatt  09:13

So let’s look at the numbers a little bit like hospitalizations are going down, which is good. According to the CDC, emergency department visits were down 11 percent In the most recent week, and hospitalizations were down 10 percent, deaths down six percent. All that’s like really great to see, especially during this winter time. But on the flip side, like vaccine rates are also really lagging only 17 percent of the total US population receive the updated booster and this is compared to the 69 percent of the total US population had finished their primary series. So, it’s like there’s a huge group of people that got the first vaccine and now just aren’t getting the boosters.

Steven Newmark  09:52

Yeah, I know we need Travis Kelce to do another commercial for that one because those numbers are I was gonna say abysmal. I already use that word today but those numbers is a pretty poor.

Zoe Rothblatt  10:00

Maybe we need him and Taylor together getting their boosters.

Steven Newmark  10:05

That’s like too much firepower. Let’s hold back on that for next time we need to go inside, she’ll she’ll be the one to tell us. She’s the only one Americans will listen to. And like I said I mentioned long COVID but there’s still a lot to learn. The Biden administration has dedicated an additional $515 million to a major initiative to study long COVID, which is a dice increase. The NIH that have the funding would be used to test additional treatments in clinical trials to study the effects on each part of the body. So hopefully we’ll learn more about long COVID, but right now, it’s still like, uh huh, we still don’t know like you said it, COVID is still should be scary. Not freak out scary, but I think it’s definitely higher plane of scariness than the flu. Right?

Zoe Rothblatt  10:44

I think so. Yeah, and I mean, our community who lives with chronic illness definitely, like feels the seriousness of all of it, like COVID, flu, RSV, but I think there’s something like unique about COVID in that, like, exactly what we’re saying, we don’t have a lot of the answers. There’s a lot we don’t know. And the guidance has been changing a lot. Whereas something like the flu, like we’ve had guidance in place that we’re accustomed to.

Steven Newmark  11:07

Right.

Zoe Rothblatt  11:08

And whenever we hear a new thing for COVID, it’s a little bit of like, wait, what? And then…

Steven Newmark  11:12

Yeah.

Zoe Rothblatt  11:13

Now the CDC hasn’t in recent months given guidance specific to immunocompromised people. So, it’s also a little challenging when general guidance comes out and people who are immunocompromised because of their condition, or the medications they take don’t really know how applicable it is to them.

Steven Newmark  11:29

Yeah, no, absolutely, absolutely. And not to compare flu and COVID again, but flu has been around for 100 years, that’s very different, and flu seasonal. So, you kind of know, you know, when to expect it, when to ramp up your personal safety procedures, if nothing else. But getting back to the guidance. So, some of the things about the guidance, the leak guidance, if you will, that we don’t know, is number one masks, if they’re gonna change the guidance, or, you know, make it less restrictive, if you will, is there gonna be new masking guidance to go along with that? I mean, if folks are going to return to action, while still contagious with this, you know, is the CDC also going to recommend that they at least mask for that period?

Zoe Rothblatt  12:02

Yeah, I just don’t know what the likelihood of people masking is honestly.

Steven Newmark  12:06

Right. I guess it’s not going to happen. And then the the other thing you mentioned the immunocompromised and also elderly folks, is there anything special for these folks? How are you gonna protect immunocompromised individuals if more folks are walking around while contagious?

Zoe Rothblatt  12:18

I also saw rumblings that I don’t know if this is true or not. But there is a meeting on February 28, where the CDC is expected to talk about COVID shots, so maybe we’ll get information then. But I saw rumblings that the CDC is considering another updated COVID vaccine like this 2023-2024 shot to recommend another shot of that for people who are immunocompromised this spring.

Steven Newmark  12:41

Wow, and then of course, the big issues. Does any of this actually matter? How many people look to the CDC guidance and say, okay, that’s what I’m gonna follow. You know, so is this going to really impact transmission rates?

Zoe Rothblatt  12:52

I have this feeling that no, like, I feel like the general public has just moved on. Like, we talked about that a lot. And…

Zoe Rothblatt  12:59

Like they’ve moved on, and they make decisions like based on how they feel. And then our community what we just said, like, doesn’t feel so included in the guidance. So, while we want to look to the CDC and follow like, it also feels like it’s missing a little bit.

Steven Newmark  12:59

Yeah.

Steven Newmark  13:12

Yeah, no, absolutely. Anecdotally, I find that people use the CDC as a way to get back to work or send their kids back to school quicker. They’ll say, oh, we had our five daysm that’s what the CDC says, so, we’re good to get back to work. So, if the CDC shortens that I get the sense that some of these folks who rely, quote unquote, rely on the CDC for allowing them to get back into the world, if anything, use this. And I know this is a small subset of people who actually pay attention to this stuff, but it’ll be used as their excuse to get back even sooner. Like oh, no, there’s no five days anymore, I’m fine. So, I’m okay to get back, that’s what the CDC said.

Zoe Rothblatt  13:44

Kinda crazy. I know people that I just remembered this. I can’t believe I didn’t think about it earlier when we’re talking about the sick leave, but I know people that have said to their work, oh, I have COVID and they’re like, okay, so just throw in a mask and come in.

Steven Newmark  13:56

Wow.

Zoe Rothblatt  13:56

Which is just crazy to be that careless with it. I just can’t believe that.

Steven Newmark  14:01

Wow. Wow. I don’t know what to say.

Zoe Rothblatt  14:03

By the way, also, we’re talking about with immunocompromised, it’s like we’re at risk for more severe illness like many people who are immunocompromised, but a lot of people also forget that when you’re sick, you often have to delay your regular medications.

Steven Newmark  14:17

Right. Good point. Very good point. Very, very, very good point. Yeah.

Zoe Rothblatt  14:21

So like, that’s what makes me the most upset.

Steven Newmark  14:23

Totally.

Zoe Rothblatt  14:23

Because I always check in with my doctor and she says, yes, skip this dose or continue when you feel better.

Steven Newmark  14:29

Right.

Zoe Rothblatt  14:29

And then it’s like, not only am I sick, but now my arthritis and Crohn’s is acting up and it’s everything.

Steven Newmark  14:35

Totally. That’s a good point.

Zoe Rothblatt  14:37

Once again, our episode is turned into a giant vent session, but like sometimes it’s so needed.

Steven Newmark  14:40

That’s okay. Anyway, let’s see what the CDC says and I suppose the only thing you can do, I shouldn’t say the only thing you can do that sounds depressing, but always advocate on behalf of yourself. Talk to your employer about your condition, and see what kind of accommodations can be made. If you’re going into an office setting, hopefully there have been upgrades in the HVAC systems You can always mask yourself but of course, living in the real world, not everybody works in an office number one. Number two, living in the real world, there are people who may have bosses who might be judgmental about folks who are wearing masks. Unfortunately, that’s the real world, you know. So, tread carefully, I suppose is the best we can do.

Zoe Rothblatt  15:18

Yeah.

Steven Newmark  15:18

But advocate, advocate for sure.

Steven Newmark  15:20

Yeah, I know it can be scary and intimidating when it seems like everyone’s moved on. And…

Steven Newmark  15:25

Yeah.

Zoe Rothblatt  15:25

But like it’s your health and like, try to do what makes you feel most comfortable. All right, Steven, what did you learn today?

Steven Newmark  15:33

I learned a lot about the quick poll regarding clinical trials. I thought that was really interesting. How many folks have not been approached, I think that you and I anecdotally said, we’ve not been approached either. And I think that certainly shows that there’s a large cadre of patients out there who could be approached, I certainly would be interested, if there’s a new therapy on the horizon that might be beneficial, I would want to I would want to get him in line for that. So hopefully, something can be done to change that.

Zoe Rothblatt  15:58

Yeah, those results really surprised me too. But also, it was just good chatting with you clearing up some of this, like what we know and don’t know about COVID and the new guidance that may or may not be coming out.

Steven Newmark  16:09

Yeah, 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  16:18

And if you have any questions, comments, episode topics, just want to say hi, you could email us at [email protected]. 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 hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  16:38

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

Narrator  16:44

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, Associate 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 make informed decisions to live your best life.

Zoe Rothblatt 00:28
And today we’re joined by Sarah Shaw, Senior Manager of BIPOC, that’s Black, Indigenous, People of Color, Outreach at GHLF. And she’s here to talk about Black History Month things with us and get into the health disparities of it all and what we can do to help raise the voices in communities of color. But first, we do have a few news updates.

Steven Newmark 00:48
Yes, so this week, we’re early February, the opening offers on Medicare price negotiations are beginning. This stems from the Inflation Reduction Act, which passed Congress and was signed into law in late 2022. And the US Department of Health and Human Services, HHS, through its Centers for Medicare and Medicaid Services, CMS, sent initial offers to the participating drug companies of the first 10 prescription drugs selected for negotiation in the first cycle of the Medicare drug price negotiation program. That was a mouthful.

Zoe Rothblatt 01:20
Yeah, well, this is kind of like the first key step after they announced the 10 drugs. I don’t think anything has happened yet, really. So this is the first step in actually getting to that negotiated price, right?

Steven Newmark 01:31
Correct. So the negotiations have begun, so each drugmaker now has until early March to accept the offer or to propose a counteroffer to the government. And then a series of negotiation sessions could follow with the process set to conclude by August.

Zoe Rothblatt 01:45
And then once the price is agreed upon, it’ll take place in 2026.

Steven Newmark 01:49
Correct, which is, by my calculations two years away. So two years, and we’ve still yet to see how this is going to impact the prices that patients themselves directly pay. So, well we’ll see.

Zoe Rothblatt 02:02
That’s really important to stay on the lookout for.

Steven Newmark 02:05
Yes, another important issue is the Supreme Court has agreed to take up a case on COVID misinformation.

Zoe Rothblatt 02:11
We’ve talked a lot about the misinformation on social media during COVID. Whether it was about vaccine safety, mask effectiveness, COVID’s origins and the shutdowns that happened, and Biden officials had urged platforms to pull down post and delete accounts and amplify correct information. And now the Supreme Court is going to decide if that violated first amendment rights.

Steven Newmark 02:34
Yeah, fascinating to watch. I’m a lawyer and I’d say it’s difficult to go to law school without having some kind of an interest at least if not an affinity for the First Amendment. Those cases were always a little more interesting than your contract law classes. So, this is a big First Amendment case.

Zoe Rothblatt 02:49
So, just from that perspective, Steven, what do you think is likely to come out of this?

Steven Newmark 02:54
I’m gonna play it very lawyerly.

Zoe Rothblatt 02:56
I knew that was coming.

Steven Newmark 02:57
Actually, no in true ignorance, though, I honestly I’ve not read the filings. So I don’t want to miss state anything. I’ll tell you this. I promise to do the research and read, but you know, it is interesting. There’s a balancing act there’s not an unlimited right to free speech. As we all know, you can’t yell fire in a crowded movie theater, is probably the most prominent example of that. Government has a compelling interest in curtailing certain forms of speech and when public health is involved, we’re talking about misinformation. There’s also the issue, it gets even trickier because these social media sites are not necessarily the ones that are posting it’s individuals who are posting onto these social media sites some of the misleading information, I say, misleading, you know, let’s let’s be a little more real and say outright lies about vaccine safety, etc.

Zoe Rothblatt 03:44
Well, regardless of what the outcome is, it will, though have major implications for what role that public health officials can play in the spreading of information on social media.

Steven Newmark 03:55
Totally. By the way, we should mention the case is called Murthy vs. Missour and it alleges that federal officials coerced social media and search engine giants like Facebook, Twitter, YouTube and Google to remove or to downgrade posts that question vaccine safety, COVID’s origins, or shutdown measures. And the Department of Justice lawyers argue that officials made the request but never actually forced the companies to do this.

Zoe Rothblatt 04:19
Well, as we said, arguments are set to come March. so next month. So, looks like we have some updates soon.

Steven Newmark 04:25
Yeah and my nerdy lawyerlyness is definitely excited. I’ll say that much. But let’s move on to our topic of the day, an important topic for us here at GHLF. We spend a lot of time talking about health equity, and also the interplay of race and public health outcomes. And it’s February is Black History Month, so we’re excited to bring on Sarah and talk a little bit about some of the work that we are doing at GHLF and some of the importance of Black History Month generally even outside of GHLF.

Zoe Rothblatt 04:55
Yeah, welcome back, Sarah. It’s been a while since we’ve had you on but our listeners should remember you because you’ve been here before. How are you?

Sarah Shaw 05:02
Yeah, it feels like I’ve stepped into a home again, coming back. I always enjoy talking with you and Steven about anything that’s going on, so honored to be here today.

Zoe Rothblatt 05:12
So, why don’t you take a minute if we have any new listeners to introduce yourself and your role at GHLF.

Sarah Shaw 05:18
Sure, so my name is Sarah. I’m the BIPOC Community Outreach Manager at GHLF. A lot of what I do centers and amplifies the voices of BIPOC patients within our communities, making sure that they have a megaphone to get their experiences and needs kind of heard throughout all the work that we do the various projects. I also am a person that lives with a few chronic illnesses myself, such as migraine, and I help run patient councils and I’m involved in a lot of work regarding to asthma, IBD, dermatology, cancer, and migraine, and arthritis as well. So, happy to be here on the show.

Zoe Rothblatt 05:55
And I think you just highlighted something really important about just mentioning all the diseases and the fact that these issues span across diseases. A lot of what we’re going to talk about today with health disparities and racism and healthcare and social determinants of health, it’s not just one disease, it really does span across the patient journey.

Sarah Shaw 06:14
Absolutely. It’s something that I think in terms of I’m talking about the black community, we already know that there are health disparities in terms of just in general BIPOC patients going to the doctor not having trust in the system. And so having these conversations and having us dedicate time to health equity is what’s going to help bridge that gap to ensure that it’s equitable across all communities, not just BIPOC, but just in general. So, it’s really important the work that we’re doing and hoping that it impacts patients in a positive way.

Steven Newmark 06:47
Can you give our listeners some examples of the burden of chronic disease and its disproportionate impact on the black community?

Sarah Shaw 06:55
Absolutely. This is a really good question. I know I can start off with COVID. You know, when 2020 hit, it was a hard time across all patient communities. But it especially hit really hard for black and brown communities. I think the statistic was black and brown communities were hit three times more with COVID illnesses versus their white counterparts. And I think a lot of the marketing that was done to kind of help that in terms of engaging people to go get vaccinated to help those disparities, but it is still an ongoing process. I think a couple other things that come to mind is regarding dermatology, specifically psoriasis and eczema present differently on darker skin tones. And so for the patients that we work with, that have darker skin tones, black or brown communities, there’s been a lot of misdiagnosis for them. Their chronic pain or chronic illness journey takes much longer to get a diagnosis. So doctors specifically have not been trained to recognize the differences of what psoriasis or eczema looks like on darker skin. So it’s just a matter of implementing that in medical school to have examples, to have people show that. Because I think back to a patient that we work with very well she’s a wonderful woman, Diane Talbert, and her story specifically of having to, trying to get a diagnosis for years of where people just thought she was contagious, when in fact we know psoriasis is not contagious. It’s an autoimmune disease inside the body, but it took her a very long time to get a diagnosis. Those two things are front of mind and then cancer as well. Cancer, lupus, and sickle cell it definitely affects black communities a lot harder than our white counterparts.

Zoe Rothblatt 06:58
Sarah, it’s interesting you bring up about how psoriasis appears differently on skin of color, I actually was just reading and I put it in our outline here this research study published in Arthritis Care and Research and it was about fixing the education gap for assessing lesions in lupus patients of color. And like you mentioned, black patients have a three to five fold increase of incidence of lupus verses our white patients, but they’re often completely absent from training materials in medical school or residency, doctors are just not seeing what these lesions look like on patients of color exactly as you said. So, to address this, a group of researchers had created this interactive tool that included over 100 images from patients of color. And following the training module, there was a significant improvement among providers in being able to identify these lesions among patients, and they surveyed them and they were able to describe the rashes, and they were much more confident in diagnosing the patients. And it’s just wild to me that something as simple as including images can really make such a difference for improving that time to diagnosis, improving access to treatments because the sooner you’re diagnosed, the sooner you’re getting on treatments, and that there’s just really simple ways we can address this like systemic racism that’s in our health care system.

Sarah Shaw 09:47
Absolutely. Even some things that are very old school still being taught in medical school, black skin is thicker than white skin. We know that that is not accurate, but until we can have that corrected from the beginning to when we’re bringing people in to training to be doctors, to be physicians, to be nurses, that it needs to be autocorrected from the beginning so that the stereotypes are not implemented. And speaking of like medical school, an article that I wrote with which I’ll drop at the end is I found that in the US, specifically, only 5.7 percent of doctors are black. And this is important for me to bring up in general just because of the mistrust that the black community has in healthcare in general, being able to see a doctor that reflects like your background, your ethnicity, is a huge way to help bridge those healthcare disparities, they’re more likely to go to the doctor if they see someone that looks like them. And just seeing that number be so low is a reason why we still have these disparities. So everything that we can do to make medical school and just different things that are related to health care more diverse is going to help fix those problems.

Zoe Rothblatt 10:56
And can you talk about in your journey you mentioned you have migraine and other chronic diseases, did you have trouble finding a provider of color? What was it like when you found one? Has it been helpful? Like tell us everything about that? Or give us a synopsis because we could probably do another 10 episodes on that.

Sarah Shaw 11:12
I’ll try and do the abridged version, I ramble, but I will try my best to keep it centered. So I appreciate you asking me that Zoe, because I did not have a very good relationship with healthcare when I was younger or growing up. There was a lot that happened where I was told I was making things up, it was all on my head. When I was younger, oh, these are just growing pains, she’s doing this for attention. I just have to say something here, I’m also a transracial adoptee, so I was raised in a white family. And so I had my dad when I was younger advocating along there with me and when he unfortunately passed away, that’s when I started to notice a lot more mistreatment in terms of specifically with migraine. There was certain comments made to me about how oh, you don’t cry like my other patients when they’re getting injections, or where am I going to find all your head under all this hair when I was when I was getting injections.

Steven Newmark 12:06
Oh my gosh.

Sarah Shaw 12:07
For migraine treatment and it’s just for me, I didn’t speak up. And I think I was so early on in my patient journey that I didn’t know that, like I could have a voice and those doctor’s appointments. And so for me, I left I moved away, I specifically dedicated a lot of time and energy to find providers that looked like me. And it took a while it’s not easy. And I also have to say I have a lot of privilege, I have good health care and I know some people are in these deserts in America, not literal deserts, where they have to travel very, very far to find doctors that look like them and sometimes they have to just work with what they have. For me in my situation, I have a car, I have a partner who can drive me to my appointments that are about an hour and a half away. And that’s where I see my queer and black neurologist, who I have a wonderful relationship with, we have good back and forth in terms of shared decision-making when it comes to my disease. And then in terms of mental health, I think it’s so important because we know mental health is something that impacts the entire patient community, specifically the black community, we need more mental health tools and resources. And for me, it was very important where I had therapists in the past that were white, there were just certain things that couldn’t be addressed in terms of racism, or chronic pain. And I was very intentional in my search, I think two and a half years ago, I think I’ve been seeing my therapist for two years. And it’s made a world of difference of just having someone who understands where you feel safe and can go about when we code switch and stuff like that. And it’s made a tremendous impact on not just my physical health, but my mental health of not having to worry, am I going to get shot down by another doctor? Or am I gonna have to deal with a microaggression at the doctor’s office and those are just two examples. And that’s honestly what I want for all patients in general, I want them to have wonderful relationships with their doctors, with their physicians, because not going to the doctor when you have a chronic illness, it’s tough and it will make us sicker if we can’t put our health first. And I’ll end it really soon. I think another caveat for a lot of BIPOC patients is not having time to prioritize our health where usually a lot of other things come first ,family, raising kids, juggling multiple jobs, and not having accessible hours for patients to be able to take time, whether it’s the morning, whether it’s on the weekend, whether it’s late at night, I do know that I’ve spoken with quite a few black patients where they’re like, I don’t have the time because I don’t have a flexible schedule to be able to go to the doctor. And then another access issue too is you know, affordability for treatments. And I think that was a big part of my journey. But also I got to a point where I was like, I need to make this better not just for me, but for all patients and so that’s why I do what I do here.

Steven Newmark 12:27
Yeah, that’s very well said I’m just thinking out loud. It’s what you’re saying, a lot of it is it’s tough to say it like this, but it’s just the act of doing it on the individual level. I mean, first of all, we’re talking about so many things. And I’m putting aside the systemic racism in healthcare and putting aside some of the social determinants of health for now, but talking specifically about the access issues that you’re describing, and I’m going to even put aside the global access issues to talk on the individual level. Just the act of getting yourself to the doctor, advocating for yourself, advocating to try and find a provider that has hours that you can get to in your care, advocating to obtain needed health insurance, whether it’s Medicaid or private insurance through an employer or through the Affordable Care Act exchanges. It’s daunting to say the least, but I think the three of us can agree that the more you do it, the less daunting it becomes. Is that a fair, I hope that’s a fair statement, right, which is the one advantage those of us, the three of us who are chronically ill have is that unfortunately, we have experience going into doctor’s offices. I don’t know I have a degree in navigating the healthcare system, whatever that degree is.

Sarah Shaw 16:01
The ups and downs of the ins and outs that able bodied people don’t understand until it happens to them. Even me before I was diagnosed with chronic migraine and endometriosis. It was an eye opener into how our healthcare system works and all of the access issues that are riddled throughout. And I think we’re moving the needle forward. But there’s always more to do.

Steven Newmark 16:22
Yeah, yeah. And I’m sorry to be so pessimistic but I’m being realistic and saying there’s no one that’s ever going to be a better advocate for your own health care than you are, or a potentially a loved one who, you know, has helped take control. But let’s talk about more on the global scales, reducing disparities and looking to a brighter future that when we have you back on the podcast in 10 years, in 20 years. How are we going to get there? How are we going to reduce these disparities?

Sarah Shaw 16:45
My first and foremost thing is together, together. I think a lot of burden falls on patients and you’re right, Steven, sometimes the best advocate for your health is you. You know your body inside and out. But I do think that there are ways that medical schools, physicians, patient advocacy organizations like ours, who are able to represent and amplify and center patient voices that typically do not get heard and sharing that back with pharmaceutical companies to make sure that the patient voice is embedded through every aspect of what we’re doing. I know there’s also a talk about clinical trials, making sure that there’s diverse patients in clinical trials. And it’s just going to take a group effort, and I think we’re on the right page. But my equitable future dream is just all of us working together to make sure no person is not getting health care due to access issues. That’s my dream.

Steven Newmark 17:39
I think just to bounce off that it’s important to be an advocate for yourself. Once you have attained that level of being able to advocate for yourself or as a caregiver for a loved one, the next step is to advocate for others, and which is what we do here and what all of our patients, and our particular 50-State Network patients do, is to advocate for a better world.

Sarah Shaw 17:57
You mentioned caregivers, I have to give a shout out to my partner Tara, who comes with me on almost every single one of my doctor’s appointments for that extra support and remembering things that I forget. Just having that extra support to know that you’re not advocating alone is a lot, or even having you prep with your loved one or partner before you go to your appointment is effective. That’s all I wanted to say about that.

Zoe Rothblatt 18:19
And I was just going to add that, of course we do awareness all year long, but having a month like Black History Month really provides a dedicated time where you can go and listen and learn about people’s stories. And then think about ways you can get involved like Steven and Sarah are saying and advocate. But I think it’s really a great opportunity to just sometimes take a step back and learn and hear what conversations are happening outside of your traditional community and go on social media and see what people are talking about. Send this podcast to a friend, hear what Sarah has to say. I think it’s really important, especially as a privileged, cisgendered white person to just like sit back and listen to the voices of the community.

Sarah Shaw 18:59
And what you said is very powerful Zoe, I think with Black History Month in terms of what it means to me, it’s a time for our allies to to listen and not center themselves, like during these conversations where it’s sometimes very vulnerable for us to share and be open because some of these things involve medical trauma, medical PTSD, and listening and then offering how can I help you? Whether that’s just as simple as you said, sharing their articles sharing, their podcast story, offering other layers of support. But Black History Month is also it’s a time to look back, but it’s also a time to reflect and celebrate Black excellence, Black joy. I know for some black people, it’s a history that’s ingrained in the US. but there’s also this joy that comes out of seeing achievements, seeing our Black patient advocates celebrated, not just in February throughout the entirety of the year and it’s a really, I don’t know, magical month, I think for a lot of us so I appreciate that we can talk about these discussions and figure out ways to continue to help not just black patients, but all patients.

Zoe Rothblatt 20:03
Well, one last fun question for you, Sarah, before you go, are there any traditions you partake in during this month, restaurants you visit, special dishes you make? Yeah, we’d love to hear from you about that.

Sarah Shaw 20:14
No, that’s a fun question. It’s funny, Tara and I were talking about that just last week. I’m like, hey, it’s Black History Month, like, I want to get some African food and like, it’s just simple things like that like honoring and putting money towards like black owned businesses, whether that’s small Etsy shops or restaurants just being able to do that is a solid way to support the black community who put so much love and energy into whether the outfits that they make, the jewelry that they make, the food that they make. And it’s a way for me to stay connected to my culture and it’s a fun tradition that we started and I love it.

Steven Newmark 20:49
That’s fantastic. All right. Well, this has been great. Thank you so much, Sarah, for taking the time. There’s a lot of work to be done. But it’s great that we’re working towards it. And like I said, if we were around 50 years, I hope that we can look back and talk about the improvements but certainly in shorter increments than that.

Sarah Shaw 21:05
Thank you. Thank you, Steven and Zoe for having me on the podcast. And just one thing I wanted to mention in regards to what we’re doing at GHLF for Black History Month is we have a page that’s going up that was updated last year, that’s going to be updated qlso throughout the month. It’s ghlf.org/black-history-month and that’s where you can find a lot of patient stories, a lot of articles, a lot of podcasts that are centering black voices throughout the month and throughout the rest of the year.

Zoe Rothblatt 21:35
And we’ll put that in the show notes, so everyone can find it. And if you’re curious about any of the resources we mentioned during today’s episode, check out the show notes, all the links will be there. But yeah, thank you, Sarah, so much for coming on and sharing your story and sharing the experiences of the community. Like you mentioned, it’s not always easy to do so because it brings up a lot but it’s of course important to do so. So thank you so much.

Steven Newmark 21:57
Yeah, thank you.

Sarah Shaw 21:58
Thank you.

Zoe Rothblatt 22:01
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. I’m Zoe Rothblatt.

Steven Newmark 22:14
I’m Steven Newmark. We’ll see you next time.

Narrator 22:19
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  00:06

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, Director of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

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

Steven Newmark  00:22

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  00:28

So Steven, last week, Corey co-hosted with me and we talked a lot about policy and advocacy for 2024, the usual stuff like step therapy and copay accumulators, but a big topic that came up was these Prescription Drug Advisory Boards or PDABs for short, and we thought it would be good, you know, you and me to devote an episode to it after reflecting more on that.

Steven Newmark  00:49

Yeah, absolutely. This is a somewhat new phenomenon, these Prescription Drug Advisory Boards, and their overarching aim, if you will, is to take a look at prescription drugs generally at the state level and to impose some price controls over some of these trucks.

Zoe Rothblatt  01:04

So, maybe we could take a step back and talk about health care costs being high in general.

Steven Newmark  01:10

Yes.

Zoe Rothblatt  01:11

Kaiser Family Foundation always puts out really good data on this. And I found some that was published on their site end of last year. So are you ready for this?

Steven Newmark  01:20

Yeah.

Zoe Rothblatt  01:20

About half of US adults say it’s difficult to afford health care costs, and one in four say that they are a family member and their households had problems for paying for health care in the last 12 months.

Zoe Rothblatt  01:31

Yeah, that’s right, Steven. One in four adults said that they skipped and that also can lead to higher costs later on. Because when you delay unnecessary care, like it could end up in a more devastating way nd you could end up in the ER and…

Steven Newmark  01:31

Yeah, so one in four put off paying for health care in the past 12 months. Interesting. I presume it includes skipping or postponing getting health care that they needed because of the cost.

Zoe Rothblatt  01:53

Yeah.

Zoe Rothblatt  01:53

You know, we always talk about preventative and early care is really important, obviously, for your health, but also for keeping costs down.

Steven Newmark  02:00

Yeah. But I am just curious, when they do surveys on high costs, is there anything that people would respond to and say, no, those costs are not high. I feel like when asked people will say yeah, restaurants are expensive. Yeah, food costs are high. Yeah, car costs are high. Yeah, gasoline costs are like, I’m just curious, like, when do people say that something is not expensive?

Zoe Rothblatt  02:19

That’s a good point. And my thought is like that there’s some good data in here about what we just said that they’re skipping or postponing care. Or like this next stat about one in five adults say they haven’t filled a prescription. So yeah, I can complain that my health care is expensive. But me, Zoe, is still paying for it. I’ve never forgone care, fortunately, because of the price. But in here, it shows that people are actually foregoing the care. So I think that’s like the nuance there that we could say it’s not just complaining.

Steven Newmark  02:51

Totally and I apologize for sounding glib, there is a difference with health care and other items. When it comes to costs. Health care is necessary, of course, or it directly affects your health and your ability to live your life. So there’s a difference. I was more like poking fun, I guess the survey, if you will.

Zoe Rothblatt  03:08

Yeah, like who’s gonna be like, I love the price of my drug.

Steven Newmark  03:11

Yeah, I know. I know.

Zoe Rothblatt  03:13

So yeah, about one in five adults said they’ve not filled a prescription because of costs.

Steven Newmark  03:18

Okay.

Zoe Rothblatt  03:18

One in 10 said they’ve cut pills in half or skipped doses of medicine in the last year because of cost.

Steven Newmark  03:24

I’ve done that. Not in the last year. But I’ve done that. Yes.

Zoe Rothblatt  03:27

Really?

Steven Newmark  03:27

Back in my younger days.

Zoe Rothblatt  03:28

Steven, you’ve got to take it as your doctor prescribes, you can’t be cutting pills.

Steven Newmark  03:34

Well, when I was in law school, finances were tight. What can I say? That’s all I’ll say about that, I guess.

Zoe Rothblatt  03:38

And then all this is to say is that even if you have health care insurance costs can still be a burden, right? So this isn’t just like uninsured people that are paying ridiculous amounts. This is also people on health insurance. The last stat I have here is about four in 10 insured adults worry about affording their monthly health insurance premium, and 48 percent worry about affording their deductible before their health insurance kicks in. That’s a lot of stress. You know?

Steven Newmark  04:06

Absolutely. It’s very stressful. And not to put too fine a point on it. But when you have a chronic condition, I’m sure that gets even magnified even more because you’re taking prescription drugs likely for life.

Zoe Rothblatt  04:16

Yeah, chronic condition equals chronically paying.

Steven Newmark  04:20

Right, so that fear is I would say almost always omnipresent. Even if it abates a little bit here and there and you’re in a financial position to pay for something or you have an insurance carrier that enables you to pay there is always that fear of when that could get cut off at some point or costs can rise. So yeah, that is an ever present concern.

Steven Newmark  04:37

So, what do we do about it? In come these PDABs.

Steven Newmark  04:41

So, Prescription Drug Advisory Boards were designed as a way to help lower drug prices at the state level. They are created through state legislation and are small boards appointed by the governor or legislators. The goal is to reduce government and commercial market spending on prescription drugs to increase affordability.

Zoe Rothblatt  04:58

So how do they do this? How can this group of appointed people just come in and lower the price of drugs?

Steven Newmark  05:05

Right. So, what they do is they conduct what are called affordability reviews, or they assess if a prescription drug cost is too high for patients and insurers to afford and they try to understand what prices are being charged for certain treatments, and then they make recommendations to the legislature on ways to lower government spending on prescription drugs.

Zoe Rothblatt  05:25

Okay, so I’m just wondering why now, like, I know drug prices are high, we just went through the data, but…

Steven Newmark  05:32

Right.

Zoe Rothblatt  05:32

What kind of kick started these PDABs?

Steven Newmark  05:35

Why is 2024 to the year of Prescription Drug Advisory boards?

Zoe Rothblatt  05:38

Yeah, it’s like the night of Passover, I have the four questions.

Steven Newmark  05:41

Right.

Zoe Rothblatt  05:41

Why now? How do they do it? What drugs? Let’s break it all down.

Steven Newmark  05:46

Well, why now? I guess the overarching answer to that is that policymakers are always looking for ways to cut costs throughout the state. And they are particularly interested in cutting costs on prescription drugs, it’s a very salient issue, it gets a lot of media attention, more so than cutting costs in other areas, perhaps. So it’s something that’s always top of mind, if you will, for state policymakers and federal policymakers, for that matter. Specifically, in 2024, the interests of the state level, it really kicked off because of what happened at the federal level with the inflation Reduction Act. And the Inflation Reduction Act included a provision, as you may recall, for federal drug price negotiations, Medicare drug price negotiations.

Zoe Rothblatt  06:23

Oh, right. Yeah.

Steven Newmark  06:24

Yes.

Zoe Rothblatt  06:25

Back in August, we talked about the first ten drugs, right?

Steven Newmark  06:28

Exactly. So, in August, CMS announced that the first ten drugs that will be up for negotiation, and the prices will become effective in 2026. So that kind of kick started the idea to do something similar at the state level.

Zoe Rothblatt  06:41

So how do we know what drugs get reviewed? We just mentioned that CMS announced the ten drugs, was there some announcement among the states? How do we know what’s going on?

Steven Newmark  06:50

Well, every state is different. I mean, it seems to be coming fast and furious. And there are 50 states and it looks like already on the books, including in late 2023, at least a half a dozen that I could think of between November and this upcoming spring with more probably coming on the way. In each state, it varies, each board specifically varies how it selects the prescription drugs that they want to review. And if a board determines that a drug is unaffordable in their terms, it can take a variety of steps depending on their degree of authority granted to them by their state legislature, including making recommendations to the legislature on ways to lower drug spending, potentially, they might have the power to negotiate how much a state pays a manufacturer for a prescription drug, or they could set what are called upper payment limits, which are caps on what is the will specifically spend on a prescription drug?

Zoe Rothblatt  07:37

And do we know like how long this would take to go into effect. I know for federally, those first ten drugs are going to happen in 2026. So it’s like a little ways away. So I assume patients can expect any price changes so quickly?

Steven Newmark  07:50

You know, at the state level, the laws could be different, the way that they’re written by again by the legislature and rules could be implemented in a much more rapid fashion than at the federal level.

Zoe Rothblatt  08:00

Very cool. Okay, so we’ll keep our patients updated as we see what these boards decide.

Steven Newmark  08:05

Yes, but I do want to highlight that these boards may not be the panacea that they appear to be.

Zoe Rothblatt  08:10

Oh, tell us more?

Steven Newmark  08:12

Well, first and foremost, these boards are made up of individuals selected as you said by the legislature or the governor, they’re not made up of patients. So they don’t necessarily have the patient perspective in mind when discussing you know how to formulate these drugs and the impact it’s going to have on patients, they tend to be health economic professionals or other healthcare professionals. But that’s why we do what we do is to get involved and insert the patient voice where possible.

Zoe Rothblatt  08:37

Exactly, because at the end of the day, these are decisions being made for patients that will impact patients who are taking these drugs. So we ought to have the patient perspective.

Steven Newmark  08:47

Absolutely

Zoe Rothblatt  08:47

In these meetings in order to decide what is the right price for patients

Steven Newmark  08:52

Exactly. You know, first and foremost, if there are going to be savings they need to go to the patient. If the patient’s not going to see the savings, we want to ensure that a patient is not going to have a reduction in access to medications that you’re taking. You know, we were talking about costs earlier and costs are a factor but another factor is actual access to medications. You need to take your drugs to stay healthy and again not to go back to this well but when you have a chronic condition it is absolutely critical to stay current with your medications.

Zoe Rothblatt  09:20

For sure. And I even had just in the new year like insurance can reset and things aren’t like all lined up and for my biologic for like a day or two I thought I was on the line for $5,000 and I was freaking out. I didn’t have a supply in my fridge. I didn’t want to miss my meds.

Steven Newmark  09:38

Oh man.

Zoe Rothblatt  09:38

There’s no way I’m paying $5,000. I called the specialty pharmacy. They helped, they got the manufacturer copay assistance payment and thank God for that. But..

Steven Newmark  09:47

Wow.

Zoe Rothblatt  09:48

It’s scary out there with these meds. You know?

Steven Newmark  09:50

I know.

Zoe Rothblatt  09:51

And I’m educated I work in healthcare and I knew something was wrong.

Steven Newmark  09:55

Yeah.

Zoe Rothblatt  09:56

And there’s no way I’m going to be on the line for this but there’s so many people that just what know what to do in that scenario.

Steven Newmark  10:02

Healthcare is so intimidating. The thing I would say is, I think it is very natural to be intimidated when dealing with monetary situations in which you are a somewhat of a novice or not an expert, and very few people are experts when it comes to health care. I am very fortunate I understand health care similar to you, this is what we do. It’s not fun, but I know how to get my health care paid for and how to fight and how to call the insurance companies and be patient and press the right buttons on the phone and when to like speak to the right person, and all that kind of stuff, and how to advocate for myself. But there are places in this world where I’m not comfortable. I had an issue with my car and I don’t have a level of comfort when trying to get my car fixed, for example. I don’t know how, I’m not familiar with that world, I’m not a car person, and it’s very intimidating. And it opened my eyes to what it must be like for so many people who encountered the health care system, what they must deal with when trying to deal with financial issues from healthcare providers, from drug manufacturers, from local pharmacies.

Zoe Rothblatt  11:00

And I feel like you just nailed it there at the end. There’s so many stakeholders in healthcare too. You just said the doctor’s office, the pharmacy, there’s the hospital, the health insurance, there’s so many things sometimes you don’t even know who to call first, or where to go and…

Steven Newmark  11:14

Right.

Zoe Rothblatt  11:14

They’re all telling you different things, it’s so challenging,

Steven Newmark  11:17

It’s very challenging, it’s very challenging, but to bring it around, I think that our role in the healthcare ecosystem, if you will, is to ensure that patients have the voice and that the patient voice is not forgotten. Ultimately, all of this entire ecosystem is built around serving patients, whether it’s a hospital, a pharmacy, or a health insurance provider, Medicare, Medicaid, they’re all there because of the patient. And we as patient advocates have to make sure that the patient voice is heard and is felt by policymakers.

Zoe Rothblatt  11:47

One hundred percent. and for our listeners, if you’re curious about how you got involved in share your voice, Corey, in the last episode gave a really good breakdown of what states are active and with what medications and how to share your story. But the ultimate point he made was that whether you’re currently on the drug or have been on it, it’s really important just to share your story and your experience. It’s really like true to you and it’s not like some complicated policy thing you have to learn. You just have to share your experience.

Steven Newmark  12:15

Yeah, wow. Well said by Corey. Yeah, and that includes for these Prescription Drug Advisory Boards when they arise, we want to make sure our voices heard and we at GHLF will send out alerts to our list if you’re on our list about upcoming board meetings and ways to get involved and make sure that the patient voice gets heard in terms of your medications that you may be taking and the importance of retaining access to such medications.