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.

Zoe Rothblatt  12:41

On that note, Steven that brings us to the close of our show. Tell us one thing you learned about PDABs today?

Steven Newmark  12:47

Well, I guess the big thing is how prevalent they are becoming in 2024. It seems to be sort of the issue du jour at the state level. And it’s something that we will continue to watch and continue to insert our voice and dare I say, continue to need help from our patient advocates to insert in your voice.

Zoe Rothblatt  13:04

And I learned that it’s really different states and federally and between the states as well. So it’s important to keep an eye out for what each of them are putting out.

Zoe Rothblatt  13:13

Well, 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  13:21

And if you have any questions, comments, episode topics, just want to say hi to us, 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. If you like this episode, give us a rating, write a review and hit that subscribe button. I’m Zoe Rothblatt.

Steven Newmark  13:41

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

Narrator  13:47

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

Corey Greenblatt  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 the Global Healthy Living Foundation.

Corey Greenblatt  00:19

And I’m Corey Greenblatt, Associate Director of Policy and Advocacy at GHLF.

Zoe Rothblatt  00:22

Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. And just like you heard, I’m joined by Corey Greenblatt today to co-host and update us on all things advocacy and policy for 2024. So Corey, welcome back to The Health Advocates.

Corey Greenblatt  00:40

Thank you so much for having me, Zoe. Excited to talk to you and excited to talk about some state policy stuff going on this year.

Zoe Rothblatt  00:46

Me too. I feel like you’re our unofficial official fill in co host. So we appreciate you coming on.

Corey Greenblatt  00:52

I tell Steven all the time, I’m always happy to pitch it. It’s my pleasure.

Zoe Rothblatt  00:57

Awesome. Well, before we get into everything that you have to share with me and our listeners today, I just wanted to quickly talk about these quick poll results. So we often share here the results of these quick polls which are sent to our Patient Support Program and they’re on a variety of topics. This time it was about for people living with psoriasis about how satisfied they are with their treatment. And as I’m sure you know, Corey, there’s a bunch of different types of treatments for psoriasis, you could do things like topicals, or take more like systemic medication that’s a pill or injection. So we wanted to know, what was people’s experience with those and how do they feel about them? Sorry, ready to hear?

Corey Greenblatt  01:33

Yeah, let’s hear what they had to say.

Zoe Rothblatt  01:34

So, for the people that were currently taking a topical cream, such as a corticosteroid to treat their psoriasis, about half said that they were, and what was really interesting was that 55 percent were neutral or disagree that they were satisfied with that topicals ability to prevent or treat their condition. So that means like over half aren’t really feeling like it’s doing a great job.

Corey Greenblatt  01:58

That’s a lot higher than it should be if we’re being completely honest.

Zoe Rothblatt  02:01

But then there’s some good news, as the poll went on, we asked about a systemic medication, such as a pill injection, or infusion to treat psoriasis, and 65 percent said they’re taking one. And then when asked the same question about if they’re satisfied with their medications’ ability to prevent or treat the condition 74 percent agreed or strongly agreed with that. So, what this just told me was that if you’re not feeling satisfied with your treatment, talk to your doctor about it, there’s probably more options that you can try maybe something in this scenario, like a systemic medication is working on the whole body versus a topical just in the area you put it. So it just told me the importance of advocating for yourself and bringing up these concerns with your doctor.

Corey Greenblatt  02:43

Yeah, and I think one of the really great things that shows is for many things, many conditions, as you said, there are options, you’re not locked into a single option or treatment. And the more you communicate with your doctors, the more you have an open dialogue with your team to really kind of express what you like about your treatment, what you don’t like about your treatment, what you’re finding beneficial, what’s not beneficial, the more likely you can actually move to something that will impact you in a positive way. And that you will see a benefit from.

Zoe Rothblatt  03:12

Definitely, I really couldn’t agree more. And while we’re here, I can’t not plug it. As you know, we have a webinar coming up next week, Monday, January 29 at 4pm eastern time. This is part of our HEROES program, we did an episode about HEROES, maybe last season, we could stick it in the show notes along with the registration. But this is a webinar that brings together a bunch of stakeholders, a dermatologist, a patient, a hairstylist, a psychologist, and we’re really just talking a lot about exactly what you and I were just talking about, you know, managing your psoriasis in everyday life and at the doctor’s office and how you could bring together all these people to feel your best.

Corey Greenblatt  03:48

Yeah, I really recommend that everyone checks the link in the episode description, registers, and does whatever they can to take part in this webinar.

Zoe Rothblatt  03:58

Great. So, one month into 2024. Tell us what’s on the horizon for this year for our 50-State Network.

Corey Greenblatt  04:05

Yeah, this is going to be an interesting year from advocacy perspective. So in 2024, we are once again in a presidential election year that has a lot of implications for state government, state governments are on different sessions from the federal government, we talk about this, often. States’ governments have their own session length. So you can look at a state that has four weeks of a session like Oregon, where you need to really get your ducks in a row as quickly as possible, because they’re trying to get the work done as fast as possible. Or you look at a state like Massachusetts, which they’re in business all year long. They’re open the entire year, which gives us a long time to work on stuff but also means that there’s a lot of dead time in between. So there are positives and negatives to both but the good thing is, is that we have an opportunity to do some great work across the entire country in a number of different areas and really excited to possibly do that.

Zoe Rothblatt  04:54

So tell us about those areas. What are some of the target states or target issues that we’re looking at?

Corey Greenblatt  04:59

Yeah, so I’ve been here a couple times and going over the issues. So, I won’t dive into all of the issues as much, you can check out kind of previous updates and previous episodes we’ve done to break down things like copay accumulator adjusters and step therapy. But, generally speaking, a lot of what we’re doing this year still revolves around access issues. So things like step therapy, primarily this year, there are going to be efforts in New Jersey and Michigan. And we’re really excited, we think that there’s a chance to really do some great work there. But the big kind of policy this year, the thing we’re seeing in many states is going to once again be copay, accumulator adjusters. And this is something we’ve discussed at length in a number of different podcasts. It’s something that we have seen success at, at the state level through the last couple of years, but we’re continuing to start to really see some progress and getting more states covered under these laws. So before I go into my kind of Howard Dean like listing of the states, which is a nice 90s political reference for anyone who’s listening. The other issue area that I wanted to kind of bring up briefly is something called Prescription Drug Affordability Boards, or PDAB for short. And these are efforts by state governments to study certain drugs and evaluate them on a cost effectiveness basis to see if the state government can do something similar to what the federal government is doing with drug price negotiation and try to find a way to make medications more affordable at the state level for state employees, state government employees, health plans that are regulated by the state government. But so the thing we are seeing with regards to Prescription Drug Affordability Boards, or PDABs, for short, is that these are chances for patients to be able to share their experience with the state government review boards on what it’s like taking certain medications. So we had a chance last year to do this with some patients in Colorado, and we’re able to get them to share their experience taking things like Enbrel Stelara, and really got the ability to share with state regulators what it was like from a patient perspective to take these medications, to rely on these medications, utilize their copay assistance programs, and everything all in between there. And it was very valuable. And we’re excited to kind of get into it more so this year with more states.

Corey Greenblatt  05:25

And when patient share their stories to talk about how important this medication is, does that sort of then tell the PDABs to say this is important medication, we have to lower the price, like how is it all connected there?

Corey Greenblatt  07:27

It’s a really interesting question. So they’re not looking to kind of say this is really important, let’s make it as cheap as possible, because it has to come into a bit of a give and take. Say, you’re going to lower the price to $1, so this medication is a cheaper everyone in the state. Well, the manufacturer might say, I’m not going to sell it to patients in that state anymore, because I can’t profitably make any money on that, because you’re making me lose a significant amount of money. Now, we should not make healthcare decisions based solely on cost. And we should hold pharmaceutical companies and insurance companies to that same standard. That being said, that is not always the case. And so we have to ensure that there is a bit of a give and take. These companies are producing life saving medications, so we want them to continue to exist, continue to innovate, and continue to produce these medications, and we want them to be able to continue to give them to patients across the entire country. However, they’re still very expensive. So states are trying to figure out where that middle ground is for that line of what they can regulate. And that’s what these PDABs are trying to do. They’re trying to see what value they can kind of determine these drugs have on the patient’s lives. And if increasing or decreasing the threshold with which these pharmaceutical companies can charge will impact that value, they may try to do that. Or they might set non price thresholds on things, they’re really just trying to get a better understanding of what these drugs impact patients on a day to day basis do and what the financial aspect plays into that.

Zoe Rothblatt  08:56

And this is an interesting one for patients to get involved in. Because really all you have to do is talk about improved your quality of life vs something like maybe step therapy, I know we always say you don’t have to necessarily experience step therapy you could also tell your story. But there’s not like you had to experience something negative in order to advocate for this, you really could just talk about how much medication has helped you, which I think allows like an avenue for more patients to get involved in advocacy.

Corey Greenblatt  09:21

I couldn’t agree more. I think it’s a unique opportunity for advocacy with regards to these kinds of Prescription Drug Affordability Boards, because as you said, they just want to hear from patients. They don’t care if it’s positive or negative anything in between. They just want to hear what it was like for you to take these medications. And it doesn’t matter if you are currently on the medication. If you previously took it and had to switch off of it. All of those things are very important. So when we start to get into the states that are starting to look at these things, if you’re in one of these states, really keep in mind that this isn’t just something where you maybe have to go to a state house and spend all day in an advocacy day. This is something that by and large is virtual many of them to take place at local time, so you can be at the non work hours. So you can kind of take this from your home computer, share your story, and it cuts out a lot of the problems and things that come up with in person advocacy participation. And I think it’s a really interesting and exciting experience and opportunity.

Zoe Rothblatt  10:18

So which states have meetings on the horizon that patients can get involved in?

Corey Greenblatt  10:23

Yeah, so we’ll start with the PDAB issue, because we were just talking about that. So states that have already passed legislation regarding PDABs, and are now currently soliciting stories from patients, there are three of them. So Colorado, they started their listening sessions last year, and as of January 24, started to open up surveys for more responses. Today is the last day that the surveys for Enbrel and Genvoya are open, but they’re going to later in the spring, open up surveys, for Stelara and a couple other medications, we will of course, send out notices to everyone in all the patients in our networks. So if this is an issue that you are interested in, I highly recommend you sign up for the 50-State Network, CreakyJoints, the Patient Support Program, basically everything, just sign up for them all, to make sure that you get your notice. SO, Colorado is the one that is the furthest along. Oregon is another state that they have a virtual meeting in February. So next month, we will be participating. We encourage anyone who lives in Oregon to reach out and if you’re interested in sharing your story on a certain medications, we can share which medications they’re looking at. And if you’re able to share your story, it’s very simple to do so. And we’ll help you do that. And finally, Maryland is the other state that has already passed legislation and is now starting the implementation phase and starting to solicit patient stories. So if you’re in Colorado, Maryland, or Oregon, and you are interested in kind of talking to a Prescription Drug Affordability Board, keep this in mind, and there might be an opportunity for you to do so. Additionally, there are a couple of states that are looking at passing legislation that would allow them to do their own version of a Prescription Drug Affordability Board. So these are states that they aren’t looking for patient stories yet, but they very likely will be. So that’s Illinois, Michigan, Virginia, Connecticut, and Arizona. So these five states are in the process of passing their own version of legislation and looking at what the impact of prescription drugs have on their health system. And eventually, very soon, will likely be soliciting their own version of patient stories as well. So if you live in those five states or the previous three, and you are interested in sharing your own experience, taking certain medications, or curious what medications they’re looking at, please reach out to us at our advocacy team, the 50-State Network. And we really would love to find ways to work with you on these issues and get your story and your experience out there.

Zoe Rothblatt  12:45

Absolutely. You could always email us at [email protected]. And one of us will get back to you.

Corey Greenblatt  12:52

Yeah, for sure. And now finally, moving on to the big project, the major policy that we are seeing across the country copay accumulator adjusters, this is our bread and butter, this is the thing we have talked about for years and worked on for years had a lot of success at the states. And now we’re hoping to have some more. So the list of states that have current active legislation. So if you live in one of these states, these states have bills that you can support right now California, Massachusetts, Florida, Michigan, Missouri, New Hampshire, Ohio, Oregon, Rhode Island, Vermont, Wisconsin.

Zoe Rothblatt  13:25

Wow.

Corey Greenblatt  13:26

And just for all my Howard Dean fans out there, woo!

Corey Greenblatt  13:28

So, all of these states currently have bills that have numbers, some of them are and we’ll get into this in a little bit, some of them have hearings already scheduled. And there are also a number of states that have advocacy days already scheduled. So if you live in any of these states, there’s 11 states there. And again, going back to something that Zoe briefly mentioned, even if you haven’t experienced a copay accumulator, even if you haven’t experienced step therapy, your voice still matters. If you live in these states, you are a constituent, these legislators are literally paid by you to listen to you. It is their job to listen to you. So if you live in these states, and you care about these issues, whether you’ve experienced them or not, you still have a valuable point of view, you still can walk into an office and share your experience having your condition, having your disease. I personally thankfully have never experienced a copay accumulator adjuster, but I can still talk about the burden of disease as a type one diabetes patient, I can still let legislators know if I did go through a copay accumulator adjuster, this is how it would affect me. And this is how it would affect my entire life. And that point of view is very valuable. So while you’re listening to this episode, if you’re thinking to yourself, oh, that issue hasn’t affected me it hasn’t affected a loved one, maybe sometime in the future. I want you to just keep in mind doesn’t need to your voice is still important. Your voice still matters. So if you want to get involved in these states for these issues, do. Please do and we can help you connect you to the right people. So please reach out to that [email protected] email and And we will make sure that we put you in touch with the right people. So from the standpoint of advocacy days, there’s a couple in February and March and one in April, specifically related to copay accumulator adjustors. So if you want to join any of these, just let us know. And we’ll help put you in front of the right people. So those advocacy days just so we can kind of list them and I’ll stop talking afterwards and let Zoe ask your question, because I realized I’ve been going on a bit of a rant but on February 6, Missouri in the state capitol is holding an advocacy day. February 8, the National Multiple Sclerosis Society is holding an advocacy day in Florida. On February 12th, the bleeding disorders organization is holding a capitol day in Oregon in Salem. On February 29 and on March 18, there are a couple of different organizations holding advocacy days in Sacramento, California. So if you are able to make one of those two, please let us know we will put you in touch with the right people. And finally, on April 9, Columbus, Ohio, they’re having an advocacy day all of these are related to copay accumulator adjusters, so they want to get as many patients there as possible. Again, you don’t need to have gone through an accumulator adjuster, you don’t need to have had any issue accessing or affording your medication. You don’t even really need to have a condition or disease, you can just show up, you’re a constituent, your voice matters. If this is something that matters to you, or the people you love. And you’re able to do it. Please do.

Zoe Rothblatt  13:28

Woo!

Zoe Rothblatt  13:34

Awesome.

Corey Greenblatt  13:44

So I’ll take a break from there.

Corey Greenblatt  15:55

By the way, never apologize for going on and on. That’s what earned you spot is unofficial official co-host.

Corey Greenblatt  16:29

Well, I’m glad to hear that I’m always happy to come by and get a little ranting in.

Zoe Rothblatt  16:33

So, we talked a lot about the states, should we move to some federal advocacy?

Corey Greenblatt  16:38

Yeah, I’m happy to do that. So the federal advocacy isn’t as exciting from the state side in a lot of ways, because federal advocacy admittedly takes quite a bit longer. Things move a lot slower federally, because things are a lot larger. The size of the federal government versus the size of state governments mean that things take a lot longer, you need a lot more people to agree on things. And so things we’ve been talking about for years are still major issues. So, The Safe Step Act is the federal version of the step therapy law. Now, what’s exciting is that this year, we really do seem like there is momentum to get this bill passed into law, pharmacy benefit managers are a major point of emphasis in the current setup of Congress. So there’s a big effort to get a reform package passed for PBMs at the federal level. There is real momentum to include The Safe Step Act in this final language for the PBM reform law. So groups like GHLF, and many other patient groups around the country have been working very hard in the beginning of this year to ensure that it remains in the final language for the bill. There is a lot that can happen between now and the bills final passage, we at first thought we were gonna have to do it this month. But there’s some budget things that happens and now we haven’t a little bit extra time to pass this. So we have basically until March 1 and March 8 to keep pushing support for this law and ensure that as the final PBM reform bill language is completed and finalized, The Safe Step Act is not cut from that language as a result of making it a smaller, more easily passable bill. This is something that has bipartisan support in both chambers and shouldn’t be difficult and shouldn’t be one of the things that’s cut just to make the bill smaller. So that’s what’s on us to really work and make sure that that happens. We are going to be participating in a federal hill day on March 5 with the Digestive Disease National Coalition where we will be supporting this as well as the HELP Copays Act, which is the federal version of the copay accumulator adjuster law. And we will also be participating in another one in April with the Alliance for Transparent and Affordable Prescriptions. So if you want to get active on federal legislation as well, specifically, by the way, if you have a digestive disease, there is an opportunity for you to participate in the DDNC’s federal advocacy spring policy forum as well. So if you are interested in doing some advocacy work in DC in March and would like to get involved that way, again, please reach out to our advocacy email, we will connect you to the right people, we will make sure that you are able to share your voice at the federal level as well as the state level. And finally, the last kind of federal update is with regards to the HELP Copays act. So again, something we’ve talked about a couple of times federal version of a copay accumulator adjuster law, something that isn’t as far along as The Safe Step Act, in part because it was introduced a few years later. So it’s just a little bit behind. But we are hopeful about this as well continuing to garner support and get a little bit closer to a potential passage. And that’s really it at the federal side. There are opportunities from a non legislation standpoint to share your experience with CMS during their drug price negotiation hearings. They’re continuing to try and solicit information from patients similar to the way that the PDABs are doing at the state level. If you are interested in sharing your experience with the federal government, again, just keep an eye out for our emails, we will make sure that we will send out information about surveys about opportunities for advocacy about listening sessions, the best way you can get all of this information is to sign up for the 50-State Network and let us know what things you are interested in, so we can then make sure you are aware of them. And I think that’s everything from the advocacy update. Unless you have any questions or want to dive into anything specifically.

Zoe Rothblatt  20:28

No, that’s a lot. And it’s really exciting that so much is coming up in 2024. I would just say, you know, if you’re listening to this, and you feel like any sense of overwhelm by how much there is, know that there’s many different ways to get involved. You can, like Corey mentioned, go talk to your legislators, we can also share your story on social media or in the 50-State Network newsletter. Advocacy is really what you make of it and what you want it to be. And I always say like there’s no act of advocacy that’s too small, you talks about the momentum around The Safe Step Act and I think that we’ve gotten there, because every year there’s a little bit more people sharing their stories and putting more pressure. So whatever way you want to get involved in share your story, we’re here to help.

Corey Greenblatt  21:09

Couldn’t agree more. Everyone has a valuable experience to share everyone’s individual disease journey is important. Whether you’ve gone through these policy or these issues in the past or not. The average person in America doesn’t know what it’s like to live with your condition. So if you can simply just share with legislators what it’s like to live every day with a chronic disease that has value.

Zoe Rothblatt  21:33

Awesome. Well, thank you so much, Corey, I learned a ton from you today on where we’re getting active and how we can get involved. So thanks so much for co-hosting with me, and we’ll have to have you back on to give updates as the year goes on.

Corey Greenblatt  21:46

Yeah, I can’t wait. I’m always happy to join you, Zoe, and always happy to step in for Steven when it’s necessary. And yeah, if anyone is interested in learning more about any of these advocacy opportunities or ways to get involved, I’m always available. I know our advocacy team is always available, and we’re excited to see what 2024 has in store for us.

Zoe Rothblatt  22:06

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 on Apple podcasts and hit that subscribe button. Wherever you listen, we’ll have more people like you find us. I’m Zoe Rothblatt.

Corey Greenblatt  22:23

And I’m Corey Greenblatt. We’ll see you next time.

Narrator  22:29

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

Today we’ll talk about the recent measles outbreaks in the news and kind of get into where’s the public in public health so let’s dive in.

Steven Newmark  00:36

So measles, I thought that was eradicated. I got my vaccines many many, many years ago, I believe, as everyone in my family. So what’s going on?

Zoe Rothblatt  00:44

Yeah, what is going on? Same same, I got my vaccines when I was an itty baby, but it seems like it’s popping up in the news. So a few states, first, we saw the Virginia Department of Health put out a news release over this past weekend saying that they’re aware of a person with a confirmed case of measles who recently traveled to northern Virginia after being overseas.

Steven Newmark  01:06

Yeah.

Zoe Rothblatt  01:06

So, this exposure was linked to international arrivals at Dulles Airport, and then also at Ronald Reagan Washington International Airport. And these were both on January three and four.

Steven Newmark  01:18

And then there were cases in New Jersey, in Camden County, and in Philadelphia a measles outbreak that has so far infected eight people. And at the end of the last year in Delaware, around 20-30 people. So that’s a dangerous quarter there from New Jersey down to Virginia, I suppose. So let’s talk about who is at risk with measles.

Zoe Rothblatt  01:35

Yeah. So, you know, if you’re exposed, you’re at risk of developing symptoms. And health officials say that if you do develop symptoms, you should isolate immediately. And what are those symptoms? They usually appear within one to two weeks and they include, you know, your typical things like fever, cough, runny nose, also a rash, red watery eyes or pink eye. But really, who’s at risk? It’s anyone who’s not gotten the vaccine or not already got it measles.

Steven Newmark  02:02

So we’re good, right?

Zoe Rothblatt  02:04

Yeah, you shouldn’t worry. Actually, according to the CDC, one dose of the measles vaccine is 93 percent effective at preventing it.

Steven Newmark  02:12

Excellent. I’ve had two doses. So what’s that?

Zoe Rothblatt  02:14

97 percent.

Steven Newmark  02:16

Excellent.

Zoe Rothblatt  02:17

Looks like we’re hopefully in the clear.

Steven Newmark  02:18

Yeah, still, it’s definitely like a head scratcher. There’s no need to worry it or anything by any means. But it’s just the idea that another disease that was essentially eradicated is making a comeback, if you will. And I think it’s important to note that children under the age of 12 months are at risk because they have not gotten one dose yet. And that is scary for two reasons. Number one, one of these exposures. I think it was the one in New Jersey, I may be wrong took place at a daycare center. And I think the one in Philadelphia took place at a children’s hospital where there are necessarily children to the age of 12.

Steven Newmark  02:50

A few years ago, there was an outbreak in New York. I remember when I was in college, there was a case in Boston and we got an email from our university saying that there was a confirmed case and I definitely felt so nervous being immunocompromised at all, but it never turned into anything big. And I guess we can attribute that to the successful vaccine campaign for the measles, but things are looking like a little different today when it comes to vaccinations.

Steven Newmark  03:15

Also, I think measles is one of the most highly contagious viruses in the world.

Zoe Rothblatt  03:21

It is, it’s spread through respiratory droplets. The thing that’s like so I guess intense about it is that it can be airborne for up to two hours after someone with measles has been in the area.

Steven Newmark  03:33

That’s a long time.

Zoe Rothblatt  03:34

Yeah. Which like explains why that case in the airport was so concerning, because think about how many people could be exposed.

Steven Newmark  03:41

Right.

Zoe Rothblatt  03:41

That’s living in the two airports for two hours afterwards.

Steven Newmark  03:45

Right.

Steven Newmark  03:46

So what’s the deal with measles? Let’s talk a little bit about the history of measles.

Zoe Rothblatt  03:50

Go for it.

Steven Newmark  03:51

I know that 1912 was the first year we began reporting on measles. It became a nationally notifiable disease in the United States requiring US healthcare providers and laboratories to report all diagnosed cases. And in the first decade of reporting, according to the CDC, an average of 6,000 measles related deaths were reported each year. I think there tends to be this idea that the measles is like, oh, it’s just a rash or some spots on your skin. But no, and when you contract it, it’s pretty bad. It causes death.

Zoe Rothblatt  04:17

Yeah and in the decade before the vaccine, it’s estimated that three to four million people each year in the United States were infected. And just a little deeper into those numbers among reported cases in each year, an estimated 400 to 500 people died, 48,000 were hospitalized, and 1,000 suffered encephalitis, which is swelling of the brain, all from measles. So you know, that’s like a pretty big impact on society when you think about it.

Steven Newmark  04:44

Yeah, absolutely. We got the vaccine in 1963. Then an improved vaccine actually came out in 1968, which set us on a new goal, which was to eradicate measles.

Zoe Rothblatt  04:55

Yeah, so in 1978, I guess 10 years after that improved vaccine those see You see saw how successful it was and they set a goal to eliminate measles from the United States by 1982. Obviously, this goal was not met, but widespread use of the vaccine significantly reduced the disease rates.

Zoe Rothblatt  05:13

Right, so sort of cutting to the chase in 1989, there was a little bit of a measles outbreak amongst vaccine aged schoolchildren, which prompted the Advisory Committee on Immunization Practices and the American Academy of Pediatrics to recommend a second dose of the vaccine for all children. Cases then continued to decline further, and drumroll. There you go. Measles was declared eliminated from the United States in the year 2000. And it was all thanks to an effective vaccine program. There you go.

Zoe Rothblatt  05:43

I will say our listeners can’t see but Mac was wagging his tail when we did the drum roll, he wanted to add in.

Steven Newmark  05:49

There you go. Boom. So measles was declared eliminated 24 years ago, and yet here it is.

Zoe Rothblatt  05:56

And yet here it is. Yeah. Why are we talking about it today? If it was eliminated…

Steven Newmark  06:00

From the United States.

Zoe Rothblatt  06:00

From the United States. Well, yeah, that kind of leads us into how we’re talking about it. So despite the successful campaign in the US, measles is still prevalent in other parts of the world. So if you’re not vaccinated, and you travel, you can get it and bring it here.

Steven Newmark  06:16

Yeah, so a few things. Number one, like you said, people can travel and bring it here. Of course, generally speaking, the overwhelming majority of Americans are vaccinated against it, and it’s an effective vaccine so it’s going to be hard to spread it that way. But one thing that has dropped recently are vaccine rates of schoolchildren. So for 10 years, the share of kindergarteners who had received two doses of the MMR vaccine was 95 percent, but that rates started to fall and has been continuing to fall. While the people claiming vaccine exemptions for their children has risen as well over the past few years.

Zoe Rothblatt  06:58

Well, before we get to the third point here, just thinking about why are people not vaccinated. Number one, just kind of simple, like families got off schedule with childhood vaccination in COVID.

Steven Newmark  07:11

Very fair.

Zoe Rothblatt  07:11

You know, we’re in lockdown, you weren’t going to the doctor and then…

Steven Newmark  07:14

Totally.

Zoe Rothblatt  07:14

Life gets busy and you forget about it. Of course, health should not be something you forget, it should be a priority. But it happens when that contributes.

Steven Newmark  07:22

Yes, but…

Zoe Rothblatt  07:23

Go with the but.

Steven Newmark  07:24

You’re still required to get your MMR vaccine, if you want to attend public schools in the United States.

Zoe Rothblatt  07:29

That was a good but. And then vaccine hesitancy is increasing, and parents are opting their children out of getting vaccines at a high rate.

Steven Newmark  07:37

Right, it’s almost it’s been given more permission to put it simply to get an exemption to vaccines. And there’s certainly more folks looking for exemptions to vaccines. Ironic considering that it was a vaccine that helped get us out of a major pandemic and reduce a global health crisis into merely a global health pain in the ass or whatever, whatever stage we’re in. But even with that great success of the COVID vaccine, the irony is that the uptake in folks being vaccine hesitant, has risen.

Zoe Rothblatt  08:09

Yeah, and it feels like a lot of that is connected to, we talked about this, I don’t know maybe a year ago or more just like how the trust in public health is broken.

Steven Newmark  08:17

Yeah.

Zoe Rothblatt  08:18

And especially since COVID, I would say from my perspective, a lot of that has to do with the messages and COVID weren’t perfect and was changing, experts were learning at the same time as we were.

Steven Newmark  08:28

Right.

Zoe Rothblatt  08:28

And that contributed to people losing trust in public health authority.

Steven Newmark  08:33

Right. It’s like people were unhappy that like when the house was on fire, the instructions were not like to the letter perfect every single time. And by the way, it was like a fire that no one had ever seen before, that no one had ever understood and people were learning on the fly how to deal with it.

Zoe Rothblatt  08:47

And the fires like changing, you know, like the mutations, the variants.

Steven Newmark  08:53

Right, our metaphor is somewaht butchered, but the point remains. Look, let’s face facts living in the post emergency era of COVID people have come out and are clearly it was a tough, tough few years. 2020 was just, it was horrible. It was an awful awful year. 2021 wasn’t much better, and so on and so forth. And there’s definitely a level of anger and resentment. I think it’s a natural impulse to try and blame someone for that anger. And oftentimes, when you’re angry, you look to someone to blame. And there’s not always somebody that’s at fault, per se. So, the folks that seem to be taking some in certain quarters, some of the incoming for this, are public health officials who may have gotten some of the messaging wrong or didn’t adequately predict something that was essentially unpredictable or to the public face, if you will like someone like Dr. Fauci who was a public face of protecting the public at large and it makes it difficult to convince others of public health concepts generally.

Zoe Rothblatt  09:49

Yeah, I want to go to that point of like, it makes it hard to talk about public health, like a lot of public health successes are sort of invisible, like when you think about…

Steven Newmark  09:59

Right.

Zoe Rothblatt  10:00

Like measles before this, like you’re not seeing it spread around. So you’re not thinking of it as a big threat. Even thinking about like clean water and garbage in the streets, public health was instrumental in cleaning up our cities, and you don’t see people smoking indoors, like great public health successes, you just don’t see. So, it’s hard to grasp how important and like the change that they’ve made.

Steven Newmark  10:22

If you come from if you’re a generation or two generations or three generations removed from a certain illness, and you don’t see the impact, I guess, also, that’s a natural thing not to understand how bad that particular virus was, or illness was. I’ve seen people on YouTube rant about polio, the polio vaccine, and they’re saying how it’s not so great. And look, that’s before my time, but I’ve read my books, and I understand what it was like. And I’ve spoken to my dad who got his first polio vaccine, oh, I think roughly at the age of 10. And he would talk about how there will be outbreaks at the local public pool.

Zoe Rothblatt  10:55

Yeah.

Steven Newmark  10:56

Friends of his contracted polio when they were seven, eight years old. And to this day, they’re still paralyzed from the waist down, et cetera. I mean, it was a really debilitating illness, something that every community saw. And when the vaccine came out, that generation certainly understood what it was, and probably the generation after that, as well. But if you’re so far removed from it, that concept is so far away for you. It’s probably similar to measles with certain individuals or whatnot.

Zoe Rothblatt  11:19

For sure. And I have the same thing with my mom, she always talked about the girl in my classs that had polio. And I’m just thinking we’re even one removed from it and we kind of get it a little bit, but we never really saw it as a threat. And…

Steven Newmark  11:31

Right.

Zoe Rothblatt  11:31

Do you talk about that with your kids? Like, do you think your kids know about polio?

Steven Newmark  11:35

Well, yeah, because of who I am. I had like the little board books of Dr. Jonas Salk, you know what I mean?

Zoe Rothblatt  11:42

There’s bias there.

Steven Newmark  11:43

So, let’s be fair, actually, fun fact, I bragging that I live down the block from where Jonas Salk grew up, and I make sure my kids know that. The other thing too, is the idea of individualism versus public health. And the idea of public health being something we’re trying to do this to protect the public health, because on an individual level, if you or I don’t get the polio vaccine, the odds of us contracting polio are like nil, the odds of us contracting polio and then spreading it or like, nil, right? So it begs the question, well, what if there’s some side effect, it’s not known? Bad example, because there is no side effect. The polio vaccine has been around for decades, et cetera, et cetera. And we’re using the Sabin vaccine now, which I don’t want to get into the difference being that Sabin and Salk vaccine,  but whatever. But why do it? Because as seen with the measles example, if we don’t all continue to get vaccinated, it can come back and we don’t want it to ever come back.

Zoe Rothblatt  11:44

Exactly. Public health is the idea of setting up our society for the common good. Like we have a responsibility towards each other to build a society that has conditions that allows for people to be healthy. And of course, there’s individual health choices and decisions within that. But the way that public health works enables you to make those decisions like even think about when I talk to my doctor about eating healthy foods, I’m only able to do that because there’s public health people that said people need access to fresh groceries and you need to have that in the area.

Steven Newmark  13:03

I guess everyone has individual rights to do what you want live your life to the way you want. But you don’t have a right to live their life the way you want when it is impeding someone else’s rights. You know, an easy example in the public health realm is, well first and foremost, there are rules that we implore upon all of society because we have decided as society that your individual rights are trumped by the rights of society, for example, you have to wear a seatbelt I believe in all 50 states and your individual right now to do that has been taken away. I believe all 50 States if not, the majority require you to wear a helmet when riding motorcycle because your individual right to do as you please and potentially put your life at risk is outweighed by the harm to society of you having an accident and having to deal, with society having to deal with the fallout from something of that nature. In a very simple public health example, I think about the workplace. I know of people in workplace settings that go to work, even when they know they are knowingly ill. In fact, years ago, not that long ago, it was considered a badge of honor almost to go to work when you still had a cold, if not worse, like yeah, I’m sick, but whatever, I’m tough, I’m going to tough it out. But even in a post COVID world, people are still doing that where the idea should be no, if you don’t have to be a work if you’re not being paid by the hour, and you can be in a setting where you can stay at home and call in for a sick day. That’s important to your co-workers and the people around you as well.

Zoe Rothblatt  14:26

Absolutely. And I fee like I say this all the time, but when you’re immunocompromised like a cold just isn’t a cold it’s like it gets so much more intense. If I’m around someone that has a cold, I have Crohn’s and arthritis and like it goes straight to my gut and joints, everything flares up, it’s terrible and it makes a minor cold so scary because your body is falling apart before your eyes and yeah, like just taking the extra step of people to be careful and stay home and you know, just not put everyone at risk is like it’s huge. I don’t think people understand, first of all, like looking at me you don’t know that I’m immunocompromised and people just also don’t understand, like how much your sniffily nose can get me sick.

Steven Newmark  15:06

Or you could live with somebody that’s immunocompromised.

Zoe Rothblatt  15:09

Yeah.

Steven Newmark  15:09

You know, anyway,

Steven Newmark  15:10

Anyways, where do we go from here?

Steven Newmark  15:10

Yes, where do we go from here? You know, I think it’s incumbent upon all of us to better educate folks on public health and the seriousness of public health threats.

Zoe Rothblatt  15:20

Yeah, even just like today’s example, with the measles, like it was eliminated because of such a successful vaccine campaign like first they eliminated cases by 80 percent. and then even more, we know, education and campaigns like that work.

Steven Newmark  15:34

Absolutely and I think on the individual level, I’m not very good at PR, so I don’t know how to do it in mass, but certainly on the individual level, talking to folks about vaccine safety, misinformation, combating it on a one on one basis and supporting legislation that requires vaccines and minimizes the opportunity for opt outs, for example, to keep the entire public health wealth.

Zoe Rothblatt  15:57

Yeah, we do a lot of work with our 50-State Network on supporting vaccine legislation. And sometimes it could feel like there’s a really loud minority there of people who are shouting that vaccines are bad, but there’s a lot of good work being done at the state level that you can support.

Steven Newmark  16:13

Absolutely. Well, this was a good discussion.

Zoe Rothblatt  16:16

Yeah.

Steven Newmark  16:17

I feel better than I did when I started.

Zoe Rothblatt  16:18

Well, talking about feeling better, like what’s one thing you learned today, or in preparation for today, that’s helping you feel better?

Steven Newmark  16:25

I learned that measles is not dead, but I’m still not worried about it, at least on an individual level, if you will, to go back to that word.

Zoe Rothblatt  16:31

Yeah and for me, it was just like a really good conversation on the importance of public health and going through the history of things just even you know, breaking down with you the history of measles and how we got to where we are today just helps me realize that we have the tools to combat it.

Steven Newmark  16:45

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  16:53

And if you have any questions, comments, episode topics, 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 right have you on Apple podcast, tell us how great we are and hit that subscribe button. I’m Zoe Rothblatt.

Steven Newmark  17:16

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

Narrator  17:22

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

Well, Happy New Year, Steven.

Steven Newmark  00:29

Happy New Year.

Zoe Rothblatt  00:30

Welcome to the new season of The Health Advocates.

Steven Newmark  00:30

Yeah, so how are you feeling? 2024. Did you take a little break? I hope and recharge the batteries as they say?

Zoe Rothblatt  00:39

I took a break. I like filled up my content plate. I watched a lot of TV, read some books. It was good.

Steven Newmark  00:46

Anything we’re sharing?

Zoe Rothblatt  00:47

Yeah, I really liked that new mini series Lessons in Chemistry. It was a book that was turned into a series I thought it was great.

Steven Newmark  00:54

Oh my god, the world is so stratified. I don’t even know what the heck you’re talking about.

Zoe Rothblatt  00:59

That one’s probably for the girls. But…

Steven Newmark  01:01

Fair enough. Fair enough. I binge watched the crown. I finished it. And my wife left me on the last season. She said I’m not in but I went all the way and I liked it and I had fun.

Zoe Rothblatt  01:10

That’s good. It’s always good to like melt your brain a little bit reset. Now we’re ready to dive into 2024 advocacy.

Zoe Rothblatt  01:17

It looks like we’ll be active around the states for copay accumulators, drug pricing review boards. We have a lot of good stuff coming up this year to help protect patients.

Steven Newmark  01:17

Yeah.

Steven Newmark  01:28

And we should start off by saying it’s 2024. And that is a big election year. And while there are technically primaries in the Democratic and Republican parties, I’d say you won’t lose any money in Las Vegas betting on a rematch from 2020. And polls show the one thing that does unite Democrats and Republicans is that they do not want that rematch. But, so here, we are hurtling towards an election that the majority of the country doesn’t seem to want. But to paraphrase someone, you go to the election booth with the candidate you have, not the candidates you want. Barring something unforeseen in November, it’s going to be Trump versus Biden. But we’ll talk more about that throughout the year. But we should mention that Iowa is hosting the Republican caucus next week. So anything can still happen, though Donald Trump is the heavy favorite. Nikki Haley, the former governor of South Carolina and former ambassador to UN is within striking distance sort of in New Hampshire, which hosts the first primary in the country. But behind New Hampshire, it’s hard to see where Nikki Haley or really any other Republican can gain ground on Trump. So far, the Republicans are basically acting like well, maybe he’ll go to jail before the primary but that hasn’t worked out too well for them and likely won’t. So the primary probably will be packed up pretty shortly on the Republican side. And Joe Biden is also technically in a primary, though betting on one of his opponents would be like betting on my son’s flag football to you to be the University of Michigan football. You like that? I got in a shot about the national champions. All right, I’m done. Let’s get into what else is happening out there and 2024 or at least January 2024.

Zoe Rothblatt  02:49

Yeah, we have some few news items to start off the year. We’re going to talk about the importing of drugs, biosimilars, and this boost in respiratory, COVID cases. So let’s jump into our first bit of news that Florida can now import a limited set of drugs from Canada.

Steven Newmark  03:05

Yeah. So the FDA has approved Florida Governor Ron DeSantis, by the way, also a candidate in the Republican primary for the President, his plan to import a limited set of brand drugs from Canada.

Zoe Rothblatt  03:15

So when you think about has this happened before? The answer is no, this approval is a really big deal from the FDA. It’s like a longtime debate in public health, whether to import drugs from other countries. And just to dive into the history a little bit in 2003, Congress passed a law to let wholesalers and pharmacists import Canadian drugs but only if the FDA approved it as safe. So that’s where this comes from. And then in November 2020, the Trump administration published a regulation that allows states to propose plans to import the drugs and Florida was the first to do so.

Steven Newmark  03:51

So if the state imports these drugs, who’s going to be eligible to receive these drugs in Florida?

Zoe Rothblatt  03:56

Yeah, so in Florida, it would be made available to patients at county health departments managed by the State Department of Health inmates at state correctional facilities and certain others served by state agencies, and the program would then expand to Medicaid enrollees.

Steven Newmark  04:12

So at least at the outset, the average Florida citizen is not going to be shall I say, directly affected by this, will not be able to obtain one of these important drugs.

Zoe Rothblatt  04:21

Yeah, that’s right.

Steven Newmark  04:21

And what drugs are we talking about? For how long?

Zoe Rothblatt  04:24

Yeah, there’s a list of drugs that includes treatments for HIV, mental health, cancer, things like that. This approval allows Florida to import drugs for two years. So I assume you know, there’ll be looking at what impact it’s having and decide whether to continue to do so, stop the program, expand the program, etc.

Steven Newmark  04:43

So, what are the next steps what needs to happen for this program to get implemented?

Zoe Rothblatt  04:47

So yeah, like all things in public health, it doesn’t just happen immediately.

Steven Newmark  04:52

It’s not just the public health thing, by the way, is all bureaucracies.

Zoe Rothblatt  04:55

Yes.

Steven Newmark  04:56

All government all levels.

Zoe Rothblatt  04:58

That is very true. So Florida has to submit some drug specific information to the FDA. And this just ensures that the medications that are being imported have been tested and comply with FDA standards. So all good things there, just dotting our i’s and crossing our t’s, and then the FDA will re-label them consistent with the FDA rules and labeling here in the US.

Steven Newmark  05:21

And there have to be drugs available. Right? Yeah. I mean, Canada is not stockpiling drugs for American patients, I assume. So there have to be enough drugs available for importation.

Zoe Rothblatt  05:30

Yeah, I think Canada is facing some shortages of its own. So, it’ll be interesting to see how this plays out. Especially because some other states have also submitted plans or planning to submit plans to import drugs from Canada.

Steven Newmark  05:44

Well, very fascinating. So we’ll keep our eye on that and see what happens and see down the road, how it might affect prices to consumers. But for now, we’ll monitor.

Zoe Rothblatt  05:52

Yeah, and I guess just to wrap that up, we always want to see what the benefit is to the patient and how it’s saving the patient money. So, we’ll be looking closely, like we mentioned, it won’t be like a widespread thing that impacts most people in the state. But as we get the reports about how this is going, we’ll be seeing how the savings go to the patient or not.

Steven Newmark  06:13

Excellent. Excellent. Up next, I see in the news that CVS Caremark is going to be replacing Humira with biosimilar on their formulary benefit.

Zoe Rothblatt  06:22

So as we know, last year, a bunch of biosimilars came out for Humira. I think there’s about eight.

Zoe Rothblatt  06:29

And now CVS Caremark, which is one of the largest pharmacy benefit managers in the US, they announced that they’re gonna remove Humira from their major national commercial formularies, which would be effective on April one and instead offer biosimilars of Humira. So just to clarify there, it’s not all plans, there are certain plans that like select choice, I think they mentioned that you’ll still have an option. So it’s just good to double check what type of plan you have, maybe call your insurer call your doctor to see.

Steven Newmark  06:29

Mhm.

Steven Newmark  07:01

Yeah, it’s definitely something to I wouldn’t want to raise a five alarm fire, but certainly something to be concerned about. If you’re taking Humira and in good health as a result, you know, you never want to be non-medically switched if things are working well. So, it’s definitely something to be aware of.

Zoe Rothblatt  07:17

So I’m actually one of those people, plot twist here. You know, it’s funny because I’ve hosted the Breaking Down Biosimilars podcast and I’ve learned a lot about them in my time at GHLF. And I was thinking…

Steven Newmark  07:28

Yeah.

Zoe Rothblatt  07:28

Like, if I got this news a few years ago, it would have been like, what the hell’s a biosimilar?

Steven Newmark  07:32

Right right.

Zoe Rothblatt  07:33

What am I gonna do? I’ve been on Humira for a few years, this is so scary. But, when I saw the news, I just proactively emailed my doctor saying, if this happens, is that okay? And she said, yes, like double check your insurance plan, see if we could opt out, let’s look at the options available to us. But ultimately, it’s fine. And I think I feel good about it because, you know, I’ve learned so much about biosimilars. So my advice for patients that are in a similar scenario would be to learn now, they said it’s effective April 1, we’re recording on January 10, you have some time to learn more about biosimilars ask your doctor questions. So you can feel comfortable if you get switched. And then also just something to note, since the biosimilar is a different manufacturer, like the actual pen might just look different. So don’t be nervous that you got the wrong medication.

Steven Newmark  08:20

Yeah, well, it’s interesting. Essentially, what you’re saying it sounds like is that knowledge is power.

Zoe Rothblatt  08:25

Yes.

Steven Newmark  08:25

The more knowledgeable you are, the more power you have to make the proper decisions and hopefully the more comfortable you feel with whatever comes your way.

Zoe Rothblatt  08:33

Definitely, definitely, definitely. Especially when it comes to chronic health conditions and the weird terminology, there’s a bunch of terms with biosimilars, like interchangeable and stuff like that. And it can seem confusing on the surface, but it’s actually pretty simple once you start diving in and we have great resources to help you get there.

Steven Newmark  08:51

Excellent. All right, next big topic. It is winter, we are in the thick of winter and respiratory virus season is hitting pretty hard.

Zoe Rothblatt  08:59

Yeah, it’s 2024 we’re still talking about COVID sometimes it can feel so like fatigued and like we got COVID, flu, RSV it’s a lot.

Steven Newmark  09:09

It’s a lot. That’s why like I think it’s simpler to just say the respiratory virus.

Zoe Rothblatt  09:13

Yes.

Steven Newmark  09:14

Respiratory virus season.

Zoe Rothblatt  09:15

So let’s dive in. We’re seeing a lot of flu. The CDC data shows a rise in infection after the holidays. 38 states have high or very high levels for respiratory illnesses with fever cough other symptoms so that includes COVID and RSV and flu. CDC says flu has been increasing most dramatically. Flu typically peaks between December and February and the CDC Director Dr. Mandy Cohen expects it to peak by the end of this month.

Steven Newmark  09:43

The good news experts say that the flu shot this year is a good match for the strain that is spreading most in the community.

Zoe Rothblatt  09:49

Yeah, that’s always good to hear. We know that it’s a guess but it’s an educated guess because it’s done based on the southern hemisphere and predicting patterns, especially as we see a rising it’s good to know the vaccines doing its thing to prevent severe illness.

Steven Newmark  10:04

Right. All right, so COVID. Flu, COVID. COVID is putting more people in the hospital than the flu. According to CDC data, COVID-19 hospitalizations have increased for eight consecutive weeks rising 20% in the most recent week, but so far still remaining lower than this time last year.

Zoe Rothblatt  10:20

Yeah, that’s always good to hear. Obviously, it’s bad to hear there’s hospitalizations and a rise in consecutive weeks. But it’s good to see the data shows that not only is it lower than last year, but also the last three winters. So it seems like every year with COVID, it’s getting a little bit better.

Steven Newmark  10:37

Absolutely. That is good news.

Zoe Rothblatt  10:38

So, there is a new subvariant on the block.

Steven Newmark  10:41

Right, I was about to mention that. Yep. Yeah, JN1.

Zoe Rothblatt  10:43

I can’t even keep track of these anymore. If I’m gonna be honest.

Steven Newmark  10:47

Well, JN1 is officially a descendant of Omicron, which is what the vaccines were targeted for. And the data shows that the updates in the vaccines, do you have effective measures against this variant and the COVID rapid tests that hopefully have hoarded and medical treatments are still effective as well.

Zoe Rothblatt  11:02

Yeah, I was actually seeing some stuff this morning about maybe testing on day three of symptoms instead of day five about the test. So…

Steven Newmark  11:09

All right.

Zoe Rothblatt  11:10

It’s always changing your feelings that call your doctor do some Googling or just test, you know.

Steven Newmark  11:16

And I would just add cases are rising. The peak, we’re not the peak, it’s it’s difficult to predict peaks, but some models project the COVID-19 will peak sometime in mid to late January, closer to late January, like you said, but wastewater levels, which is an early indicator of community transmission seems to be very, very high for COVID.

Zoe Rothblatt  11:34

Yeah well, I got my flu shot and updated COVID vaccine earlier this fall, so I hope I am protected for this peak. I’ll probably be laying low a little bit. It’s kind of just like throughout the pandemic, throughout COVID, whatever you want to call it. It’s like, you know, bringing back some of the measures at times like avoiding subway at rush hour, bringing the mask back out, you know, maybe yeah, cooking dinner, instead of being at a restaurant, just small changes to reduce the chance of getting it.

Steven Newmark  12:05

Yeah, I’m back fully masked myself, even though I’m also fully vaccinated and feel pretty good. It’s interesting, I wear the mask indoors, I would say a lot not going to put a percentage on it most of the time, but it’s not 100%. And you know, somebody said, well, isn’t that a little hypocritical? I’m like, I don’t think hypocrisy is the right word for that. It’s like when I take taxis in New York City, I don’t put on a seatbelt because they often don’t have seatbelts in the backseat. But that doesn’t mean the next time I get into a car where I’m able to put on a seatbelt, I still put the seatbelt on if that makes sense. The seatbelt still provides protection. I feel like for the next few weeks winter, this is where approaching the peak, as you said, I’ve got the vaccines, I’ve got my own personal health that I try to keep in as strong position as possible. But then it’s the mask. It’s the N95, KN95 mask, that is the frontline protection, I think, so hopefully it helps.

Zoe Rothblatt  12:53

Yeah, hopefully, we know the tools and we’ll try our best to stay safe.

Steven Newmark  12:58

Right. Let’s talk about the final major respiratory illness this season, which is RSV.

Zoe Rothblatt  13:03

Yeah, RSV activity. Also no surprise that remains elevated in areas of the country, though there have been decreases in some areas recently. So I guess maybe that peak is kind of going down a bit.

Steven Newmark  13:16

Yes, that’s true, it seems to be slowing down, which is good. That being said, hospitalizations, cases, we’ll see where we are in probably a few weeks.

Zoe Rothblatt  13:24

And just to share some of our data, we often share our quick poll results on here, which are given to our Patient Support Program. So at the end of last year, we did a poll on the RSV vaccine, but just a reminder that this is only available to a select few groups. So it’s people older than 60, infants, and pregnant women. So they were screened out if they weren’t in that category. Infants weren’t taking this, so this is mostly data on people over 60.

Steven Newmark  13:51

Right, right.

Zoe Rothblatt  13:52

And they said 41% said that they received the RSV vaccine. So this was like early December. And then we were wondering for the 59% that hadn’t gotten the vaccine, why not? 30% said they plan to get it they hadn’t gotten around to it. 20% said they don’t want it and 18% said their doctor didn’t recommend it. Like they didn’t have a chance to talk to their doctor yet.

Steven Newmark  14:15

Wow. Interesting findings, to say the least.

Zoe Rothblatt  14:18

Another big concern that kind of sparked us wanting to do this poll was questions about side effects. We’ve had a lot of emails from the community asking what side effects people got from the vaccine. More than half who got the vaccine said they didn’t have any side effects. And for those who did get the RSV vaccine, the side effects were kind of the typical ones you expect like fatigue, muscle or joint pain, headache, only 6% had a fever. So really just like the expected things from mild side effects.

Steven Newmark  14:48

Yeah. Which are usually better than getting the actual virus itself, right.

Zoe Rothblatt  14:52

For sure. Yeah, I would take those side effects any day.

Zoe Rothblatt  14:56

I notice if I just hydrate a ton and actually eat a lot, and eat good food the day of vaccines, like the side effects are pretty minimal to me. I don’t have any science to back that up, but.

Steven Newmark  14:56

Yeah.

Steven Newmark  15:08

I’ll remember that I gotta say, I got the COVID shot. I felt like I got shot in the arm for like a day.

Zoe Rothblatt  15:13

I was swinging my arm around and it was not sore, like at all.

Steven Newmark  15:18

Really?

Zoe Rothblatt  15:19

Yeah, you got to keep it moving.

Steven Newmark  15:20

All right. Good to know. All right. Well, on that note, we will close by saying that vaccines are the best prediction. So if you haven’t been vaccinated with an updated COVID vaccine or gotten a flu shot, it’s not too late. There are also new vaccines and mono clonal antibodies to protect against RSV recommended for certain populations, which include older adults, pregnant people and young children.

Zoe Rothblatt  15:41

Yep, get your vaccine and talk to your doctor about the vaccine and staying safe and what’s best for you.

Steven Newmark  15:47

Excellent.

Zoe Rothblatt  15:49

That brings us to the cause of our show. Steven, what did you learn today?

Steven Newmark  15:52

Well, as always, I always find it fascinating to hear about our polls, and it was good to hear about the side effects. Number one, the amount of folks who experienced no side effects of the RSV vaccine and then number two that the side effects were as you put it, somewhat normal and certainly less debilitating than getting the actual virus itself.

Zoe Rothblatt  16:10

Yes, I’m for me just doing some research on the news to prepare for this episode, I learned more about the drug importation to Florida and kind of the history around there what we can expect.

Steven Newmark  16:20

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  16:29

And if you have any questions comments episode topics, definitely email us at [email protected] and thanks for listening to The Health Advocates, a podcast that breaks down major health news every week to help you make sense of it all. If you like this episode, please give us a rating, write a review on Apple podcasts, and definitely hit that subscribe button. Wherever you listen. It’ll help more people like you find out. I’m Zoe Rothblatt.

Steven Newmark  16:53

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

Narrator  16:58

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  00:28

And today’s episode is part three of a special three part series focused on polymyalgia rheumatica or PMR, for short. Over the course of these episodes, we learned about PMR from Dr. Grace Wright and patient advocate Linda Rinaldi. Now today, we’re joined by JP summers, Patient Advocate and Community Outreach Manager on our advocacy team with GHLF. And we’ll be talking with JP about advocating for yourself in everyday life, at the doctor, and with stakeholders when it comes to living with PMR.

Steven Newmark  00:58

But before we listened to your interview with JP, you should know that this is our last episode of the year.

Zoe Rothblatt  01:03

That’s true, that’s a wrap on 2023 season.

Steven Newmark  01:06

That is a wrap. Before we depart for the year, Zoe what are your highlights from the year?

Zoe Rothblatt  01:13

That’s a good question.

Steven Newmark  01:14

In podcasting world, I mean.

Zoe Rothblatt  01:16

In podcasting, well, I got to join Conner and Robert on Healthcare Matters, which is a really fun experience. But in terms of our podcast, the one interview that really stands out to me was the one that we did with Julie Baak.

Steven Newmark  01:30

Yeah.

Zoe Rothblatt  01:30

She talks about being an office manager and how she advocates one patient at a time, arm in arm, saying, you know, let’s do this together. And just the amount of people it takes to help patients get good care. Julie’s patients are so lucky to have her and it left me feeling like everyone needs a Julie.

Steven Newmark  01:47

Yeah, absolutely. That’s a good one.

Zoe Rothblatt  01:49

How about you? What are some highlights?

Steven Newmark  01:51

Well, my biggest highlight of the year in terms of advocacy was getting back to some of the states, I had the good fortune of being able to visit some state capitals with some of our fantastic patient advocates. And just to be out there, again, with our patients felt really good, and it had been too long, so that was good stuff.

Zoe Rothblatt  02:08

For sure. I remember after our team was on the West Coast, they had mentioned that it was the first time a legislator had heard directly from a patient about their story and the impact that made so that was definitely a highlight just hearing about that and thinking about how many others haven’t heard from patients and the work we could do in 2024 to make that happen.

Steven Newmark  02:28

Yeah, I just want to take a moment to express how grateful we are. And a big thank you to our 50-State Network advocates across the country. We are so humbled to do what we do and to work with such dedicated and hardworking patients such as yourselves, so thank you.

Zoe Rothblatt  02:42

Definitely, I second that. It’s exhausting living with a chronic illness and it can be exhausting what feels like fighting the same advocacy battle year after year. But each year, we see a little bit of incremental change around the states and more momentum federally. So, thank you to all of you who put yourselves out there with our network and share your story.

Steven Newmark  03:03

So, with that, let’s go to the interview with JP.

Zoe Rothblatt  03:05

JP, we’re so happy to have you here today. Welcome to The Health Advocates. How are you doing?

JP Summers  03:10

I’m doing really good, Zoe, thank you for having me on here.

Zoe Rothblatt  03:13

Of course. Thank you for joining, why don’t you start off by introducing yourself to our listeners.

JP Summers  03:18

My name is JP summers, I am a patient and a caregiver, and my role at GHLF is Patient Outreach Manager and I focus on patient advocacy.

Zoe Rothblatt  03:28

And part of that role you did a lot of outreach over the past couple of months with PMR patients. Can you talk to me about some of the main themes that came up and doing this outreach and chatting with patients?

JP Summers  03:39

Sure. So during these conversations, I found that pretty much everyone I spoke with took immediate action. That you don’t hear too often. The second they started to notice a change in their normal. When I say normal, like they were noticing symptoms, especially in their shoulders, they knew that they needed to do something about it. And so they took the initiative to check into what could be causing it. And that to me was such a great way to see how people really do pay attention to what’s going on with your bodies. And another thing was that once they received the diagnosis shortly after seeking help, they immediately sprung into action they did whatever was needed to be done. And as a patient, I just love how again, they were just so mindful of themselves and what wasn’t normal for them. And I just found these conversations to be very insightful. I learned a lot from them.

Zoe Rothblatt  04:37

That’s great to hear. When you say take action, you mean like go to the doctor’s office and say hey, something’s wrong. Is that what you’re talking about?

JP Summers  04:45

Yes, yes. So they would either call their primary care physician, there was a few that actually went into urgent care because again, all of a sudden they found theirself debilitated to the point where they’re like, okay, something isn’t right. Did I hurt myself? They took notice of those debilitating symptoms and so they sought out either a primary care physician and even from that point, they sought out a referral to see what’s going on with their bodies.

Zoe Rothblatt  05:11

And in learning about those stories, did you learn any like important questions or symptoms that patients brought up with their doctors about PMR?

JP Summers  05:20

Definitely, I did learn that for most of the people I spoke with, they were very active, whether they did exercising, or they had a full time job. And their concern was, I can’t do my normal daily activities. And for them to note those differences already, they had those questions already to ask whenever they were seeking, again, consultation. And again, that’s important to note these changes down and then ask them whenever you go to your appointment, because as someone who deals with symptoms almost on a daily basis, I know that when something isn’t right, you always make sure to bring that up during an appointment. Because again, the best way to get answers is to be very proactive, and seek out what could possibly be wrong with you. And so that was something that a lot of them actually said that they walked in to their appointments, or again, when they went to urgent care they listed everything that they could not do on a daily basis.

Zoe Rothblatt  06:21

And in thinking about those things of what you can’t do. And all of a sudden things that you’re used to doing, as I guess taken away from you because now from the pain and symptoms, you’re not capable of doing that, it can definitely cause I guess some like stigma with those around you and you’re not acting like you used to and people can think, why are you being lazy? JP, do you have advice on how to advocate for yourself amongst family and friends or explained to them, like how symptoms are impacting your daily life?

JP Summers  06:51

Yes. So when you are looking at a possible diagnosis, or if you are diagnosed with something, it’s so important to educate the ones around you, whether it’s coworkers, family, your friends, just speaking openly about what you’re going through can be very helpful not only to let them know what’s going on, but also mentally, it could be something that helps you to accept what’s happening in your life. And again, you need support. So by speaking openly with the people in your lives, that helps you to find that support, or who could possibly be there while you’re going to these appointments. Or you could just vent to when you’re frustrated with something, a treatment isn’t going right, or you’re just having a bad day. So definitely, you know, raising awareness is as important part of, I call it a part of your treatment, because you have the different things you do you know, you seek consultation from a medical provider, then you go onto your treatment, whatever that may be, but then another component is having that support of the ones around you.

Zoe Rothblatt  07:57

Yeah, I love that you call it part of your treatment. It’s so true. Like, there’s no shame in asking for help, especially if help is gonna get you to a place of feeling good. And if you need someone to lend you some spoons, because you’re out of them, that’s totally okay. Can you maybe share some advice on how you ask for help if people are feeling really stuck or embarrassed? I know PMR can often come on later in life and this may be a group of people that like haven’t asked for help before. So, what’s your advice for just even getting started with how to bring up that conversation?

JP Summers  08:30

So yes, the conversations can be very challenging to have mainly because you may feel that people are going to think that you’re either seeking out attention or that the situation that you’re currently in may not be as important because again, everyone sees themselves as, they don’t want to be a burden. So, the best way to lessen or ease your mind is to start a conversation. Just explain this is what’s been going on with me, you know, I have concerns, and I just wanted to share this with you. Because you’re an important person in my life, you play an important role. And I hope that you can be there, whether it be maybe helping get me to appointments or just being there to listen, but I really do need support right now. And this would be again, a way for them to open that conversation. Because you don’t know, you don’t know what’s going to happen and that’s the scary part. You have no idea what the next steps are going to be, especially if you’re newly diagnosed. So, just opening up your mind to having those conversations with people in your life can make the transition into this diagnosis so much easier. And again, I know a lot of people tend to not want to feel like a burden. But at the same time when you’re having those conversations, it does make it a little bit easier to deal with what you could be going through in the future. And I feel that the more conversations you have with the people in your lives, it can lead to even a better outcome because people don’t realize mental health is a form of self care. And if you’re having a bad day, if your symptoms are so debilitating, if PMR has you having these symptoms that keep you from again, doing the exercises, keep you from going to a family events, then these people are going to understand because you had that conversation with them, that you were comfortable enough that you expressed your concerns early on. So that again, if down the line, you need to seek out some kind of, you know, just having someone there can definitely help with the process of going through this diagnosis, this new life, because it is a new life that you’re leading. And it’s just how to navigate through that and these people again, around you play an important role, even though they may not realize it, let them know. And it’s hard to bring up conversation sometimes, but if you ease into it, I feel that more people will understand. And then you’re raising awareness, you’re getting them involved. Because I know personally, there’s so many people I talked to, you know, I learned from them. And again, being chronically ill, you go through different challenges. And I feel that a lot of people didn’t even know certain things could happen in your life. And once you have those conversations, once you open that door, it does make a huge difference on the relationship between you and them, it can actually strengthen it, a lot of people feel like I don’t want to bring it up. But at the same time, I’ve had my relationships strengthened because I stopped worrying about what people were gonna think. And I had those conversations, and it has been the best thing for me physically and mentally.

Zoe Rothblatt  11:36

I really relate to that piece you just said about you know, people may not even know. As you know, I live with chronic illness also, and in the beginning of my journey, I used to get really frustrated when people wouldn’t check in on me. And I slowly learned that I could just say, hey guys, I’m struggling today, or this is what’s going on. And they were then much more likely to ask questions or reach out and it made me realize it’s a two way street and people can’t read my mind and know what’s going on. And it’s really important to bring up my symptoms, what’s going on, because physically from the outside people may not know that I’m living with these conditions are having a hard day. So, while it takes a lot of courage to bring it up, it definitely like you’re saying is worth it in the end.

JP Summers  12:20

Yes, and I love that two way street because it truly is. People may not realize you’re struggling and they may not check on you as often as you think maybe they should. But at the same time, even you reaching out to them, telling them I’m having a difficult moment, I’m having a difficult day, that can truly again, strengthen that bond. And again, help them understand that you may be okay for a few days. But then there’s those tough days where you really need that support, and just even telling them through text or a call to say, you know, I just need to have someone there for me, that makes a huge difference. It really does. And it took me a long time to realize that, that sometimes I just need to say, hey, I just need to have someone listen to me. I had a really terrible doctor’s appointment, I got answers, but it wasn’t what I wanted. And I just need someone that’s there that could just listen to me. And I love that it is a two way street and sometimes you do have to be the one to make the initiative. But it does pay off when you do because I feel like that, again helps them understand your struggles, what it’s like to be a patient, what it’s like to have that diagnosis.

Zoe Rothblatt  13:27

Definitely. And actually what you just said about like, you know, you just want to vent about the doctor’s appointment that kind of made me think like sometimes it’s even helpful when you’re asking like friends, family, your provider, for help to say like right now I just want to vent so can you listen? Or like, I could really use like physical help, where you can go run an errand for me or saying like, I actually really need your advice on what I should ask my doctor or I need accommodations at work, like how did you go about doing that? And sometimes even just framing what kind of support and response you want from someone in that moment can be really helpful.

JP Summers  14:01

I agree with that because definitely, you know, having someone there to help you through this, like running errands so people don’t realize how hard it can be when you’re in a flare up. As you learn how to do your daily task when you’re in a flare up. It’s one of those things where if someone was to offer like just to go to the pharmacy for you or drop something off, it makes a huge difference. And it also helps you to feel a little bit better about what you’re struggling with. And I know how important it is to have that little bit of extra help. But when I say a little bit I mean something is small is huge for someone who is chronically ill, and someone with PMR when they have those debilitating flare ups, it can make a huge difference on how you can go about your day and again, just how to make it out of bed to just do the simple tasks like brushing your teeth, taking a shower just making a cup of coffee can be a challenge. I know like, I have friends that dropped coffee by for me, they’ll just say, hey, I know that you were having a bad morning because again, reaching out, I sent a text saying, Gof, I’m really I’m not feeling the greatest and then they’ll be like, do you need anything? And I was like, well, you know,

Zoe Rothblatt  15:14

Aw you have such sweet friends.

JP Summers  15:16

I could use you know something or hey, I could you maybe pick this up for me, I was gonna go out to the store. But again, saving spoons, saving my energy, because I know that I have a long day ahead of me, especially when you wake up in the morning, you’re like, okay, how am I going to make it through this day? So, yes, I agree with a lot of what you’re saying, I really do.

Zoe Rothblatt  15:34

So, switching gears a little bit, we talked a lot about advocating for yourself with like family, friends, and the doctor. But there’s also larger scale advocacy work that we do, that you do, about like engaging with legislators, stakeholders, policy. Can you tell us about how you work with our 50-State Network advocates, and you do a lot of the outreach calls and learn about their story and maybe it would just be helpful to learn from your perspective, like how you talk to patients about getting started on their advocacy journey?

JP Summers  16:03

Sure. So I would say the number one thing I do when I make these calls, is I listen, I listen to what they have to say, what did they go through? What are they going through, and from there, then I know what direction to go because a lot of times, some people are comfortable with being in front of a group of people, some people would rather do virtual advocacy, some people would love to write down their story, and which can be given as a written testimonial. But the main thing is everyone has a reason why they wanted to be a part of the 50-State Network. Fifty percent I would say is out of frustration. I know, that’s why I signed up originally, because you’re frustrated with the outcome, whether it be the insurance company, or that you’re getting nowhere with your treatments, or you keep having issues with your health. And when someone shares that information, again, that helps us to know how to guide them into which direction maybe they could help us with in the 50-State Network with advocacy. And I know doing in person advocacy, for me personally has been so life affirming, it has made a huge difference, because I can’t get back the time that I lost from the time as early diagnosed with my chronic conditions. But being able to talk about it with legislatures, being able to share what happened to me my experiences has made a huge impact on me on a mental level and emotionally, I feel like I’ve gotten a little pieces of my life back, that makes me feel good about the fact that I was able to make it this far in life, despite what my chronic condition has done to me as far as debilitating wise with the symptoms. But I know that when these people sign up for the 50-State Network, they have something to say, they want to share their experiences. And a lot of them mainly do it because they want to help make a difference. They want people to know what they’ve gone through. And that is so important because when you paint the story of just the simplest things that you try to do on a daily basis and if you need to get access to medication, and you’re having all these unnecessary obstacles, these people that want to take action are very passionate, and they want to raise awareness. And then again, that goes back to what we’re talking about when you’re speaking to family and friends, co workers, that’s a form of advocacy. And right there, that’s a way to raise awareness. And that actually is practice to doing in person advocacy, or again, virtual advocacy, because the more you talk about your condition, I feel like it’s healing. I know for me personally, it can be hard at times to discuss what’s happened in the past. But at the same time, I feel a little bit I like I’ve healed myself that it’s like, you know what, I found a way to get back the times that the moments that I lost with my kids, the events I couldn’t go to, the time where I lost access to my medication and advocacy has made me look at life in a positive way. And I say that because when someone goes through all these life changes, it can definitely make you think about how am I even going to make it day to day. And advocacy truly is something that I know can help others to continue to fight to continue to look at this new way of life. And for most people, if they’re able to share their story and raise awareness, that is something that they really want to do. And again speaking to your family and friends as a way to get started and then just all these things that come up that we can have these patient advocates get involved with, it’s a way for them to feel like they have some control. That’s one way that you can regain that control of your life.

Zoe Rothblatt  19:46

Yeah, that’s really beautiful JP, I love like you’re saying that you’re healing yourself while you’re sharing your story. And just to bring it back to PMR really quickly is that I noticed in a lot of my outreach with patients that when they were diagnosed with PMR, they had no idea what it was. And when they were Googling, there wasn’t a lot of information out there. And they said they like maybe had heard of one other person that had it. And I think what you’re saying resonates probably even deeper with the PMR community in the sense that it’s so important to share your story because despite PMR being a popular disease, and a common diagnosis, for some reason, there just like isn’t a really loud vocal community around it. And we’re here today to talk about it to try and change that. And I think it gets so important that even if one person feels less alone, this is what Linda said in the interview with her, like we’ve at least helped that one person. And it’s important to think about all these different conditions and how we can continue to raise voices.

JP Summers  20:44

Yes, and I completely agree with that. Because it can be a huge challenge to have the day to day when you’re chronically ill. But when speaking to the patients with PMR, even a few caregivers that I spoke with, there was another common thing I heard is that it was frustrating. It was frustrating, because again, all of a sudden, they couldn’t do something they were used to doing, and they wanted answers. And when they got those answers, a lot of them were very discouraged or upset, and they didn’t realize it, but they were starting their own advocacy by pushing for answers. And when I spoke with a lot of the people I said, you know, you definitely advocated for yourself when you walked into that doctor’s office, when you went into urgent care, when you got an answer that maybe wasn’t what you wanted to hear, you were already advocating. And I think a lot of them were just kind of shocked, because they didn’t realize that that was a form of advocacy. And to hear them even though they were going through that situation with the symptoms, talking about how their lives have already changed in the early stages, a lot of them were optimistic about you know, I’m going to start this new treatment, I hope I see good results. So, just hearing positivity already in their voices that made me happy because I love when another patient or caregiver I speak with has something positive to say about a situation they had no control over.

Zoe Rothblatt  22:08

I think that’s a beautiful note to end on. You know, there’s no act of advocacy too small, just by walking into a doctor’s office you’re advocating for yourself. Like JP mentioned, talking with your family and friends is advocating for yourself. Even just doing simple tasks for yourself is a form of advocacy. And if you aren’t, join our 50-State Network and get on a larger scale in front of legislators and stakeholders, we’re here to support you in that journey as well. But just the message that there’s a lot of ways to advocate and we’re here supporting you. Thanks so much, JP, for joining us today.

JP Summers  22:40

Yes, thank you for having me, Zoe.

Steven Newmark  22:44

Wow, that was a really great interview with JP. It was fascinating to hear her talk about her work in getting community support and leaning on friends. And I think that there’s some useful information there for our larger community.

Zoe Rothblatt  22:56

Yeah, definitely. I learned so much from JP about advocating for yourself, whether it’s living with PMR, or another chronic illness and just leaning on those around you.

Steven Newmark  23:05

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  23:14

And if you have any questions, comments, episode topics, 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, please give us a rating and write a review on Apple podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.

Steven Newmark  23:38

I’m Steven Newmark. We’ll see ya in 2024.

Zoe Rothblatt  23:40

Next year.

Narrator  23:45

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.

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. And 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 joined by Basmah Ali, who lives with inflammatory bowel disease. Basmah shares her story about getting diagnosed, what resources were available at the time and ultimately how lifestyle changes and community really helped support her in her health journey. So Basmah, welcome to The Health Advocates.

Basmah  00:44

Hi, I’m so happy to be here. Thank you for having me.

Zoe Rothblatt  00:47

Awesome. Why don’t you start off by introducing yourself to our listeners, a little bit about you,where you’re from, maybe how we got connected?

Basmah  00:54

My name is Basmah. I live in Minnesota and have Crohn’s disease. I’ve been living with it for about 20 years now and have been on social media since 2016, or 17. And we got connected through one of our mutual friends, Tina Aswani Omprakash. She’s a health advocate with Crohn’s disease as well. And she has been doing amazing work with IBD Desis and South Asian IBD Alliance, which I’m starting to do some collaboration with them right now but that’s how we connected.

Zoe Rothblatt  01:28

Awesome. Well, thank you so much for joining and I’m excited to get to know you and it’s so nice, like working with South Asian IBD Alliance and being connected more with the community there. So let’s dive into your story. Tell us a bit about what your diagnosis with Crohn’s was like and your experience learning about IBD? Did you know about it before? Was it a total surprise when you were diagnosed?

Basmah  01:50

No, so I was diagnosed about 20 years ago in 2003. And I just turned 16 at the time. About a month after my birthday, I started experiencing some symptoms mostly in relation to fatigue. I was just very, very tired all the time. I wanted to sleep most of the day. And I wasn’t a very active kid but this was unusual. And then I started experiencing bowel issues, mostly diarrhea, which I’ve kind of been a sickly kid growing up and the last few years were even more so before I was diagnosed. But this was just felt like it was all of a sudden and so my parents took me to the doctor. And my pediatrician was asking me about my eating habits, mostly not sure if she was thinking I had a disordered eating because I wasn’t eating much either. But my parents, my mom, especially it was like no, something’s going on, we need to check her out. So luckily, my pediatrician listened to that and sent me to a GI doctor after getting some tests done and I was diagnosed with Crohn’s disease within a few months. But at the time, there was absolutely no information about it. I think the only person in my family who knew about it was my mom, because she studied medical school in Egypt, that’s where my family’s from. But she only knew the basics at the time and I didn’t really think to look it up online. I was just like, okay, so I didn’t really even fully understand that this was something I would have to live with my whole life. It was just okay, how do we fix this? But then as I was taking medications, I spent the entire summer just laying in bed trying to get used to some of the medications that I had to take. Then I felt like maybe after a year or so I said, it kind of hit me that okay, I guess I have to figure this out, you know, but it wasn’t until even after college, I just felt like throughout my education and my first few years of working, I was just trying to kind of get by without actually learning about the disease. And it was really difficult because college itself was really difficult for me, I just kind of had to do part time because full time was too much. Actually it kind of put me in the hospital multiple times, I couldn’t focus on my studies and I was falling behind a lot to the point where I was put on academic probation when I was in sophomore year, I believe. And then work was difficult as well. And so I work in mental health and social services, I was even fired from a job when I was in low income housing and that’s when I started realizing, okay, what I’m doing right now is not helping, like I was taking medication, but I wasn’t really empowering myself with knowledge on how to take care of myself. And so that’s when I started getting into okay, well now we do have information, I do have high speed internet, I can look this up online, and so there wasn’t much at the time, but I still had enough to realize, okay, these are the things that I have control over my diet, my lifestyle, adhering to my medication more consistently, all sorts of stuff that I just didn’t really take seriously before. And thankfully, I’ve been in remission since 2019. So, knock on wood, thank God.

Zoe Rothblatt  05:20

Oh, good, yes, knock on wood for that, by the way, I also have Crohn’s disease and it’s interesting to hear you say that, like, after some time, there was a period where you realize like, oh, this is actually chronic, I had the same thing where I was like, just so excited to have an answer I didn’t think about the fact that this was something I would be dealing with for so long. And I want to hear more about that moment for you when you realize that it’s something you have to deal with for a long time. And then you said, or you went to go look at resources, like what did you find? And how is it different now with what resources are available, especially being connected to South Asian IBD Alliance and the great stuff that they put out? Do you feel like there’s more better resources now compared to when you were diagnosed? Or what’s still needed?

Basmah  06:03

Absolutely, absolutely. Like I said, there was pretty much nothing when I was first diagnosed. And so I just kind of had to take the word of my doctors, my doctors have been fantastic so far, I know not everybody has that kind of experience but I’ve always had pretty decent relationships with my doctors. But you know, you only meet them for, if you’re lucky half an hour.

Zoe Rothblatt  06:27

Right.

Basmah  06:28

And so there’s only so much that I could learn from them. But for years, I was just trying to say, okay, I’m just gonna do whatever it is they tell me to do. But also as a teenager, I was thinking this could go away if I just ignored it, which I’ll say Crohn’s caused some mental health, depression, anxiety in me that kind of thought, in my mind, if I avoid it, it doesn’t really exist, which, obviously, that doesn’t work that way.

Zoe Rothblatt  06:56

So what are some of the things that you did, like when you realized you shouldn’t avoid it anymore?

Basmah  07:01

I think it really just hit me when I was interning for a little bit in Seattle, Washington. I was interning at the Children’s Hospital, and I was getting sick there and then I said, okay, you know what, I have some time, I need to see what’s going on, or what are some things that I can do. And then they kind of hit me saying, oh, this has affected my digestive system, let’s see if there any diet changes. I didn’t learn anything about that. I just was told there are foods I should avoid. But I said okay, what is it can I eat? What should I be looking into more? And so I started with a gluten free diet, basically and I started seeing improvement within weeks, minimal improvement, but there was something that made me realize I could be on the right track here. And so I did more and then when I came back to Minnesota, because my internship was a temporary one, I started working for a few years, and then I was feeling relatively fine, but not fantastic. And so I started seeing an acupuncturist, who told me that I need to focus more on eating vegetables, which before it was like, okay, avoid fiber as much as possible. But eat your vegetables, very well cooked, focus on getting your protein through meat, seafood, all sorts of stuff and that just go back to the basics. And then over time, once you start feeling better, you can reintroduce more foods. But she also emphasized on exercise, and getting enough sleep, stress management, all of the stuff that we hear about now is like the four cores of your overall well being and so I really focused on that. And it was really helping me out, but there was a time when I had a lapse of insurance in between jobs. So, when I got my new job, I was a case manager for low income housing at the time, and I didn’t get my medications on time and so it caused me to get into a huge flare. So my point here is that medication alone didn’t work for me, and diet and a holistic lifestyle didn’t work for me either. So like I said, I was fired from that job within a few months and then I just said, okay, now I have to focus on figuring out ways to take care of myself. So that’s when I went on internet overdrive, and started really connecting with other people with IBD and other chronic illnesses. And it was also part of the reason I started my platform to begin with was I wanted to share my health journey to the public more specifically because I realized there wasn’t a lot of representation, a diverse representation, I should say, and I wanted to just share my story in hopes that it will connect with other people from my middle eastern North African background, and as well as other Muslims, because I realized there were some cultural barriers as well. Especially when I was fixating on my diet, you know, I had to bring my own food to other people’s places, and in our culture, we love to show our love through food.

Zoe Rothblatt  10:23

Yeah. How did you explain that, like what was going through your head at that time when you had to show up with other food, and then like, not only physically be different than everyone in the room, but then have to explain it too?

Basmah  10:35

Oh, so it was interesting at first. And so luckily, my community and my family understand it now. But at first, it was just so hard because all of my aunts and my friends and uncles were like, can’t you just eat a little bit of this, it won’t hurt you? When I know, it would kill me for a week or so.

Zoe Rothblatt  10:57

Right.

Basmah  10:57

And it was really hard because I felt like, well, number one, I didn’t want to hurt other people’s feelings. And two, I kind of felt left out because these were foods that I grew up with and so there was that grieving process of I can’t do everything that others can do, too. So it took some time and there came a point where I was avoiding events as well, which wasn’t helpful. But at the same time, it kind of eased some pressure off of me, but it got to be pretty lonely after a while. And so it was one of those things that I had to learn that people just do things because they genuinely care. But they also wanted me to feel better, too. So I think over time, it was understood. Now that I’ve been feeling so much better, it’s not so much of an issue anymore, because I mostly just stay away from bread and dairy when I go out, but had to take some time to understand that, okay, this is what’s making Basmah feel better. I had more energy, I was more outgoing, I wasn’t so bedridden all of the time. And so I think just helping the others see that really made a difference in the way that things were approached.

Zoe Rothblatt  12:18

Yeah, I think taking that time and like figuring out what works for you and going through different like phases of how you can engage with the world as your disease is so important. We often talk about like the trial and error when it comes to medications. But there’s also a lot of trial and error with lifestyle with this disease. And like you’re mentioning, you know, like going to social events, taking a step back and really figuring out what works for you is so important when managing a chronic condition. Because at the end of the day, like you’re saying you don’t want to hurt people’s feelings, but it’s also you and if eating, something’s gonna put you out for a week, you have to like go weigh the consequences there and think about, you know, how am I going to succeed in this situation and feel my best and be able to make memories with the people I love.

Basmah  13:04

Absolutely. And you made a really good point that not one thing works for everyone and I just want to give my advice out there. If one treatment or one lifestyle doesn’t work out for you, there are so many other options right now. And the important thing is that you do educate yourself, you have the opportunity and the resources to do so. And it’s so important to connect with other people who have similar experiences with you. Because as much as my family and the people that I grew up with, are really very caring and have been helping me out. It’s really different when you get the support and have the connection with other people who are living with IBD who get it or other chronic illnesses to like, they just understand what it’s like to navigate everything to accommodate your own needs.

Zoe Rothblatt  14:00

Yeah, I think that’s like an amazing note to end on with that advice to say, you know, keep trying to figure out what works for you. It may be exhausting, but there’s a lot of community support out there and options. So, thank you so much for joining us.

Basmah  14:14

Absolutely. And I just wanted to say the ultimate thing I have so much advice to give, but ultimately you just have a lot of compassion for yourself. You’re not gonna figure things out right away. And there’s a lot of trial and error. But just like I said, educate yourself, connect with other people and also find time to enjoy life do the things that you like, life is too short to wait around until you feel a lot better.

Zoe Rothblatt  14:39

Definitely, well thank you so much for sharing that and where can our listeners follow you on social media to learn more about your story?

Basmah  14:46

So, I have an Instagram account actually also Twitter and TikTok, I’m not very good on those platforms. So just follow me on Instagram – @thisimmunelife.

Zoe Rothblatt  14:59

Awesome, we’ll follow you there. Thank you so much.

Basmah  15:02

Thank you for having me.

Zoe Rothblatt  15:05

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, please give us a rating write a review on Apple podcasts and definitely hit that subscribe button. Wherever you listen. It’ll help more people like you find us on Zoe Rothblatt. We’ll see you next time.

Narrator  15:28

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. And 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 is episode two of a special three part series focused on polymyalgia rheumatica or PMR for short. Over the course of these episodes, we’ll speak with a physician and a patient who deals with PMR in their daily life so we can get a better understanding of what PMR is and the journey that patients go through to get diagnosed and treated. If you missed our first episode with Dr. Wright, please take a listen when you have time. In today’s episode, we’re joined by Linda Rinaldi, a PMR patient, and we’ll hear from her about when she recognized symptoms, what her diagnosis was like, her treatment, and how she’s feeling today. Welcome, Linda to The Health Advocates, we’re happy to have you here. Now why don’t you start off by introducing yourself.

Linda Rinaldi  01:07

My name is Linda Rinaldi. I am from South Jersey, and I am a criminal prosecutor, that’s what I was for 26 years but I’m now retired. And I live right outside of Philadelphia, I live in South Jersey, but I live in right outside of Philadelphia.

Zoe Rothblatt  01:21

Okay, well, I guess I’m on the other end of you. I’m from Northern jersey, but living in New York City. So not too far. We’ll have to hang out. But in the meantime, we get you virtually to learn more about your polymyalgia rheumatica diagnosis, can you tell us a little bit about what that journey was like with getting a diagnosis and some of your initial symptoms, how long it took to even get the diagnosis.

Linda Rinaldi  01:45

My initial symptoms were I felt like I had exercised too much. That’s how I felt and I stopped exercising. I, you know, I went to visit my granddaughter in London, and I knew I was gonna get sick because she was just two and I hadn’t been around two year olds in a long time. And I did get sick. But as I was getting sick, I started feeling the symptoms of PMR that I didn’t know that I had and it was like I exercise too much. That’s what it was like.

Zoe Rothblatt  02:12

And it was like all over your body or localized to an area?

Linda Rinaldi  02:16

Yes, no, all over my body from my neck down to my toes. My head was not involved, but I couldn’t move my head. It took about a day or a couple of days to get a diagnosis because I called my family physician and she told me to stop the Crestor  that I was taking because sometimes if you’re on it too long it causes muscle aches and can do something with your muscles. So, I stopped right away. That did not do a thing, did not do a thing. So I called her back and she was stumped. She’s like now what? Maybe you should see a rheumatologist. So I said well, okay, I’ve never been to a rheumatologist. So I will go to a rheumatologist. So I called, she gave me the names of couple people, and those couple people had appointments for like six weeks away. It’s like, I cannot live like this for six weeks. I just can’t because I couldn’t move. I couldn’t do anything, I couldn’t drive, I couldn’t wash, I couldn’t wash my hair, I couldn’t brush my teeth, I couldn’t take a shower, I mean, I couldn’t turn my neck, I couldn’t even roll over in bed. That’s how bad it was.

Zoe Rothblatt  03:18

And then yeah, obviously, like you’re saying you couldn’t do any of this. Like something was telling you that something was really wrong and that you couldn’t wait six to eight weeks for a rheumatologist. So what happened? Were you able to get an appointment sooner? Did you have to wait? What happened when you got to the rheumatologist?

Linda Rinaldi  03:34

Well, first of all, I said to the woman, I cannot wait that long. I have to see somebody today or tomorrow or the next day. I mean, I can’t move I have to see somebody. So she gave me this one doctor, and the doctor knew right away that it was PMR. But at the time, I had no idea what it was. I could just barely walk into the office there. I had to drive there but I had to keep my hands on the lower part of the steering wheel because I couldn’t raise my arms. I couldn’t turn my head. It was very, very scary driving because I couldn’t do anything that you would normally do when you’re driving.

Zoe Rothblatt  04:07

Yeah, it’s so scary to have like any symptoms appear but also such a sudden extreme onset is so scary.

Linda Rinaldi  04:14

Yes, that’s what it was. It was very sudden, very extreme, very scary.

Zoe Rothblatt  04:19

So what went through your head when you got the diagnosis? Was it like relief? Oh, there’s a name for this, confusion like you said, what even is this? What do I do now?

Linda Rinaldi  04:27

I guess it was all those things. What do I do now? Yes, there’s, I was glad that there was a name for it but I didn’t know what the name was. You know, I mean, the doctor told me that it was not fibromyalgia and she said that specifically. It’s not fibromyalgia we’re talking polymyalgia had no idea what she was talking about.

Zoe Rothblatt  04:45

And yeah, I think also like learning something has a name often means that there’s a treatment associated with it. You know if we can call it what it is, then we can treat it. So what happened there, like what was the treatment recommended to you or did you talk about options with the doctor?

Linda Rinaldi  05:00

No, I didn’t talk any options out, she just put me on a steroid, which I really did not want to go on because I’ve heard such bad things about steroids. But that was the only option that I was given is to go on the steroid and she started me out at 15 milligrams. And then each time that I saw her, which was every two weeks, she would taper down 14 milligrams, 13 milligrams, 11 milligrams till we got to where we are now, which is a year later. And it’s one milligram and I’m starting to have symptoms again. So she’s just this last time I saw her on November 21, she is kicking it back up to two to three milligrams. So one day, I’m taking three one day, I’m taking two, one day, I’m taking three one day, I’m taking two. So if it works, it’s fine.

Zoe Rothblatt  05:45

Yeah, I’m sorry to hear you’ve been having symptoms again. And I kind of relate to that, I hear a feeling and your voice where you’re like it kind of like it is what it is like you have this diagnosis. I have inflammatory arthritis and Crohn’s disease. So obviously different than what you have but I understand like the chronic nature of the ups and downs of it and trying to figure it out. But it’s really good to hear that you have a care team that you trust that’s figuring it out with you as new symptoms crop up.

Linda Rinaldi  06:14

Yes, it is really, really helpful to have that. And especially, she calls me, she does my bloodwork, like every other time that I’m there to see if I’m inflamed or if there’s any change in my bloodwork. And there hasn’t been for the past year, but I’ve been on the steroids.

Zoe Rothblatt  06:30

Can you tell me a little bit more about like how you describe your symptoms, I know polymyalgia rheumatica is really common, but it feels like a lot of patients don’t know about it. And I wonder if maybe you tell us like a little bit more about how you explain your pain, or experience your pain of that could have helped some of our listeners identify it themselves.

Linda Rinaldi  06:47

I guess I couldn’t get in bed, I couldn’t put the covers over me. I couldn’t roll over, I had to get my son to come down and roll me over in bed because I couldn’t roll over in bed. And I couldn’t drive, I couldn’t lift my arms, I couldn’t walk, I couldn’t brush my teeth, I couldn’t wash myself, I couldn’t take a shower, I couldn’t wash my hair. I just couldn’t do anything. It didn’t really hurt, it wasn’t pain, I just couldn’t move.

Zoe Rothblatt  07:14

Which is like almost scarier than pain, right? Because all of the sudden you can do all these basic things in your life that you go about doing without even thinking about, like rolling over in bed isn’t something you would have ever put thought to and now all of a sudden it’s taken away from you.

Linda Rinaldi  07:29

Those are things you don’t think about you just do them because you have to, you know, and all of a sudden I couldn’t do them.

Zoe Rothblatt  07:34

And then once you started on those steroids did those things begin to improve? Like how did you feel?

Linda Rinaldi  07:40

Yeah, the steroids helped within a couple of days, they started to lessen the symptoms a little bit. And then I would say within four days, it was better in terms of the movement.

Zoe Rothblatt  07:52

I think it’s like, yeah, it’s a lot to experience within the span of it sounds like almost within a week to two weeks. It was like you had this extreme pain.

Linda Rinaldi  08:02

Yes.

Zoe Rothblatt  08:02

Extreme inability to do things, not knowing what’s happening, getting answers and then getting relief pretty quickly.

Linda Rinaldi  08:08

Yes, within the four or five days, I got relief, thank God. And I was really very grateful that the rheumatologist knew what PMR was, because I had never heard of it. In fact, usually when you’re diagnosed with something you hear all kinds of people have they’ve had this they’ve had that, only one person 35 years ago had PMR. That’s it and nobody, everyone says really, you have what it is called again? I have to look it up, because no one has ever heard of it. So for you to say that it’s common, I’m thinking really, is it really that common?

Zoe Rothblatt  08:41

I know. I only learned about it recently, actually, I don’t think it’s like…

Linda Rinaldi  08:45

Okay.

Zoe Rothblatt  08:45

Common in knowledge. But I do think a lot of people are living with it either undiagnosed, or just getting diagnosed. We actually did some outreach, like over the summer and I spoke to so many patients who have PMR, you know, experienced PMR symptoms for some time. And they had the same exact thought of like, I didn’t know anyone else with this and I like scoured the internet to find people which is also part of the reason we’re interviewing you and trying to get information out there and let people know while it may be totally scary to experience these things, like it is normal, like it happens to people and here is Linda sharing her story. So yeah, what’s that like for you now to like, openly share your story and even I think a big part of what your story was that you advocated for yourself saying like, something’s really wrong, and I need to get to the doctor now. I guess I’m just like one saying it’s amazing that you self advocate it in that way because a lot of people it takes so many years to get diagnosed and for you, you were like, I know my body, this is wrong, I’m going to get there. And maybe like what’s your advice for other patients so that they can you know, feel confident to do the same?

Linda Rinaldi  09:53

My advice is, don’t stop. Tell the doctor, tell as many doctors as will listen to you what your symptoms are and advocate for yourself, you have to because if you don’t, nobody else will do it. And nobody knows your body, what you’re feeling and what you’re feeling going through better than you, you know, and you have to, you have to advocate for yourself, you just have to.

Zoe Rothblatt  10:15

It’s so true. I mean, we’re The Health Advocates, I totally agree. It’s like, you have to advocate for yourself first, and then others will join along in the fight. And you know, we’re here to support you. But it really has to start with you speaking up. And it can be really challenging, especially like the power dynamic with a doctor and patient and insurance company and all these players in the healthcare system can make it feel hard, but know that there’s a community out there that we’re here and willing to help you along.

Linda Rinaldi  10:43

Exactly.

Zoe Rothblatt  10:44

So you know, thinking about getting that diagnosis, and like you said, you didn’t know anyone with that you hadn’t heard of it? Where did you go to learn more about it?

Linda Rinaldi  10:52

I googled it. Like everybody, I Googled it, you know, and then I learned so much. I had every single symptom that, I guess it was a an educational piece that I googled and came across and I had every single symptom. You kind of forget how badly it is until you’re reminded that yeah, it was really, really, really bad. I mean, I could not do anything. I could not move. I could not do anything.

Zoe Rothblatt  11:19

Yeah, I really relate to that. It’s like you almost protect yourself and forget.

Linda Rinaldi  11:23

Yeah.

Zoe Rothblatt  11:24

What the worst of it was.

Linda Rinaldi  11:25

Yes.

Zoe Rothblatt  11:26

But it’s always a part of you.

Linda Rinaldi  11:28

Exactly. I think it has to be a part of you, because you just can’t forget those symptoms when you can’t move. But that’s why I’m hesitating with the exercising, because that’s what I feel again. And I asked the doctor specifically, is this going to come back? And she said to me, I don’t know. It depends on your body, it depends. We’ll see. You know, we’ll taper down. We’ll go through the whole procedure, and we’ll see where you are. And she was very disappointed when I had the symptoms again.

Zoe Rothblatt  11:55

Well, yeah, of course, it’s disappointing. At the same time, it’s also nice to know that like she’s feeling that disappointment with you.

Linda Rinaldi  12:03

Yes.

Zoe Rothblatt  12:03

And can sit in that with you a little bit.

Linda Rinaldi  12:06

Yes, definitely.

Zoe Rothblatt  12:07

So, what inspired you to start sharing your story? You know, you’ve done another video with us, now on The Health Advocates like what was the reasoning behind saying, let me get this out there?

Linda Rinaldi  12:18

If I can help even one person know what the heck this is, I will help one person because one person is one person, that’s not too many. One person is one person. And I’ve always wanted to help people that don’t know, so to speak, whatever I can do, I will do because I just don’t want anybody to be in pain and not know what it is and not be able to move.

Zoe Rothblatt  12:41

Yeah, I totally agree. That’s why I started sharing my story as well. Just like knowing how alone and scared I felt.

Linda Rinaldi  12:50

Yeah

Zoe Rothblatt  12:50

And not wanting others to feel the same and wanting to help reduce that experience for other people.

Linda Rinaldi  12:56

Right.

Zoe Rothblatt  12:57

And like you’re saying, if it’s just one person, it makes such a difference. That’s like a whole quality of life.

Linda Rinaldi  13:03

Yes, it definitely is. And if you can help one person, then that’s one person that you’ve helped, you know.

Zoe Rothblatt  13:09

And especially because PMR tends to get diagnosed later in life and I think a lot of people can make excuses around like, oh, this is just part of getting older and stuff like that. So it’s really important to spread the word to say like, if something feels off to you like it’s probably off and go call the doctor.

Linda Rinaldi  13:27

And don’t let it get to, I would say the point that I got to which I couldn’t move, but it happened so quickly that I didn’t even wait. You know, I just knew, I knew, that there was something wrong.

Zoe Rothblatt  13:39

Yeah, well, Linda, thank you so much for sharing your story with me and our listeners and like I love the messages of hope you left us with and like I hope you continue to work closely with your doctor and that your symptoms lessen.

Linda Rinaldi  13:54

I hope so too. Thank you very much. Thank you.

Zoe Rothblatt  13:58

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 on Apple podcasts and hit that subscribe button. Wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt, we’ll see you next time.

Narrator  14:20

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.

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. Today, we’re joined by Mallory Schmoll. Mallory’s a pharmacist with nearly 20 years of clinical experience in both retail and specialty pharmacy settings. She currently leads clinical pharmacy strategy, supporting the gastroenterology rheumatology and dermatology conditions across the Walgreens enterprise. So this week, it’s Crohn’s and Colitis Awareness Week, and we’re talking to Mallory about inflammatory bowel disease, what it is, the treatment landscape. We’ll also cover options available for treating Crohn’s and colitis, and how to talk to your doctor and pharmacist about these medications. So Mallory, welcome to The Health Advocates.

Mallory Schmoll  01:02

Thank you. Thank you for having me.

Zoe Rothblatt  01:04

Why don’t you start off by introducing yourself to our listeners?

Mallory Schmoll  01:07

Sure! My name is Mallory Schmoll and I’m a pharmacist with Walgreens with lots of clinical experience and then recently started exploring clinical pharmacy strategy with Walgreens. And I’m really passionate about helping patients with complex conditions like Crohn’s and ulcerative colitis, and also passionate about the role that pharmacists can play in managing those conditions and helping patients achieve goals of therapy. So just to expand if I can, on the role of the pharmacist really click, each patient has such a unique journey and is at a different point in that journey in whatever condition they’re dealing with. So while one patient may be trying to achieve remission and get their symptoms under control, another patient with Crohn’s or ulcerative colitis might be on cruise control and maintaining remission beautifully and just wants to take that long trip or go to a wedding and not have any flare ups. So I think pharmacists can really connect with patients on that individual level and meet them where they are and achieve those goals. So that’s kind of a little bit of background.

Zoe Rothblatt  02:08

Thank you so much. I’m so happy to have you here and hear more from the pharmacist perspective. Before we dive in a little bit more into that journey. Can we take a step back? And can you give us an overview of IBD, or inflammatory bowel disease?

Mallory Schmoll  02:21

Absolutely. And that’s a great place to start because IBD is often confused with IBS. So I think we can get that out of the way and clarify that and it’ll give us a great starting point. And actually, your GHLF website does a great job explaining the difference as well. So that’s a great resource. But while both IBS and IBD are chronic GI conditions. IBS is irritable bowel syndrome, and IBD is inflammatory bowel disease. So IBS is called a syndrome because ultimately, it’s a functional disorder or group of symptoms without any physical damage to the GI tract. There’s no physical damage detected on imaging like a colonoscopy, for example, and the immune system is really not involved. So the symptoms are still bothersome and can impact quality of life and do need appropriate management but there’s not any physical damage or autoimmune response. IBD, on the other hand, inflammatory bowel disease, what we’re focusing on today is an autoimmune disorder. Under the IBD umbrella is Crohn’s disease and ulcerative colitis. So those two conditions are types of inflammatory bowel disease. Because of the autoimmune component symptoms can appear outside the GI tract with IBD. So things like fever, joint pain, rashes, you would not get that with IBS, but you may with Crohn’s or ulcerative colitis. Ulcerative colitis is limited to the large intestine or colon and Crohn’s disease can cause damage at any part of the GI tract, even starting with the mouth. So things like intestinal bleeding can be seen in both and quality of life can really be impacted with IBD if the symptoms aren’t controlled.

Zoe Rothblatt  04:03

Thanks so much for that overview. So I’m hearing two things from you. One is the difference between IBS and IBD. And then two is under IBD, we have ulcerative colitis and Crohn’s. So really good breakdown there, as some of our listeners may know, actually, I have Crohn’s disease, so I’m pretty familiar and this week is Crohn’s and Colitis Awareness Week, which is run by the Crohn’s and Colitis Foundation and for me as a patient and health advocate, it’s a really great time to spread awareness and help share my story. Sometimes with a GI condition it can feel like a little embarrassing, or some stigma around with sharing your story. So it’s just like a really great chance to rally around as a community. But I wanted to hear from you as a pharmacist, why are awareness weeks like this important?

Mallory Schmoll  04:47

Yeah, I think awareness is so important Zoe and you know this and I appreciate you sharing that, because GI symptoms can be uncomfortable to talk about it feels personal and private, but it’s something so many people go through. Three million adults in the US have been diagnosed with IBD and there are about 70,000 new cases diagnosed every year. So this is likely not a journey that you’re walking alone. There’s lots of people affected and lots of support out there. I think awareness is so important because one in 10 people experiencing GI symptoms remain undiagnosed or misdiagnosed for about five years leading up to an accurate IBD diagnosis of Crohn’s or ulcerative colitis. So that’s five years of struggling with symptoms and not really knowing what’s going on before we get an accurate diagnosis. So hopefully, by talking about it, reducing the stigma and increasing awareness, we can get patients diagnosed sooner. Another thing is the majority of people that are affected by Crohn’s, or ulcerative colitis, are diagnosed between the ages of 15 and 35. So that’s pretty young, and that group of people is very busy. They’re usually working, they might be growing their family, having kids, working on their career. So sometimes that GI symptoms, especially, are just easy to push aside and chalk it up to something you ate but hopefully we can through our conversation, we can increase awareness and get those health concerns taken care of.

Zoe Rothblatt  06:13

And can you talk to me a little bit more about the challenges around IBD? You mentioned time to diagnosis. I know also all too well, that there’s a lot of challenges around treatment, too. Let’s hear more from your perspective about that.

Mallory Schmoll  06:26

Yeah, so some of the main challenges are, like you said, the time to diagnosis that can take five years or longer of struggling with symptoms to get an accurate diagnosis, then the other component is finding the right treatment. And that can be a process as well. Treatment for these conditions is highly individualized. So some therapies are oral, there are injectable options and their IV infusion options. And it can be a bit of an art, there can be some trial and error before we find the perfect therapy that’s controlling the symptoms the best. So our goal is really to help patients achieve remission, maintain remission and control inflammation. If we can do that we can improve patient’s quality of life and they can do things like travel and go to weddings and go to family events. So that’s really the whole goal. The challenge is that only about 20 or 30 percent of patients achieve remission from their initial treatment, it can take dose adjustments, possible medication changes, and other adjustments to identify what treatment will be the best at reducing symptoms and what treatment fits with your lifestyle. So that’s another piece of individualizing the treatment. Is a once weekly dose gonna work the best and how can we fit the medication dosing into your schedule, then the challenge if we can control the symptoms and achieve remission, the next challenge becomes maintaining remission. So of the patients that achieve remission and get their symptoms under control up to 50 percent will experience disease relapse or a disease flare in the first year. So flares require add on treatments like steroids, and those come with their own side effects. So one of the goals in maintaining remission is to reduce or prevent the need for steroids. So lots of nuances in the IBD treatment landscape. But those are just a few points.

Zoe Rothblatt  08:14

And can we talk about remission for a second? So IBD is chronic, which means it’s lifelong, like you mentioned, like symptoms can go away or flare up. Is there like an overall definition for remission? Or how can patients look at achieving remission?

Mallory Schmoll  08:30

That’s a great question. So achieving remission is usually defined by that initial control of symptoms. So just symptom relief from the bothersome GI symptoms and feeling a little bit back to normal having your quality of life back. That is the initial definition, then there are other ways to look at remission, there’s something called deep remission or clinical remission and that would be where we actually see the damage that’s been done to the GI tract that you can see on a colonoscopy or imaging, we would see that start to normalize or start to go away. So if we can first control the symptoms, and then get clinical remission, where we’re actually seeing less inflammation and less damage to the GI tract and more healing to the GI tract. That’s a continuation of remission as well.

Zoe Rothblatt  09:19

That’s really helpful, thanks. So it kind of seems like patients should talk to their doctor about what remission means for them and what those differences in clinical or symptom relief looks like for each individual person.

Mallory Schmoll  09:31

Absolutely. It’s such a relief to get that initial symptom control but still important to continue that relationship with your provider and pharmacist to be able to maintain remission and prevent those flares. It does take lifelong monitoring.

Zoe Rothblatt  09:45

So you mentioned that patients often encounter a trial and error, wait and see period with IBD. I know I’ve dealt with this and a bunch of my friends with IBD have dealt with this and it can feel a little frustrating at times, but also there’s a lot of hope baked into that it. So could you explain some of the reasons behind these phases and provide insights into what patients should anticipate during this time?

Mallory Schmoll  10:08

Sure. So it definitely can be frustrating if you try a treatment and it doesn’t work right away. So like we talked about, it can take a little bit of trial and error, and we have to give the GI tract time to heal from the medications. So it can take time to find the right medication, the right dose, the right schedule, and also where the side effects are minimal. Or ideally, there are no side effects.  So I’ve heard a lot of patients report symptom improvement within days or weeks of starting a medication, but there’s also a bigger picture. So once the symptoms are controlled, we have to see how long we can go without a flare, the longer the better. If we start seeing more flares, we’ll have to adjust the dose. And it’s just a lifelong process. So flares are going to come up they can be caused by stress or dietary changes. So figuring out the cause of the flares, whether it was a trigger, or there does truly need to be an adjustment in the medication is all part of that process.

Zoe Rothblatt  11:04

Yeah, something actually that’s really helped me is just paying attention to those symptoms and writing it down. Like even if it seems minor, it’s good to just write it down and kind of keep track of it. Because I guess I see my doctors like every three months or so and you could kind of forget what’s going on in the meantime. And like you said, it’s a process and things are changing, so just jot your symptoms down and then when you go to the doctor, you could bring it up and see if maybe that does classify as a flare, it was just a one off symptom there.

Mallory Schmoll  11:33

Right and it seems so elementary to keep a journal or to record those symptoms, but it’s so worth it. Because you might otherwise not be able to know what caused a flare up. Trying to remember oh, what did I eat the other day? Have I been stressed? Like trying to go through all that in your head, it’ll be so much easier if you have that written down and can identify a pattern.

Zoe Rothblatt  11:53

So let’s talk about the treatment options themselves. We’ve talked about kind of the process around them and what it looks like with communicating with your doctor and what you should pay attention to. But what treatments are actually out there available for treating Crohn’s and colitis?

Mallory Schmoll  12:07

Yeah, so a lot of these medications are a mouthful. But if you’re familiar with the conditions, you might recognize some of these names and choosing and starting a medication can be intimidating and confusing. So hopefully, it’s a shared decision making process between you and your provider and your pharmacist and you feel empowered to advocate for what will work best for your schedule, what concerns you have about side effects, and I would flat out ask that as the treatment options are discussed. What are the risks and benefits of every single option out there? So just to name a few drug classes that that might be a starting point for someone newly diagnosed, there’s a group of drugs called aminosalicylates, you might have heard of mesalamine, or sulfasalazine. And those can be used commonly for mild or moderate symptoms, and they control inflammation in the GI tract, they do work best if only the colon is affected by the disease. So another group might be corticosteroids that could be tried, and those are used for moderate to severe symptoms and also used for flare ups, they really kind of calmed down the overactive immune system, and will likely help you achieve remission, but they’re really not long term choices, because they do have quite a few side effects. So prednisone or methylprednisolone, are examples of those. Then you move into immunomodulators, so methotrexate, tacrolimus. Those are examples that lower the activity of the immune system and also reduced inflammation, probably most commonly what’s used are the biologics. And those are usually injectable medications that lower inflammation by actually blocking certain proteins in the immune system. So IBD is an autoimmune condition and if those other medications don’t work, then we use the biologics to take even more control of that overactive immune response. So some of where you start is actually also determined by insurance. Another important role that the pharmacist can play is helping navigate what insurance is going to cover and exploring financial assistance if needed as well. So it’s really a balance of what’s going to control the symptoms, what’s covered on insurance, what will work for your schedule and taking all those things into consideration to make treatment decisions.

Zoe Rothblatt  14:21

And then under the umbrella of biologics, we have sort of these newer kids on the block called biosimilars. Can you talk to us a little bit about those of what patients should expect to know there?

Mallory Schmoll  14:33

Absolutely. So biosimilars have been entering the market and multiple biosimilars for Humira entered the market in July and they’re getting a lot of attention right now. They are clinically equivalent to the brand name medication. So for example, we have Humira and we have biosimilars for Humira. They haven’t achieved the same status as generic medications, but they are clinically getting the same results as the original drug. So they have the chance to save the health system and potentially save patients a lot of money just like generics have in the past. So we’re kind of at the beginning phases of biosimilars entering the market and it’ll be interesting to see how that evolves. And the GHLF website actually has great resources on that. And don’t you all have a podcast on that topic as well?

Zoe Rothblatt  15:22

We sure do, and I’m actually the host of that podcast, so thanks for the shout out. Yeah, biosimilars can seem really confusing, and there’s a lot of questions around them. But I think it’s like at the end of the day, so you’re talking about like, talk to your doctor about the options, the risks and benefits and ask them lots of questions, also something with biologics and similarly, with biosimilars that I think a pharmacist can help you with is setting you up with the patient support program to help with the cost assistance as well.

Mallory Schmoll  15:50

Absolutely, really important to us, your full care team and all the resources available to you, your provider, pharmacist, all of that.

Zoe Rothblatt  15:58

And you know, outside of traditional medication treatments, I think it’s natural with the gut to think about supplements, vitamins, what other things IBD patients can do to help with their symptom control. Can you talk a little bit more about these like outside traditional pharmacologic methods for treating IBD?

Mallory Schmoll  16:17

Absolutely, and supplements and vitamins definitely have a role, and they can be an important part of treatment. So we want to maintain nutrition, especially if we’re talking about GI conditions that can affect the absorption of vitamins and nutrients, supplements may be really beneficial and help. But I would also encourage always asking a pharmacist or your provider before taking any supplements or vitamins, because they can sometimes have interactions with your prescription medication. So I would always just check a resource with your provider or pharmacist before starting a new supplement. Like I said, they definitely can help they can keep us healthy, they have a role in therapy, especially with GI conditions, but just making sure that it’s not going to do the opposite and interfere with the prescription medication or cause more harm.

Zoe Rothblatt  17:06

I’m hearing a lot about talk to your doctor, I think it’s really great advice. Can you give us what are some other questions that patients should be asking their doctors about their medications.

Mallory Schmoll  17:16

So always ask about the options. And we talked a little bit about this, but always ask about the risks and benefits of each treatment option that’s available to you so that you feel informed and to make the best decision and you’re going to feel confident that it’s going to work, it’s going to be effective, it’s going to fit within your schedule, the side effects will be minimal, that will give you more confidence in managing your condition and in the treatment itself. So ask about those risks and benefits. And then ask the doctor what they’ve seen in their clinical experience. So we can read online and the doctors can read in textbooks, but what have they seen from patients that they’ve worked with? What has worked well, in terms of nutrition for other patients? What have they seen cause flare ups? What may put you at risk for a disease flare? So anything that’s on your mind, I don’t think anything is off the table. Any question that’s on your mind, I would ask it’ll make you feel much more comfortable going through the treatment journey.

Zoe Rothblatt  18:11

It’s so true. Yeah, there’s no dumb questions. It’s your health and it’s your body and it’s so important to feel confident in the treatment you’re choosing and the shared decision making. And you know, as we have you here a pharmacist, can you talk to us about what questions you should ask your pharmacist or what role or pharmacist can play alongside your doctor in choosing these medications?

Mallory Schmoll  18:33

Yeah, absolutely. And pharmacists are so accessible, right? So you have appointments monthly or every few weeks or every few months with your provider, but pharmacists are there all the time. So, take advantage of that and don’t hesitate to ask them questions either. Pharmacists are really the drug experts. So any question you have about medications, side effects, also what they’ve seen in clinical experience. They’re a great resource and can also advocate for you with your provider. So the providers and pharmacists can make a great team and their knowledge can play off of each other to really give you the best care. I think pharmacists are also very familiar with financial resources for copay assistance and navigating insurance. So if insurance formulary prefers a specific medication, we can advocate for getting that approved for you work with the insurance, get the financial assistance and try to take some of that burden off your plate because you’re trying to manage symptoms and navigating a new diagnosis possibly so leverage your pharmacy to manage some of the insurance and administrative type burdens for you.

Zoe Rothblatt  19:37

Thank you. Yeah, that’s so helpful. Like we always say how having a chronic disease is like having another job and just knowing we have pharmacists like you to help in taking care of all those complicated things and the insurance terms that who knows what they mean it’s so hard to keep up something I’m so it’s really great to know that there’s resources out there for patients.

Mallory Schmoll  19:57

Absolutely. And one more thing is never feel like you’re bothering a pharmacist. Because, yes, we have to check the accuracy of prescriptions and make sure we’re dispensing the right medications. But I think every pharmacist would say the best part of their job is actually talking to patients and learning from them and being able to help provide education or help contribute to controlling those symptoms. So just never be afraid to ask any question.

Zoe Rothblatt  20:20

I love that. Thank you for that. And on that note of just like being real people in daily life, we talked a lot about symptom control and remission, but I wanted to just end on the note of like, what this all actually means in quality of life. At least for myself, you know, less frequent bathroom trips, and less pain has allowed me to have a better social life, a better working life and really be present in every day. And sometimes I’ll notice I’m a little more tired or have to step back then compared to my friends who are quote, unquote, healthy. But having a medication has really allowed me to live I guess, like normally you would call it sometimes there’s not such a great word for this. Can you talk to us from your perspective about how these medications can enhance quality of life for patients?

Mallory Schmoll  21:02

Yeah, thank you, Zoe. I think it’s so valuable to hear that from you as well. But the beginning of a diagnosis can be overwhelming and trying to get the symptoms under control. But once we get the medication right, and the dosing right, and minimize the side effects. I think like you said, having a great quality of life and really being minimally impacted is possible. Like you mentioned, you have to listen to your body, be in tune with your body. If you’re tired, or you feel symptoms coming on, listen to that and take steps needed to help yourself. But I think being able to take the vacations and being as social as you would like, I think all of those things are possible. So I think you just offered hope for patients struggling with these conditions.

Zoe Rothblatt  21:44

Thank you so much. Thank you for joining us today. And I just want to you know, reiterate your message from before about don’t be afraid to ask questions. There’s people out there to help you and hopefully this episode helps you feel less alone and more supported in your journey.

Mallory Schmoll  21:59

Thank you so much, Zoe.

Zoe Rothblatt  22:02

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 and write a review on Apple podcasts and definitely hit that subscribe button w you listen, it’ll help more people like you find us. I’m Zoe Rothblatt. We’ll see you next time.

Narrator  22:25

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, 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

And today we have our annual turkey day talking points episode, but first let’s chit chat. Steven, what are your Thanksgiving plans?

Steven Newmark  00:36

My plans are to eat a lot, a lot, a lot, a lot, a lot of food that my mother in law will be cooking so I don’t have to cook. I just have to eat. So I’m very excited. How about you Zoe?

Zoe Rothblatt  00:47

Same eating a lot. I think I’m most looking forward to the stuffing. I can’t believe we have to wait all year to eat stuffing. I’m kind of wondering why we don’t eat that more often. But what’s your favorite food?

Steven Newmark  00:58

That’s a good question. My favorite food is the sweet potatoes.

Zoe Rothblatt  01:02

Yes.

Steven Newmark  01:02

Sweet potato pie with the marshmallows. Yeah, that’s my favorite.

Zoe Rothblatt  01:05

That’s the best. You know, this year, actually, Thanksgiving comes right after we went to the American College of Rheumatology conference. And…

Steven Newmark  01:15

Yeah.

Zoe Rothblatt  01:15

I think that Thanksgiving is a nice time to just reflect on what you’re thankful for what you’re grateful for. Sometimes in busy life, it’s hard to take a pause and remember that.

Steven Newmark  01:24

Definitely.

Zoe Rothblatt  01:25

And this year, I’m just really feeling a ton of gratefulness after the conference. One is the researchers and doctors that are doing so much to study these diseases and learn about them so they can provide better care for their patients. But most of all, I got to meet some of the advocates that we work with in person who I’ve known online for a long time. And it was just really nice to see the sense of community. I was actually talking to a friend who is going into surgery, and she had been at a surgical conference where there was no patients who attended. And I was thinking about the difference in that community vs. ours, and how…

Steven Newmark  02:00

Wow.

Zoe Rothblatt  02:01

You know surgery can often be like a one off thing and there’s not so much of a sense of community as there is in this chronic disease rheumatic community. So I was just feeling so grateful that we have that and like how exciting it was that it’s more than just somebody else living with the disease. But like, these are our friends. And it was nice to get together.

Steven Newmark  02:19

Yeah, that is fantastic. And you’re very lucky that you got to be with such great advocates such greed, patients, and it was fascinating listening to the interviews that you were able to do out there at ACR. So thank you for that. So I guess I’m grateful to have the opportunity to listen to those podcasts. And I’m grateful to be part of an organization with such great people on such great volunteers.

Zoe Rothblatt  02:41

Yeah, and we can’t forget our 50-State Network of advocates. You know, we’re so grateful for all that you do, and all that you advocate for. And today, we wanted to pick out you know, one topic from something we advocate for to have a conversation at your Thanksgiving table. It’s a really great time when families gathering and walls are down. Everyone’s eating good food and feeling all buttered up. So it’s a nice time to talk about what’s going on in your life and how you advocate.

Steven Newmark  03:09

Yeah, absolutely. This is my favorite episode of the year to record. Every year we talk about folks get together for the holiday and like you said, it’s a good time to bring forward some of the issues that we deal with as patients and as patient advocates to help your loved ones understand what it is that you’re going through, and perhaps even recruit them to be fellow advocates on your behalf. So let’s get into it. Let’s talk about the kinds of conversations that you could have and we’ll specifically focus this year on copay assistance. So let’s get into it.

Zoe Rothblatt  03:38

I think it’s really important, you know, step one is like how do you even start a conversation? Sometimes it can feel so awkward, especially if you know people around you don’t live with these chronic illnesses or advocate in the way you do. So I think a really easy…

Steven Newmark  03:52

Yeah.

Zoe Rothblatt  03:52

Level set that I usually use is just explaining why I got involved in the 50-State Network and advocacy, I share my story, I try to keep it brief, just explaining a little bit about the journey to diagnosis and how challenging it was and how now having access to affordable care and treatment has really helped me feel a lot better. And I think that starting on that personal note helps bring people in and understand it a little better.

Steven Newmark  04:19

Yeah, I fully agree. And once you’ve got them, sort of that’s the hook is your story, your personal story, you can then get into the discussion. And as I said, for this year, we’re going to focus on copay assistance. We’ll start with what is copay assistance, a copay assistance card, also known as a copay savings program, copay coupon or simply a copay card is essentially a coupon that makes a medication way less expensive for you as a patient. You simply sign up for the program, download or get your card in the mail and you show it at the pharmacy when you go to fill your prescription. Instead of paying a high copay, perhaps $50, $75, or even more, depending on the specifics of your insurance coverage, you pay a lot less. In some cases you might not owe anything at all.

Zoe Rothblatt  05:00

Yeah, I love these. I use them myself. And it often brings my copay down to $5 or zero, which is so nice because these are meds that I have to order every single month. So it does make a huge difference in order to not have to pay that high cost.

Steven Newmark  05:16

Yeah, no, absolutely, absolutely.

Zoe Rothblatt  05:18

But then like all things health insurance, it can’t be that simple in comes, copay accumulator adjusters and maximizers. Steven, why don’t you tell us about those.

Steven Newmark  05:28

Sure. Accumulators and maximizers essentially stop the patient assistance from counting towards your deductible and out of pocket maximum. This means that the insurer or the pharmacy benefit manager, PBM, is receiving the benefit of the assistance because the patient is able to purchase or able to obtain the medication, but the patient is not actually getting the full assistance as needed.

Zoe Rothblatt  05:52

Yeah, it’s almost like you’re paying twice because like someone’s paying on your behalf, sure. But that money is not going towards these deductibles and out of pocket maximums that need to be met. So you still have to pay that. So it’s like, why is the patient so responsible financially.

Zoe Rothblatt  06:09

Right, it makes it more difficult, essentially, to reach your out of pocket maximum if the drugs that you’re attaining are not counted towards that maximum.

Zoe Rothblatt  06:17

The good news is that there is something to do about these programs, you know, our network advocates strongly for laws among the states and federally that helped pass protections so that insurance companies cannot do this to patients.

Steven Newmark  06:30

Yeah. In fact, 19 states have passed laws to protect patient assistance programs with these are laws that ban accumulators and maximizers, our 50-State Network advocates at the state and federal level have fought in support of these laws.

Zoe Rothblatt  06:43

And it’s been many years of fighting for these laws. I think there’s been a lot of momentum in the last year or two. And it’s going to be a priority in 2024, which is why we’re talking about it today. Because it’s something that’s great about policy and advocacy is when there’s momentum around the issue, it’s like really good to keep talking about and getting the ear of legislators. So that’s why like this year, it’s especially important because we’ve seen like a good growth in states passing these laws.

Steven Newmark  07:09

Yeah. So why would anyone be opposed to these laws that help patients save money?

Zoe Rothblatt  07:13

So true, wondering the same myself. So, it’s always important in policy making to think about what is the other side arguing and basically, insurance companies as an pharmacy benefit managers say that these laws will actually increase the insurance costs, so premiums, the monthly amount that patients pay towards to get their health insurance, and they say that, you know, the money will just go elsewhere, doesn’t matter if you’re saving there, it’ll increase premiums,

Steven Newmark  07:42

Right, so they’re saying, hey, we’re going to increase premiums. However, studies notably done by GHLF demonstrated that banning accumulators and maximizers had not increased the cost of health insurance in the states with such laws. Since then, six more states have passed laws protecting patient assistance. So another year of health care costs have become available for us to look at since our initial study passing laws that protect patient assistance by banning accumulators and maximizers still has not led to an increase in insurance costs.

Zoe Rothblatt  08:11

This is great because we’ve been telling patients stories for a long time about how important copay assistance is and how damaging it is financially when these accumulators or maximizers are in place. But having the data to support the counter argument is so valuable when we’re having meetings with legislators and stakeholders.

Steven Newmark  08:32

Absolutely, absolutely. So this is it. This is what you do you engage in a conversation it takes about what was that five to seven minutes going at a very slow pace, and you explain to your friends, so you encourage your friends and family to become advocates in our 50-State Network. And if you have a story about using copay assistance and encountering and accumulator or maximizer, or please email us at [email protected].

Zoe Rothblatt  08:54

Yeah, definitely email us. Also share with us what you’re thankful for this year.

Steven Newmark  08:58

Yes.

Zoe Rothblatt  08:58

We love from our listeners.

Steven Newmark  09:00

Yes, yes, yes. As we said, we’re grateful for all that you do on behalf of patients. And it is exciting, just going back to the co pays and maximizers, it is exciting when we get to advocate at the state level and go to a state capitol and then we find out that particular state passed a copay accumulator ban, for example. It kind of energizes you to keep going, if that makes sense.

Zoe Rothblatt  09:23

100%, it’s so energizing. And also we often get to bring patients in the community advocates along and it’s really great to feel like we’re all in it together.

Steven Newmark  09:33

Yeah. Well, thank you again, and we’re grateful for all you do.

Zoe Rothblatt  09:38

Well, Happy Thanksgiving everyone. Thank you 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 on Apple podcasts, and definitely hit that subscribe button wherever you listen. And if you have any questions, comments episode topics, email us at [email protected]. I’m Zoe Rothblatt.

Steven Newmark  10:02

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

Zoe Rothblatt  10:04

Happy Thanksgiving.

Steven Newmark  10:05

Happy Thanksgiving.

Narrator  10:10

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.

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 and I’m live at the American College of Rheumatology 2023 convergence. And I’m here in the poster hall at the patient perspective posters with Shelley Fritz. Hey, Shelly, how are you doing?

Shelley Fritz  00:25

I’m doing great, Zoe. Thank you.

Zoe Rothblatt  00:27

Why don’t you start off by introducing yourself to our listeners?

Shelley Fritz  00:31

Hi, I’m Shelly Fritz. I am a patient advocate and I’m a patient fellow with Global Healthy Living Foundation.

Zoe Rothblatt  00:37

And we’re here at your poster that’s called, “Saved by Plants: How a Necessary Lifestyle Change Led to a Happier Life with Decreased Rheumatoid Arthritis Pain and Fatigue.” So tell us about the inspiration behind this poster. And what are the main findings here?

Shelley Fritz  00:50

Well, the inspiration was I was not feeling as well as my bloodwork showed that I should be feeling. And because my bloodwork looked great, and my rheumatologist felt really happy with that I had been tracking my pain, my fatigue, my sleep levels, and some other symptoms from my rheumatoid arthritis using the ArthritisPower app, which is now called Patient Spot. And I have been tracking it really ever since it was in a beta version in 2015. But I decided to follow the RA integrative treatment guidelines, which said that the Mediterranean diet is conditionally recommended, and I thought, well, why not try it? I haven’t tried that. I’ve tried seven biologics. I’ve tried lots of medication combinations that haven’t quite done the trick to keep my fatigue low and give me a good night’s of sleep and help me with my pain levels. So I decided to implement the Mediterranean diet.

Zoe Rothblatt  01:41

And how’s that going for you?

Shelley Fritz  01:42

It is going great. My key I think was dropping processed foods and red meat. That had been a big part of my diet. And now it’s not. I dropped sugar, for the most part. I already was eating gluten free and dairy free. But because the Mediterranean diet is plant based at its core, it’s really helped me to minimize my inflammation. And I tried the diet for four months tracking fatigue, my sleep disturbance and my satisfaction in social roles. I really didn’t want to go out, I didn’t feel well. So I didn’t want to go out and do anything with friends. So I decided I track it for four months, but I’m still on it. That was months ago. And I’ve stayed on it because I feel better. My fatigue levels are really low. I can sleep now. I’m out at this conference and I’m presenting and I feel great.

Zoe Rothblatt  02:27

That’s awesome. I think that oftentimes it feels almost intimidating to try and start a diet. What’s your advice to patients who are looking to do something like this?

Shelley Fritz  02:36

I think that if you start small, I brought it in a little bit at a time, I didn’t just drop everything and throw out all my cereal and protein bars and things like that, you know, I eased into it. And I also got my husband on board. It helps if you live with your partner, that your family that your friends that other people support you. They don’t have to be on the same meal plan as you but they just need to support you. So I stopped buying junk at the story stayed out of the center of the store, and I only go to the perimeter now.

Zoe Rothblatt  03:05

That’s awesome. Thanks, Shelley. And finally, what does it mean to you to be able to present your poster like this at ACR?

Shelley Fritz  03:11

It means so much. I’ve spoken with so many different people today, scientists, I’ve spoken with people from the industry, other patients too. I’ve shared the app with several people today who didn’t know about it and are interested in tracking their own symptoms. So it’s just been great to be able to share my story and share something that worked for me.

Zoe Rothblatt  03:29

Awesome, thanks so much for joining us on The Health Advocates. [Shelley] Thanks, Zoe. [Zoe] Well, everyone thanks for listening to this special episode 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 like this episode, please give us a rating, write a review on Apple podcasts and definitely hit that subscribe button wherever you listen. And if you have any questions, comments, episode topics, please email us at [email protected] I’m Zoe Rothblatt live from ACR.

Narrator  04:01

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 and I’m live at the American College of Rheumatology 2023 convergence standing in the patient perspectives hallway of the posters with Eileen Davidson. Hey, Eileen, how’s it going?

Eileen Davidson  00:26

It’s going great.

Zoe Rothblatt  00:27

Why don’t you start by introducing yourself to our listeners?

Eileen Davidson  00:29

All right, well, my name is Eileen Davidson, or online people know me as Chronic Eileen. I’ve been a writer with CreakyJoints since 2019 and on social media a lot. I’m also a patient partner with Arthritis Research Canada and various other organizations. So research is something I’m really passionate about, as well as education.

Zoe Rothblatt  00:46

And we’re standing in front of your poster titled “You Can’t Get This From a Doctor: The Role of a Support Group for Young Adults with Rheumatic Diseases.” Can you tell us about the inspiration behind the poster and the main takeaways?

Eileen Davidson  00:58

Yeah, so I was made aware of a grant that the Arthritis Society was hosting. And I looked at it and I was like, I’m going to apply for this, but I needed to come up with an idea. And given that I had gone through the pandemic like everybody else, it it caused a lot of isolation and loneliness, especially being somebody who lives with a rheumatic condition. So I wanted to get out of that funk that the pandemic kind of had put me into. And then I also remember, like, the educational classes that I had gone through before, but they were really dry. They’re only like, clinician instructed, there was no time for patients to talk and just kind of sit there in a room and hear from them. But I could tell like you were able to talk a little bit, patients are really wanting to talk to each other, but there was no opportunity to. So it kind of dawned on me like, well, why not create a support group where I can have these perspectives of clinicians that I know through Arthritis Research Canada, come in, talk to us for two hours, focus on themes that are important to people living with arthritis, like fatigue, mental health, sleep, work, relationships, art, exercise, and why not make it fun and supportive? So the whole point of my program is to show support gives people more resources, information on their disease, I know a lot of somebody who participates in research, plus all the clinicians and researchers that I would involve. And then also just hearing from other patients, it’s so important, we speak a different language to each other. And that’s not something that a doctor can offer. So it was important for me to create this because I saw the need, especially for people and age range of 20 to 50s. Because there’s lots of support groups for children with diseases or their support groups, senior groups, things like that, but nothing for my age range. And I also wanted to make it fun. So we do different activities like exercise programs, and every session I pull up art supplies, because art is very therapeutic. So people can create art while we talk and do things. And yeah, it’s been a really rewarding experience. And the whole reason I’m here presenting at ACR about it is I’m hoping to influence other people in other organizations to create kind of grants like this or opportunities for support groups, because it is so needed. Online ones are great, but they’re just not the same as in person.

Zoe Rothblatt  03:07

Yeah, that’s awesome. I mean, it’s amazing to hear about you bringing the community together. I’ve known you online for so long, we’re finally meeting in person and it’s also nice to like get the sense of community here at ACR, what does it mean for you to be able to present this at ACR?

Eileen Davidson  03:23

Well, it definitely means a lot. It’s not easy to get here, you know, you got to have some insider information on when to apply, how to have support from other organizations, things like that. So it definitely means a lot. I take it very serious. I might want to educate others. I want to learn more. I want to inspire others, like I said, hopefully there’s gonna be some more arthritis social hours popping up elsewhere.

Zoe Rothblatt  03:45

And what’s been a highlight for you so far in the conference? [Eileen] Obviously, meeting you!  [Zoe] Okay, what else?

Eileen Davidson  03:51

Well, that the patient perspective posters are actually in the poster hall this year.

Zoe Rothblatt  03:55

Yes. snaps to that, right.

Eileen Davidson  03:57

Yeah. So, I feel like the conference is only just started. I haven’t even seen many of the highlights yet. But I guess just being here, the people that I get to connect with the things that I’m going to be learning.

Zoe Rothblatt  04:10

Awesome. Well, thank you so much, Eileen, for joining us on The Health Advocates and enjoy the rest of the conference.

Eileen Davidson  04:15

All right, thank you so much.

Zoe Rothblatt  04:18

Well, everyone thanks for listening to this special episode 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 like this episode, please give us a rating, write a review on Apple podcasts and definitely hit that subscribe button wherever you listen. And if you have any questions, comments, episode topics, please email us at [email protected]. I’m Zoe Rothblatt Live from ACR.

Narrator  04:45

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.

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 and I’m live at the American College of Rheumatology 2023 convergence, and I’m here with Cheryl Crow. Hey, Cheryl.

Cheryl Crow  00:22

Hi. It’s so great to see you in person.

Zoe Rothblatt  00:24

It’s so great. We’ve been internet friends for a while, and we finally met. But why don’t you start off by introducing yourself to our audience?

Cheryl Crow  00:31

Yeah, hi. So I am an occupational therapist. And I’ve been living with rheumatoid arthritis for 20 years. And I run my own podcast called Arthritis Life and some patient education and support groups called Rheum to Thrive.

Zoe Rothblatt  00:41

And how did you originally get involved with ACR? What brings you here?

Cheryl Crow  00:45

Yeah, at first, I was doing a research project for occupational therapy on actually the power of social media groups for a community and connection between people with rheumatoid arthritis. And then I ended up meeting a whole bunch of other people at the conference and realized how much fun and how exciting conferences were. So now I just come to them all to learn.

Zoe Rothblatt  01:05

And you’re giving two talks this year. Could you tell us a little bit about both of them?

Cheryl Crow  01:10

Yeah, I’m on two different panels. So the first one is all about actually tips for starting your own rheumatology themed podcast, actually Zoe, you would be amazing on that panel too. And I’m going to be speaking specifically about using social media to amplify your podcast content. And then on Tuesday, I’m going to be on an interdisciplinary panel about meeting the comprehensive needs of people with rheumatic disease at work beyond just ergonomics and pain, but looking at how fatigue and psychosocial factors make work difficult for so many of us.

Zoe Rothblatt  01:41

And what does it mean to you to be able to present that ACR is both someone living with rheumatoid arthritis, but also as an occupational therapist?

Cheryl Crow  01:49

It’s really incredible. I’ve had previously been to occupational therapy specific conferences, which are fantastic, but there is something really special about a multidisciplinary conference. I’m talking to, you know, pharmacists, nurses, rheumatologists, nurse practitioners, patient partners, researchers and a nonprofit associations, drug companies. There’s just everyone’s here. And so there’s just a overall like vibe of excitement and enthusiasm. And I will say, as a patient, it’s particularly gratifying that I found rheumatologists and rheumatology providers have really been welcomed my patient voice like they’ll say, I want you to come on this panel, not just as an occupational therapist, but also because we honor your perspective as a patient. So that’s very gratifying.

Zoe Rothblatt  02:30

Yeah, that’s awesome. I mean, we’re standing here in the poster hall and the patient perspectives section. And it’s so fun, like coming up and meeting everyone tell me what’s been a highlight for you so far.

Cheryl Crow  02:41

Oh, my gash, literally, I haven’t even done very many things yet. And already, I can’t even choose a highlight. But I think I just saw a poster by Dana, that is all about like the power of creating your own data tracking for symptom tracking, she made her own tracking method. And for me, I really think the more practical tips and tricks I can take away from this conference, the better. So that really stood out to me, she actually had a QR code that you can download her exact Excel sheet tracker. On that same note, this morning, I went to a great session on oral health and tooth care for rheumatic disease. And I’ve been having some jaw pain lately. And they had some really specific tips, like ways to do like your own self massage for your jaw. And so you know, there’s just so many things like that here. And I’m looking forward to learning even more, especially about fatigue. That’s the main thing I made one goal for myself at this conference is to really have some specific takeaways for fatigue. And there’s some great posters on that tomorrow. So yeah, I guess you asked me for the highlight. I can’t even choose one already.

Zoe Rothblatt  03:40

No, I love that. I mean, yeah, the goal of us chatting now is to bring it back to the community for everyone who can’t be here. And I’ll say, a highlight for me, obviously, is meeting you. [Cheryl] Oh my gosh how can I forget? [Zoe]Also, this is audio only, and people can’t see that Cheryl made friendship bracelets. So I now have an arthritis lifeline. And it’s been so fun watching Cheryl, go around and share them with others. And just the sense of community that has brought to the conference and connecting patients together has been awesome.

Zoe Rothblatt  04:08

Awesome. Cheryl, thanks so much for joining us on The Health Advocates and enjoy the rest of the conference.

Cheryl Crow  04:08

You’re so kind and I do want to give Dr. Jeanne Liu who goes by Rheum_Cat on Twitter, I want to give her credit. That was her idea. I know you and I are both big Swifties she is too and she had the idea to connect the idea of friendship bracelets from Taylor Swift concerts to hey, why instead of just making these for concerts, let’s make rheumatology ones and yeah, it’s been a great icebreaker. I’ve met people in the elevators or on the escalators just being like, hey, do you want a bracelet? And it’s been really fun. So thank you. And yes, meeting you was delightful, of course.

Cheryl Crow  04:41

Thank you so much. You too.

Zoe Rothblatt  04:44

Well, everyone thanks for listening to this special episode 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 like this episode, please give us a rating write a review on Apple podcasts and definitely hit that subscribe button wherever you listen, and if you have any questions comments episodes topics, please email us at [email protected]. I’m Zoe Rothblatt live from ACR.

Narrator  05:11

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 and I’m live at the American College of Rheumatology 2023 convergence, and I’m here at the patient perspective posters with Dana Guglielmo. Hi, Dana, how are you? Why don’t you start off by introducing yourself to our listeners?

Dana Guglielmo  00:30

Sure, thanks Zoe. My name is Dana. And I’m here at ACR presenting my patient perspectives poster, I am a patient with rheumatoid arthritis. And I live in LA.

Zoe Rothblatt  00:40

And tell us about your poster. I’m here looking at Dana’s data dashboard. How did you decide to put this together?

Dana Guglielmo  00:46

So I do public health research. And I work with a lot of data in my job. And I feel really confident managing large volumes of data, analyzing it, presenting it at work, but I realized that with my health management, I felt like I was like, very disorganized, things were falling through the cracks. I wasn’t getting my routine labs. And so I realized that I just wanted to change my approach. And it’s worked out really great. I’ve gotten much more organized, and I’m on top of things now. And I feel like I’m approaching it the same way I would approach my job.

Zoe Rothblatt  01:19

That’s awesome. And I love that you’re taking control of your health. I’m looking at your poster here, and I see different categories like vaccines or rheumatology. Could you walk us through the dashboard and how you decide what to put where?

Dana Guglielmo  01:31

Sure, absolutely. So with each specialty, I list the condition, a high level summary of how things are going like excellent, you know, needs help really needs an action, the status. And so when I go to all my different appointments, such as like a rheumatology appointment, I can I just show the dashboard. And yeah, if a lot of it is green, then it means that things are going really well. If it’s like yellow or red, then it means that you know, there’s changes that need to be made. And then as far as the provider information, basically, I just wanted to streamline this so that way, if I have an appointment, I can just click it, and then it’ll pull up directions. Or I can just click it and it’ll call the doctor. And then the other one is a treatment, I decided I never want to list out all my medications and dosages again. So I do it on my dashboard, and I print it out. And then I can just cut and paste it onto the new patient form. So it saved me a tremendous amount of time.

Zoe Rothblatt  02:26

That’s awesome. I always hate how little room there is to write all of your medications. This is so smart. And finally, could you tell us what it means for you to be here at ACR and what you hope people learn from your poster?

Dana Guglielmo  02:40

Sure. So it means so much to me to be here at ACR, I really value that ACR is really good about incorporating patient voices into research and practice as well as their clinical guidelines. So I feel really valued here. And as far as what people can take away from my poster, there is a template with like a starter dashboard, if you want to copy that and just, yeah personalize it, make it into something that works for you. Or the other thing is I really want people to take away that you should really identify like what your own strengths are and try to bring that into your health management. Like let’s say like you’re not a data person, but you really love art, you can turn it into like an art project or something that really speaks to you. So I hope that people take away that inspiration.

Zoe Rothblatt  03:25

That’s great. Thank you so much. And we’ll put a link to your dashboard template in the show notes so everyone can see it. Thanks so much for joining us on The Health Advocates, Dana.

Dana Guglielmo  03:34

Thanks for having me, Zoe.

Zoe Rothblatt  03:37

Well everyone thanks for listening to this special episode 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 like this episode, please give us a rating write a review on Apple podcasts and definitely hit that subscribe button wherever you listen. And if you have any questions comments episodes topics, please email us at [email protected] I’m Zoe Rothblatt Live from ACR.

Narrator  04:04

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.

Steven Newmark  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. Today’s episode is part of a special three part series focusing on polymyalgia, rheumatica or PMR. Over the course of these episodes, we will speak with a physician and a patient who deals with PMR in their daily lives so that we can get a better understanding of PMR and the journey that patients go on to find treatment.

Zoe Rothblatt  00:44

And today, we’re very excited to speak with a longtime friend of our organization and incredible advocate for patients and physician Dr. Grace Wright. Welcome, Dr. Wright.

Dr. Grace Wright  00:54

Thank you so much for having me. I’m so delighted to be here.

Zoe Rothblatt  00:58

Do you want to start by introducing yourself to our audience?

Dr. Grace Wright  01:01

Sure. So I am a consultant rheumatologist in New York City. And I see patients across the spectrum trained in New York, actually at the NYU School of Medicine and served as Clinical Associate Professor of Medicine there and really spend my time now in my practice, as well as leading the amazing organization, the Association of Women in Rheumatology, in which we help fight for the rights of our physicians and our patients and educate across the spectrum about our diseases and the importance of equity in the management of rheumatic diseases.

Zoe Rothblatt  01:34

Well, thank you, Dr. Wright, for all you do, and for joining us today to help us better understand polymyalgia rheumatica.

Dr. Grace Wright  01:40

Oh, it’s my pleasure to be here.

Steven Newmark  01:42

So let’s begin. Dr. Wright. Thank you, again for joining us. So why don’t we begin with the basics, what exactly is PMR, and how is it different from other types of arthritis?

Dr. Grace Wright  01:50

So as the name polymyalgia implies, this is a disease in which there is stiffness and achiness as people perceive it in their muscles, but the important muscles are in the shoulder area and in the hip area. So you may feel pain and stiffness that’s in the neck, the shoulders, the upper arms, or in the hip and the thighs as well. And most often, this can be something that sort of gradually builds. But for some people, they get up one day and they’re stiff. The things that make you aware of what that stiffness is, is you have difficulty getting out of a chair, you find yourself using your arms to push up because your hip is so sore, or raising your arms up to brush your teeth, you know, get some food brush, your hair. So it’s a sort of thing that if you don’t really think about it, you don’t realize it’s happening until you walk in sort of with this, “oh my gosh, I have so much difficulty I need to stretch, and I’m in pain all the time.”

Steven Newmark  02:44

So a quick follow up is PMR curable or is it chronic?

Dr. Grace Wright  02:47

So PMR can be managed quite effectively. And for many people, we can treat them get rid of symptoms, get them off medicines, and they go along quite happily, others may need to be on a longer course of medicine. In fact, this disease tends to occur in the later ages. So in late 60s and 70s. And we say if you’re younger than 50, then we should think of something else. But this is a disease that is typically seen in 50 years and older. So we have to think of other things that this could be is this osteoarthritis, is this something that’s affecting the spine and causing pinched nerves? A variety of things, but really, that’s really how that starts and how we manage it.

Zoe Rothblatt  03:25

Can you tell us a little bit more about that diagnosis process? And is it easy to diagnose someone with PMR? You’re saying it could mimic some other conditions perhaps? And yeah, tell us how easy or difficult and what kind of things you look for.

Dr. Grace Wright  03:38

Yeah, so you know, typically a person would present to their primary care provider saying I have pain or stiffness in my hips or my neck. And that is such a general complaint that often the first thought is this person has arthritis or a pinched nerve. And so they go down that path, things that make it a little clearer for us or when we look at the blood test. And we see for instance, that the blood count may be low. So the red cell count or the hemoglobin, or hematocrit, those are all measures of the same thing that there’s a mild anemia, or that the things that we use to measure inflammation in blood, such as the sedimentation rate and the C reactive protein to other blood tests, those can be quite high. And so when we look at the high inflammatory markers separate and CRP, a mild anemia and the complaints, then polymyalgia rheumatica rises to the top of that diagnosis. But just seeing the complaints doesn’t often make it clear because many other things can sound the same, but present quite differently when you look at the bloodwork.

Zoe Rothblatt  04:36

And have you noticed any shortcomings in the diagnosis process or the treatment process when it comes to polymyalgia rheumatica?

Dr. Grace Wright  04:44

Yeah, so one of the biggest issues we have is that there’s a huge delay between when that person feels the first symptoms and when they get to a rheumatologist to get proper treatment because for rheumatology, this is how we think right we put PMR kind of much higher on the list of things that we’re thinking about. But a primary care provider may really sort of believe this is arthritis of the spine. And for some patients, if it’s not so clearly localized, you start to think, well, maybe it’s rheumatoid arthritis because I can give you pain and shoulders and pain in the hips. But that tends to involve hands and feet as well. There’s another area of diagnoses in which this can evolve called vasculitis, where the inflammation is actually in the blood vessels. And there in fact, some people who start off as PMR and evolve into giant cell arthritis or one of these kinds of vacular diseases. So there may be quite a length of time between when you first feel symptoms, and we come up with the right name. And that’s time that we want to shorten so that you can get on treatment much more quickly.

Steven Newmark  05:45

Moving over to prevalence, how prevalent is PMR compared to other types of arthritis, such as rheumatoid arthritis, psoriatic arthritis, axial spondyloarthritis.

Dr. Grace Wright  05:55

Yeah, so that’s a great question. If we do an age cut and say, if we’re looking at the 60 and 70 year old, it is probably the most common of our inflammatory arthritides, because that’s where it is, it’s really in the above 50, whereas rheumatoid, you’ll see made 20s and 30s, and 40s, and even some teenagers and children with rheumatoid arthritis. So if you look at that age group, and you say there’s inflammatory arthritis, that is just starting PMR should be the top of the list, you know, because it’s about 750,000 people in the US about two thirds of who are women and 1/3 men, it’s a little bit more prominent in women, a bit more prominent in people of Caucasian descent. But again, it has not really been looked at in those of other descents such as Asian and African ancestry. So we may be underreporting in that group. But again, it is not an uncommon or rare disease in an older group of people. And

Zoe Rothblatt  06:48

Dr. Wright, as someone who treats PMR patients, what’s your biggest advice for people who are seeking help for PMR? You mentioned there’s a big gap in time to diagnosis maybe what are some things that patients should bring up with their doctor if they’re experiencing and how can they ease their pain in everyday life?

Dr. Grace Wright  07:08

Yes, sure. So there are definitely strategies that the patient can do. But there are lots of things that we can do as healthcare providers. And I think the most important thing always in rheumatology is to remember the story is the most critical. So I want to know, when did you have this? When does it bother you the most? Is it when you get up in the morning that you’re stiff? How are you functioning in your daily things? The part that’s a little deceptive is we accommodate around our pain and dysfunction. (Zoe) Right. (Dr. Wright) You find yourself doing things differently, you say, well, no, my shoulders work. But you can’t get it above your head! Well, then I just lift my whole body up, or I put this on a lower shelf. It doesn’t make it go away. It’s just that we’ve learned to sort of work around it. So it’s really important to think about have I changed the way I function in order to function? That becomes a key clue to me that there’s something wrong, that my hips are stiffer that my hips hurt, am I doing fewer walks? Am I not taking the train or walking upstairs, because I’m avoiding pain? Not just saying, oh, I don’t have pain, because I figured out how to deal with it. That’s just having the disease control you, not you controlling yourself and living outside of that. So it’s important to really sort of think through that particular thing, because we hide things from ourselves. And then thinking about am I more fatigued because fatigue comes with this so that I can come in with a list of carefully thought out things. Now, if somebody mentions that they think you have PMR, ask to see a rheumatologist because we are a lot faster at honing to this diagnosis compared to all of the others that it could be. What I really don’t like to see somebody who’s 60 years old, sort of popping a lot of nonsteroidals over the counter pain medicines, because those come with risks, and they don’t actually get rid of the disease. So we have more effective therapies to do that. And this way, we can shorten the time on drug shorten the amount of time you’re suffering and get you to a more effective path of treatment.

Steven Newmark  08:59

Well, yeah, that kind of resonated with me, I know you didn’t say it like this, but sort of covering up an injury or an ache and just compensating in different ways. And instead of actually addressing the need, I think that’s really important for folks to understand that those things can be addressed rather than worked around. In fact, you know, this entire conversation has really been enlightening and helpful. One final question, Dr. Wright, before we wrap up what resources are currently out there that can help patients cope with the physical and mental challenges of living with PMR?

Dr. Grace Wright  09:26

Well, for certain there are lots of resources in the patient space and in the physician space, right? So going to the American College of Rheumatology, they have patient the material for what the symptoms are and how this treated. Global Healthy Living Foundation has lots of resources to help us think through not every pain is the same pain. Not every pain is the same diagnosis. Arthritis Foundation also has important resources, but I think really speaking with your doctor, with your health care provider to say is this something that is appropriate for my age or not? So that we can get you because there really are lots of things that we can do so that you’re not just living with the disease, you’re actually conquering the disease. Right? For me, the way that I like to approach is how do I get rid of this so that I could get on with life different from how do I sort of live with this and modify my life around it?

Dr. Grace Wright  09:27

Yeah, absolutely. Well, we’re hopeful that podcasts like this and other resources that we put out, and others that you’d mentioned will add to help benefit patients moving forward. And we thank you, again, for joining us. And we learned a lot, and I’m sure our listeners did too. Before you go. Is there anything you’d like to discuss while you’re here today?

Dr. Grace Wright  10:27

Sure. Just to say that, you know, one of our focuses, we’re aware of the was using acronyms, right, this Association of Rheumatology, right. So we do a lot of work to really drive the importance of equity and advocacy for all patients. I mentioned that sometimes we underestimate prevalence of disease, because nobody’s looking at a certain population of patients. And when we look at our patients of Latin ancestry of African ancestry, we’re not actually asking these questions. And sometimes these diseases go unrecognized. So be a part of the community in which we’re researching and asking and aware is doing a lot to try and get clinical trials and research to people who are actually suffering from these diseases so that we can make sure that we’re asking the right questions, and that we’re creating the right therapies that will work for everyone wherever they come from, or what their ancestry is. So check us out. We’re really happy to partner with Global Healthy [Living Foundation] on a variety of these initiatives, because equity matters.

Steven Newmark  11:29

Yeah, absolutely. It’s certainly a topic that we’ve discussed a lot. And we’ve spoken a little bit about AWR as well on this podcast. And so our listeners hopefully will know the great part that you guys are doing already.

Zoe Rothblatt  11:39

Thank you so much for joining us today and for helping break down PMR. I know while there are a lot of resources out there, there’s still more conversation to be had. And we really appreciate your time. Thank you, Dr. Wright.

Steven Newmark  11:51

Yeah. Thank you so much.

Dr. Grace Wright  11:52

Thanks so much.

Steven Newmark  11:55

Well, Zoe, that was a great conversation I thought we had with Dr. Wright. And I know I certainly learned a bit about PMR. And hopefully we can educate some people about this disease.

Zoe Rothblatt  12:04

And I really liked her tips for patients to pay attention to about your pains and how you’re interacting in daily life. Really great stuff there.

Steven Newmark  12:12

Totally yeah, that definitely hit home. And the idea of compensating in other ways is, I guess, a little bit of a bandaid, if you will, but really got to address the underlying issue.

Zoe Rothblatt  12:21

And yeah, just by recognizing your symptoms is like a part of advocacy for yourself, and then you’re going to your doctor and tell you about is a really big step and just encourage everyone to advocate for themselves in that way.

Steven Newmark  12:33

Definitely. Well, we hope that you took something from this podcast as well. And before we go, we definitely want to encourage everyone to check out all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  12:45

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 and review on Apple podcasts and definitely hit that subscribe button wherever you listen. I’m Zoe Rothblatt

Steven Newmark  13:00

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

Narrator  13:06

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.

Steven Newmark  00:08

Welcome to The Health Advocates, a podcast that breaks down and 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  00:28

And today, we’re going to talk about open enrollment for health insurance. But as usual, we do have a few news updates first.

Steven Newmark  00:36

Well, it’s November, which means that insurance coverage is changing for COVID treatment.

Zoe Rothblatt  00:40

That’s right. So coverage of COVID treatments, including Paxlovid will transition to commercial plans, as opposed to through the government. It’s unclear how much patients will have to pay through copays right now, it’s going to be one of those wait and see, as it rolls out.

Steven Newmark  00:56

Right. There are still millions of free doses that have been procured by the federal government that are likely to be available across the country, in hospitals, doctors offices and pharmacies for a short period of time until those treatments run out.

Zoe Rothblatt  01:07

And let’s also not forget that those who are uninsured and those with Medicare or Medicaid coverage, we’ll still be able to get Paxlovid at no cost until the end of 2024.

Steven Newmark  01:18

Yeah, and there will also be patient support programs sponsored by the pharmaceutical manufacturers to help patients as well.

Zoe Rothblatt  01:24

That’s a really good point. And also just something to note is that, you know, when the new COVID vaccines began rolling out, there were some reports that insurers weren’t covering the shots. But it was really because they hadn’t uploaded their codes in time. Hopefully, we don’t see this with Paxlovid but I did hear about a few people in the community going, you know, shortly after it was approved and encountering that issue. So if you do have that issue, just call the insurance company and double check there.

Steven Newmark  01:49

Good to know, good to know. Yeah, I want to take a moment to just remind listeners that GHLF remains steadfast promoting accurate evidence based insights regarding vaccines and vaccine research. We’ve gathered all of our vaccine resources in one place, it’s at ghlf.org/vaccine-resources.

Zoe Rothblatt  02:07

And we also have the Informed Immunity podcast as part of this resource, which is really cool. It’s a new series that addresses the most pressing topics in vaccines, including, you know, debunking myths and advocating for public health. So I definitely recommend everyone to check these resources out. And you can find the links to both of our vaccine series and the page in the episode description.

Steven Newmark  02:30

Excellent. Yeah, what else is happening in the world?

Zoe Rothblatt  02:33

So another more vaccine news actually, the FDA approved a meningococcal vaccine. This basically combines two existing meningococcal vaccines into one shot. So it’s called Prenbaya, I think that’s how you pronounce it, and it’s the first vaccine that in you know, one vaccine, it protects against the five most common meningococcal bacteria groups.

Steven Newmark  02:56

That’s fantastic news. Really good to hear, it’s always good when more vaccines become available. So that’s great.

Zoe Rothblatt  03:03

Yeah, and just you know, a reminder, what is meningococcal? It’s rare, but it’s a bacterial infection that can affect the brain, spinal cord, and bloodstream. And what’s really dangerous about it is that it can progress from mild flu like symptoms to death in a matter of hours, and survivors are often left with long term disabilities. So, it’s a really important vaccine to have on the horizon to prevent such serious illness.

Steven Newmark  03:27

Great, great. Well, let’s talk about open enrollment, like we mentioned, it’s that time of year, and it’s an important time of year time to start looking into plans for 2024 and make decisions that will impact your health access issues.

Zoe Rothblatt  03:41

Yeah. So you know, let’s start with the basics. You mentioned open enrollment starts November 1, and this is for federal and state exchanges. Some of the states have like a little bit of different dates, so it’s good to just double check. But I guess you know, the earlier the better to ensure that you’re getting your coverage.

Steven Newmark  03:58

Yeah, most states it tends to run through January 15. But again, check your particular state, California, for example, goes until January 31. But Idaho ends on December 15. So something to keep in mind.

Zoe Rothblatt  04:11

And in most states in order to get coverage that kicks in on January 1 in the new year, you want to be enrolled by December 15. So just also think about when you need your coverage to start.

Steven Newmark  04:23

And so and how do you enroll, where do you go to enroll?

Zoe Rothblatt  04:25

There’s a one stop shop healthcare.gov. Most states I think about 32 operate on the federal marketplace, some states have their own, so, that’s I think 18 states and Washington D.C., but you can go to healthcare.gov and you can find that information out once you start inputting information and it will lead you to the state exchanges website if you need to go there. And there’s also a number on the site where you can call and talk to a broker and get some one on one help like that.

Steven Newmark  04:52

Excellent. And let’s talk a little bit about the importance of health coverage. You know, at its most basic, it helps pay for both foreseen care that we all need, as well as unforeseen care that we all need.

Zoe Rothblatt  05:04

Right. I mean, I’m someone that lives with two chronic diseases, I use my health insurance a lot. I’m hitting that deductible fairly quickly. And I’m so fortunate that I have a plan that helps cover my meds, covers my doctors. But on the flip side, there’s also preventative care that is really important, like we’re talking about getting vaccines and being really proactive about your health and insurance coverage really comes in handy there.

Steven Newmark  05:29

Right.

Zoe Rothblatt  05:29

You know, a yearly physical, all those things.

Steven Newmark  05:32

Yeah, you mentioned hitting your deductible early. I think that’s important, when trying to pick a plan, it can be quite confusing. Some plans, the monthly fees are high, but they may have a lower deductible. Some plans are the opposite, that fees may be lower, but they have a higher deductible. So it takes a while for that to kick in.

Zoe Rothblatt  05:50

Well, you know, let’s talk about that for a minute. So the monthly fees are called premiums. This is just like the basic rate you pay every month, kind of like paying rent for your apartment.

Zoe Rothblatt  06:00

The deductible is that amount you’re responsible for before the insurance totally kicks in.

Steven Newmark  06:00

Right.

Steven Newmark  06:06

Right.

Zoe Rothblatt  06:07

And then we have things like copay, which is a portion of the doctor visit, the medication, the service that you’re responsible for. And that’s a flat rate, and coinsurance is similar to a copay, but it’s a percentage of that. Those are just some like basic terms to keep in mind as you look at plans.

Steven Newmark  06:26

Right. So again, it behooves you to take the time to figure out what you expect your costs to be your foreseen costs, so to speak. If you have a chronic condition, it might be simpler to figure that out. And if you’re expected to have high medical costs, you have to weigh that in whether you want to get a plan with a low deductible and pay a higher monthly premium.

Zoe Rothblatt  06:46

And, let’s not forget how important it is to check for coverage for your providers, your local hospitals, the medications you take, even if you’re going to enroll in the same plan as last year, it’s really important to just double check that that the coverage is still there.

Steven Newmark  07:02

Totally. Yeah, that’s perhaps the most important thing actually is making sure that your medications and your doctors will be part of your plan for 2024. Yeah, so that’s important stuff. What do we expect the numbers to look like in 2024?

Zoe Rothblatt  07:14

So for last year, an estimated 16.3 million signed up during open enrollment, which is, you know, that’s a great number. We talked a lot about how people this year lost Medicaid coverage because of the change in eligibility from COVID. So many of these, you will now be eligible for marketplace plans. So we could probably expect that number to boost and hopefully they’ll enroll you know?

Steven Newmark  07:36

Yeah, yeah, I guess we’ll take a look at that and see what that looks like.

Zoe Rothblatt  07:39

Also interesting to note is that, you know, we always heard how 26 is the cutoff age to get off your parents plan.

Steven Newmark  07:46

Right.

Zoe Rothblatt  07:46

Apparently now, rather than lose coverage on your 26th birthday, you get coverage extended through the calendar year in which you turn 26.

Steven Newmark  07:55

I guess that’s good news. If you’re turning 26 Next year, and you’re on your parents plan. So this year, there’s gonna be about 100 plans to choose from, for 2024, which is down from about 114 that were available in 2023, according to CMS.

Zoe Rothblatt  08:09

Yeah, I think the goal here is like sometimes too much choice is really confusing. And it’s just more, you know, like whittling it down. But while they’re doing that, I think there’s a larger range of insurers they could choose from. So while it may seem like the plans are being reduced, there’s still more choices within the plans.

Steven Newmark  08:28

Right, right and let’s talk about the plans. The Affordable Care Act plans, the marketplace plans are still grouped into the color tiers, bronze, silver, gold and platinum. And that’s based largely on how much cost sharing they require bronze plans offer the lowest premiums, and it goes in ascending order all the way up to the platinum.

Zoe Rothblatt  08:45

And let’s also not forget that there’s a lot of subsidies given on a sliding scale based on income. So we know that subsidies were enhanced during the pandemic and the Inflation Reduction Act extended that. There’s actually an online calculator on healthcare.gov that can provide subsidy estimates along with the tax credit estimates. So you know, as you’re looking at these plans, plug into that calculator and see what makes most sense for you.

Steven Newmark  09:11

Yeah, excellent, excellent. Well, a lot to think about. It’s an important time when you’re choosing your plans. We should also say that if you’re getting an employer based plan, oftentimes there are decisions to be made with those plans as well. You may have different options. So this is what we were discussing about premiums and deductibles doesn’t just hold for marketplace plans, but also for the general employer plans as well.

Zoe Rothblatt  09:35

You know, just a little anecdote if you’re hearing all these words and feeling confused, you’re totally not alone. I remember when I was first diagnosed with my chronic illness, I was 20 and I got a bill and I called the doctor’s office and said, why do I have this bill? And the person said, you haven’t met your deductible and I was like, could you hang on for a second? I’m like whispering to my mom. Mom, what’s the deductible? I had no idea what was going on, and I was learning on the spot.

Steven Newmark  10:02

I know.

Zoe Rothblatt  10:02

And now years later I know what I’m talking about, but there was definitely a learning curve. So if you’re feeling that too, you’re not alone.

Steven Newmark  10:09

Totally you need like a mini PhD in healthcare or something to understand what’s going on.

Zoe Rothblatt  10:15

Yeah. And oftentimes, you know, like you’re diagnosed with your chronic disease, you’re trying to figure that out plus become a health insurance expert at the same time and it’s a lot at once.

Steven Newmark  10:24

Yeah, no, look, we all have different areas where we have more knowledge, those of us who have dealt with health care, perhaps have more knowledge in this space, which is good. And then we all have areas where we just don’t have as much knowledge, you know, frankly, when I need car repairs, I have no idea what the heck they’re talking about. That’s just how it goes. And I could try to become a little more learned in the subject. But it’s just not something I deal with on a regular basis. And as a result, I am far from an expert on that. But I do understand health care and health insurance.

Zoe Rothblatt  10:52

And there’s so many resources out there to help just as I mentioned before, you know, you can call up on the marketplace and have a broker help you walk through it. So even if your knowledge is limited, try not to be intimidated and reach out to those who can help you including our 50-State Network.

Steven Newmark  11:09

Absolutely. Absolutely.

Zoe Rothblatt  11:12

All right, Steven that brings us to the goals of our show. What did you learn today?

Steven Newmark  11:16

Oh, well, I learned about the new vaccine pentavalent vaccine that you had mentioned, it was just FDA approved. And that’s always good news as more vaccines become available to help stop the spread of diseases.

Zoe Rothblatt  11:26

And yeah, I was just reminded of the importance of health care coverage and you know the difference in the plans that the Marketplace offers.

Steven Newmark  11:35

Well, we hope that you’ll 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  11:43

And if you have any questions, comments, episode topics, 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 liked this episode, please give us a rating write a review on Apple podcasts and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  12:05

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

Narrator  12:10

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, 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

Today on The Health Advocates we’re joined by Nika Beamon. Nika has come on to talk about her journey with IgG4, you know, getting a diagnosis and how she’s advocated for herself.

Steven Newmark  00:39

All right, let’s get into it.

Zoe Rothblatt  00:41

So welcome, Nika. I’m excited to have you on The Health Advocates. Why don’t you start off by introducing yourself, telling us a little bit about you and your diagnosis,

Nika Beamon  00:50

It started somewhere back in college. So, I’m Nika Beeman and I’ve actually written extensively about my illness. But I didn’t start writing about it until about I would say about 10 or 11 years ago, it was a condition that I was aware that there was something wrong with me since college. So we’re talking about the late 90s, I was aware that I was not the same given the fact that I was an athlete and did all of those things and at the time, only weighed about 122-125 pounds. It was very strange to me that I was tired all the time running spontaneous fevers, having joint pain, something I didn’t have, unless obviously, I did too much in the weight room, I did not have that issue. And so in college, we started to realize my junior year in college that something wasn’t quite right. But of course, you go to the clinicians there, and they tell you, you have mono because everybody has mono or you have something common but all of those tests always came back negative. And so we sort of just decided, well, there’s something wrong, but maybe it’s not that major, just kind of blew it off. But as my 20s went along, I got sicker and sicker. And we’re like, this is strange, other things started going wrong and we’re like, okay, so we got the spontaneous fevers, now we’ve got the joint pain, now we’ve got other strange things happen. And we really need to figure that out. At some point, you know, again, over the years, I’ve had 37 procedures. I’ve had everything from I’ve had to do my stomach twice. I’ve had extensive gastro reflux disorder, I’ve had pancreatitis, at some point, I’ve had, you know, I’ve got non-alcoholic fatty liver disease and at some point, they thought my liver was struggling and having issues. So it’s been so many things. I’ve had pseudo tumors, just cysts that seem to appear random places, and chronic lymphadenopathy, where my lymph nodes had been swollen. You know, at one point, it was swollen for months at a time to the point where I actually ultimately had seven surgical lymph node biopsy and removals one year, and then had to repeat it the following year, because they suspected cancer. So it was one of those things where you know, and then in my 30s it got even more interesting, I had two strokes, which they couldn’t figure out. Two TIAs, two trans ischemic strokes, and they could not figure out why that was either. And all of a sudden, all of these things were just going wrong. And from the outside, it did not appear that that should be the case. I had no family history of any real illnesses and so it became really quite interesting to figure out. The one thing I did always have was the host of doctors thinks something was wrong, just not knowing what it was. My frustration was that generally they would test me for the same things over and over and over again. And most of them were just based on my appearance because just from the outside appeared to only be an African American female, that’s all they would test me for. You must have lupus, you must have sarcoidosis, you must have rheumatoid arthritis, you must have something that’s sickle cell anemia, you must have something that’s common for people who are African American. And even though I did not, they would just repeat those tests because they didn’t know what else to do. I think that again, what scared me straight and ultimately, what made me write the memoir that I wrote about my journey to find a diagnosis, it took me 17 years to do it, was that what I realized was that part of it was my fault. Because I did not really A. advocate for myself, and B. do the things that as a patient we’re not taught to do but you have to do, which is have all of your medical records. Because when they told me that I might die in my early 30s well that you know, it’s enough to make anybody sort of go like how did I get to this point? Like the lymph nodes were swollen all of this time, and I didn’t say hey, we got to do more tests or anything, because I assumed that they knew what they were talking about. What I also assumed at the time was that my doctors were talking to each other. We live in a different age now where there are patient portals, and so they can see and talk to each other. But back then they did not do that. And so I had test results and I was talking about other parts that were going wrong that they didn’t see. And so nobody was able to put all the pieces together simply because I never provided them with all the pieces. You would think it’d be something that somebody say what other doctors you’ve gone through. But again, when it comes to your health, I learned that I don’t expect anybody else to care more about it than I do. And so I learned to collect my records, drag my records everywhere. And for me, that’s all it took. I brought literally a collection of the records of my condition over the years, including the scans, the X-rays, and all of those things and the reports and I said, well, I’m gonna sit down and figure out who the best rheumatologist is. It seems like it’s autoimmune. A couple of people have said that, how do I figure this out? And I said, well, I’m a journalist, it’s easy. You go to figure out who’s the best, who can I talk to that’s the best in this field. And so that’s what I did. And I went to like the Castle 10 Guide and other guides of the best doctors and hospitals in the country. I just started making appointments. And on my third appointment, I saw a rheumatologist here in New York, Dr. Paula Rackoff, who at the time was in the top 10, for rheumatologist in the country. And I brought in my files and she said, okay, leave them and come back in a week. And I thought, oh, that’s the end and all I’m gonna hear from her. And sure enough, I come back in a week, and she writes down on a piece of paper, you have this, I think, and I thought, wait, what? Nobody’s ever said they thought that I had anything.

Zoe Rothblatt  05:35

Yeah, what was that moment like for you? When you were finally like, given a name for something?

Nika Beamon  05:41

First, it was relief. And then I looked at the paper was like, what the hell was that? I had no idea what IgG4-RD was, it meant nothing to me, it meant nothing to anybody that I told it to. They’re like, what is that? And so we started looking into what is that? And to my frustration, the first funny thing was A, that you realized that you could do a blood test to test all of your IgG enzymes one through four and it’s a simple blood test, somebody just has to know to run it. And the second thing was that I had left Boston, I had gone to Boston College, I had left Boston for New York when I was working and the biggest IgG4 center in the U.S. is in Massachusetts at Mass General Hospital. So it’s like I was down the road the whole damn time. So that was incredibly frustrating to realize that even with that center being there, either nobody knew what the condition was, they didn’t expect me to have it, or they didn’t know how to look for it. So that was incredibly astounding. I eventually did go to Mass General and met Dr. Stone and we talked about my case. But I ultimately have now for the last 20 plus years, still been with Dr. Rackoff here in New York City, because it’s easier for me. But you know, it was pretty much the same. And over the years, what I’ve learned is that drugs get better, and people get better, you get better at caring for yourself, and so sort of stuck with it. But I never told anybody. So I was working in TV since I got out of college since I was 20 years old. And I never thought that it was somebody else’s problem that this is the way I was built. And so I never told anyone. And then back in 2014, Rita Wilson, who is Tom Hanks’ wife, started a column at the Huffington Post and she asked for stories. She was asking for stories, almost like survival stories and she was asking for stories. And so my coworker and one of the only people who actually knew what was going on with me said you should write a story. I thought, There’s no way I tell other people story, don’t tell my own. But I decided to send the story anyway. And I sent the story. And I got a note back saying we’re going to run your story. And then there was panic, because I thought, u oh, I take medication every day. I’m sure my co workers probably think their vitamins. I do have a lot of doctor’s appointments, but they don’t know what they’re for and now they’re going to know, this is my life that this is who I am. And so I called my boss and I said, hey, look, I want you to know, I wrote this article for The Huffington Post, it’s coming out and before anybody stumbles across it, because that’s what they do here, I’d like to share it with the staff and so that’s what I did. And I found a whole bunch of people who spend the whole, you know, days investigating other people’s lives very shocked that they knew nothing about the person sitting next to them. And my co worker said, you see the shock and amazement here, it’s something you need to share with other people. And so I started for once writing something other than my blog more about me. And so I wrote my memoir, Misdiagnosed: The Search for Dr. House, and I called it the search for Dr. House because after I had my stomach redone… The second time I had to redo, I was at home and I was bored and my now husband says to me, did you ever watch the show about a master diagnostician a guy who can diagnose the rarest conditions? Wouldn’t it have been cool if you had that? And I was like, oh, my God, it would be cool, but I never heard of the show and so I started watching the show and I was like, how come there are not more doctors and every hospital doesn’t have a department like this? And so that’s how it ended up in the title of my book and I tell people how I went through the process of trying to figure out what was wrong with me and then figuring out you know, what you need to do in order to save your life and in the back, I decided to give people some tips about how to save themselves, because I thought that was important.

Zoe Rothblatt  08:59

And can you share some of those tips with us? Again, looking back, what are some of the telltale signs of IgG4-RD that you think people should know? And how can somebody else avoid these like 17 grueling years that it took you to get a diagnosis?

Nika Beamon  09:14

What I’ve learned over the years is that autoimmune diseases are the hardest to diagnose, because the symptoms mimic so many things. And so that’s so difficult, because just saying you’re tired, because most people just say I’m tired. You don’t say like I feel like I’ve run a marathon and I’m standing still. We’re not used to being A, that dramatic when you go to the doctor and B, sharing that much. A doctor for most people is a stranger, somebody you see once or twice, maybe twice a year, unless something else goes wrong. And so it’s not something that we’re all taught or familiar with. You’re also never taught to be a good patient. And somebody said to me once what does that mean? I said being a good patient also means that you do your homework meaning you make sure that the doctor is appropriate for what’s going on with you, that you have a doctor who’s actually listening to you. The doctor can’t listen to you while you’re there, then make sure they have a way to reach them outside of office hours in case something else pops up or something else you remember. We don’t remember to keep a diary of the symptoms, like when did the pain start and you go, I don’t know, because you don’t know. So you got to write it down. When the pain starts, write it down, you got to write down your symptoms, because you’ll forget one. If you can’t feel comfortable talking to your doctor, then bring someone with you. Have your records, you know, if you don’t want to carry them with you that join patient portals. It’s important for two reasons. Not only can your other doctor see the information, but you can also see them yourself. So you can look at test results and see when they’re out of range, you can look up what those test results are telling. And one of the other important things and one of the things that I faulted myself for is when you know something’s wrong, your gut tells you something is wrong, no one knows you better than you.

Zoe Rothblatt  10:39

That’s so true.

Nika Beamon  10:40

So when your gut tells you something is wrong, don’t give up until you get at least an answer as to what that is. Lik in my case, in a lot of cases, with autoimmune diseases, there is no solution, meaning there is no end in sight, necessarily, because there is no cure for most of them. But what you can do is get better treatments, it’s also part of your job, once you find out what you have, is to keep up with what the treatments are. And also pay attention to the side effects of the treatments that you’re getting. I spoke once at the Autoimmune Disease Association’s conference in Detroit and a young woman had a very similar condition to mine and she was also taking a drug called Plaquenil, which a lot of people heard about during the pandemic, we take it for other reasons. And it can cause retinal detachment and one of the things they tell you, when you first start it is make sure you go see an ophthalmologist to check out your eyes, not just a regular old eye doctor, but make sure you check out the retina to make sure it doesn’t detatch because it can do so. And she said she started feeling pain in her eyes but she never went to check it out. Because the drug itself made the rest of her body feel better, so she just blew it off. Well, now she’s going blind, because retinal detachment is something that will make you go blind. And I thought, why would she sit there and ignore the fact that it’s affecting your vision, because we do sometimes because your doctor said take this and you don’t want to cause either problems or make waves or it’s making you feel better in another way that you ignore other symptoms that can be causing problems. So it’s always again, important to update your doctors when you have a reaction. I know for me with my stomach and stuff like that over the years, I found that I was taking a drug called Reglan because it improved the ability for me to swallow. And it gave me facial tics and facial seizures and so I don’t take that drug anymore. So you can’t be afraid to tell them what’s really going on with you. And I also tell people, if you have any level of pain, please don’t look at that happy face chart and ever hit zero because what it does is, it sort of makes them disregard your pain. We all want to be brave, we all want to be these heroes, be like I can take it. You don’t have to take it the world is not necessarily designed for you to just take it. You do need to let them know that you’re in pain so if always, never just pick the perfectly happy face on the chart. And you also can’t forget to ask for help financially, these diseases are debilitating for most people. And so you can’t forget to explain to your doctor if they give you a pill when it’s very expensive, to say, does this come as a generic, is it okay, if I take them? Do you have any samples? How about do you have any samples? These things are important, sign up for the discount cards to get your medication, you don’t want to skip it simply because you can’t afford it, you just got to find another way around it.

Zoe Rothblatt  13:01

It’s so true. A lot of what I’m hearing you’re saying is just how having a chronic illness is a full time job and really requires a lot of advocacy, but also a lot of dedication to you know, learning about what’s out there, whether it’s what you were just saying about financial means to help you. A lot of people don’t know about that until you become like a seasonedly chronic ill person and learn from others in the community or just asking the right questions can be so hard. You’re talking about how you freeze up at the doctor’s office sometimes, it’s just challenging to find the right words and often you feel like you’re playing catch up. And I just so appreciate how simply you’ve outlined all these suggestions for how people can advocate for themselves in the doctor’s office and all around in their care. I wanted to ask how you’re doing today and how has like IgG4 affected your quality of life? We’re doing this in the middle of your work day and you obviously have a busy career. And I just wanted to know like how you keep up, like what’s happened since that article went live?

Nika Beamon  14:00

The interesting part is that again, I always considered a part of me but it’s not everything about who I am. Certainly that shifted a little bit during the pandemic because what I learned is especially now on the other what people consider the other side, although technically, it was never, it’s an endemic, it’s not really over and it never will be because it’ll be a seasonal thing. But for everybody else the world goes back to the same. For those of us who are semi-immunocompromised and are already battling illnesses, it’s something that just one more thing we have to live with. It’s something that people don’t understand. They just assume that it just goes away and you’re good and it’s not that big a deal. But for me like when I had COVID I was sick for 33 days. I required a steroid nasal spray every prescription cough medicine, I required a lot of things that everybody else did not. My husband got it at the same time, he went back to work and five days, I was still at home not able to get out of bed for almost 10. So I already have joint pain. I didn’t need additional joint pain, like that’s annoying.

Zoe Rothblatt  14:52

You’re like, I’ll pass, thanks.

Nika Beamon  14:53

So yeah, like this was you know, and so when you try to explain that to people for them, it’s just like, oh, it was no more than a cold. For you, you know for me a cold becomes an ammonia for you a cold, it’s just a cold. I mean, the interesting thing about getting older is A, you get older, so things break down normally, when you have an autoimmune disease, they break down more. So the regular aches and pains that you get as you get older, for me are a little exacerbated because they’re happening faster and easier no matter how much I work out, no matter how much I do, my joints are still wearing away because that’s what autoimmune diseases do, they usually attack your joints and your organs. And so the inflammation attacks my joints, and it pushes out all the fluid in my knees. So I need to fill those with synvisc, I call it the Tin Man Syndrome, I’m always feeling something I’m shooting my hands with steroids or shooting my knees with Synvisc or shooting steroids in my feet to get rid of all the joint pain there or burning the nerves in my back so I don’t have spinal pain because I have inflammation in my spine. It is a full time job. It’s making sure your medication is refilled. I’m like I’m on 30 days, I gotta go back to Rite Aid. It’s making sure you do those, it’s making sure that you’ve got every kind of ologists that exists. I’ve got every ologists that you can think of a neurologist, you name it a rheumatologist, every kind of ologists that most people have never heard of. But I also tell my coworkers I’m like, I’m probably more scan than the rest of you, I might outlive you all who knows, because they’re always looking and they’re always checking. And I’m always checking to make sure that I can have the best quality of life that I can, so I do spend the money to fill my joints, I do spend the money to check all these things, because I want to live the best life that I can the way that I am. And so that’s all you can do. But it is harder with my job not just because that I have a condition. But you know, as you get older, you just don’t want to I don’t want to travel out in the snowstorms. But I certainly don’t want to do it with an autoimmune condition because I don’t want to risk injuring myself more than I’m already injured, it already causes enough damage, I don’t want to add to it. And you know, my coworkers are fine, they’re perfectly nice people, but I don’t want to be around them if you’re coming to work when you’re still sick, because you don’t realize how inconsiderate and how dangerous that is to me. I didn’t mind sitting in an open newsroom pit until I realized that sitting in open newsroom pit put me in danger of all of the germs that they’re carrying and now I got to worry about COVID too, these are things that are going to be a constant concern as you get older, but life is doable, it becomes something you get used to it becomes something that you know, like said you realize that whether you’re sick or not some of these things, you should be paying attention to any way but you don’t give up on your quality of life just because this is the hand you were dealt, you just play it. And I try to still play it I still try to write outside of work. I try to blog. Sometimes I have bad days, I blog about the bad days, I blog about the good days, because you don’t want people to think that you don’t have bad days. My parents, both of them recently died in the last three years. And for me it was a scary prospect, not just because I don’t have parents, I didn’t expect that at 50, but it was also because my parents were our main caregivers. They were the ones who knew exactly what to do, removed all the bandages over the years and done all of those things. And this is what she likes to eat when she’s sick. And this is what she can swallow when she’s got throat inflammation. And so to hoist all of that on my husband was something that I dreaded. I was like, at what point is he going to resent that this is how I am. So there’s so many things that do alter your life. But at the end of the day, you got one life, so you got to live it and so I just choose to live it regardless of the fact that this is how it’s built.

Zoe Rothblatt  18:00

Yeah, thank you so much for being so vulnerable and and sharing all that. I’m sorry for the loss of your parents and also congratulations on your wedding. I just appreciate that you’re highlighting how having an autoimmune condition really does impact every aspect of your life. And there’s a lot to consider both in and outside of the doctor’s office. Before we go, I wanted to just ask you, what’s one thing that you want people to know about IgG4-RD? It’s not such a common disease, you mentioned you hadn’t heard about it when you were diagnosed. Can you share just like one important thing about it for our listeners?

Nika Beamon  18:34

I mean, I think they mentioned rare diseases and to every person, every disease is rare because every disease manifests in a person differently. So I can’t tell you that if you’re diagnosed with IgG4-RD, that you’ll turn out just like me or that you’ll you know or that you won’t I don’t know the answer to that. What I do know is that it is perfectly livable. It’s a part of me, it’s not everything that I am, I insist on living the best life that I can with the people that I can. So surround yourself with people who don’t see you justice as a disease, who see you as a person, who are willing to help not enable because you don’t need to be enabled. You just need help. And it’s okay to ask for help. Because anybody can need help anytime. But certainly you’re going to need it more battling a disease. So advocate for yourself, surround yourself with a good village so you have the help that you need. And never forget, it’s just a part of you, the rest of your life is whatever you choose to make it.

Zoe Rothblatt  19:30

Thank you so much. I’m actually a patient myself, I live with Crohn’s and spondyloarthritis and I just like so appreciate the hopeful message and what you’re saying. I think a lot of times we can get a bit down in the dumps about our disease and sort of vent a lot with each other which has its place it’s so important to complain but it’s like a breath of fresh air hearing what you’re saying. So thank you so much.

Nika Beamon  19:55

Thank you, no thank you for sharing as well.

Zoe Rothblatt  19:58

That brings us to the close of our show. What did you learn today, Steven?

Steven Newmark  20:02

Yeah, my big learning is just on a more global scale. As advocates, we really have to shorten the time to diagnosis, so it’s so important.

Zoe Rothblatt  20:10

Definitely. I really learned from her more about how you have to be prepared and advocate for yourself and really keep a hold of all your documents and timeline of everything in order to show up prepared to appointments.

Steven Newmark  20:25

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  20:34

And if you have any questions, comments, episode topics, 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 liked this episode, please give us a rating, write a review on Apple podcasts and definitely hit that subscribe button. I’m Zoe Rothblatt.

Steven Newmark  20:56

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

Narrator  21:01

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.

Steven Newmark  00:08

Welcome to The Health Advocates, a podcast that breaks down and 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’re going to talk about the 2023 Nobel Prize winners, but first, we do have a few news updates.

Steven Newmark  00:34

All right, let’s get into it.

Zoe Rothblatt  00:36

Okay, well, first on the docket, we have another authorized COVID shot, which is Novavax. We’ve been waiting for that. So the FDA approved Novavax for people ages 12 and older, it’s targeted towards the most recent Omicron subvariant similar to the mRNA vaccines, and it’s now available to anyone in that age group. So 12 and older as long as it’s been at least two months since they had a previous COVID vaccine.

Steven Newmark  01:02

Great. Always good to have more tools in the arsenal, right?

Zoe Rothblatt  01:05

Yeah, definitely is great to have another option. mRNA is more recent, and some people prefer the older technology. So it’s nice to have options for those who would like it.

Steven Newmark  01:15

Excellent, excellent. In other news and a very big win for patients and for GHLF who participated in this particular lawsuit. A federal court has struck down a Trump administration federal rule that allowed health insurers to not count drug manufacturer copay assistance towards the beneficiaries out of pocket costs. The ruling is particularly important for patients who depend on copay assistance and whose insurers implemented copay accumulator policies by using accumulators, health insurance, pocket copay assistance patients receive rather than allowing it to assist patients and paying for the necessary medication.

Zoe Rothblatt  01:48

Yeah, this is exciting, big win for patients.

Steven Newmark  01:51

Absolutely.

Zoe Rothblatt  01:52

I know, we were really active in this along with I think almost like 30 patient groups. So it’s nice when we all come together and are able to see changes.

Steven Newmark  02:00

Definitely this is a really big deal. And essentially, the Court recognized the rules essentially was unlawful insurers are not going to have to abide by a federal rule that governed previously and under that rule, copay accumulators are permissible only for branded drugs, but generic equivalent if it’s allowed under state law. So this is definitely a benefit to patients, this is very good news.

Zoe Rothblatt  02:21

And this should take effect right away, right?

Steven Newmark  02:23

Yes, immediately. If something is illegal, there’s no like, oh, you can keep doing illegal activity for a few more weeks. This is it, it’s over.

Zoe Rothblatt  02:31

So what does this mean for like the HELP Copays Act and all the state advocacy that we’ve been doing?

Steven Newmark  02:38

That’s a good question. Those are obviously different branches of government. But if anything, it’ll probably help bring more pressure to bear on legislators to pass these bills, it’ll probably have the indirect impact, if you will, of just, you know, strengthening our cause being more excitable about our cause, if you will, and showing lawmakers that even courts have ruled in favor of what we’re seeking. So I think on the whole, it will be helpful for sure.

Zoe Rothblatt  03:06

That’s great, nice win for patients. Were we expecting that or did this kind of come out of nowhere?

Steven Newmark  03:12

Yeah, we expected it. So I don’t want to say I’m surprised. Yeah, I would say I’m happy. But I’m not going to say I’m pleasantly surprised. You know, I was confident.

Zoe Rothblatt  03:20

That’s awesome. Yeah, because we posted on social media, we got a lot of great responses from patients saying thanks so much for the advocacy. And there was like a lot of excitement around this happening. So yeah, it’s great to share the news with the patient community.

Steven Newmark  03:33

Yeah, of course. Excellent. I’m glad to hear that. Well, in other legal news, we’re in October, which means that the United States Supreme Court is back and slated the arguments this very week on health care matters. There’s one case in particular that’s getting a lot of attention regarding disability rights case, and the case is called Acheson Hotels versus Laufer and the justices are going to consider whether a self appointed civil rights quote unquote, tester, I’ll explain what that means in a second has the legal right to bring a lawsuit under the Americans with Disabilities Act. So essentially, the plaintiff in this case, I won’t get into it is no longer the plaintiff, but that’s a whole other thing. But the plaintiff in this case has physical disabilities and she filed a federal lawsuit in a federal court in Maine alleging that the website for an inn violated the ADA because it did not contain information about the inn’s accommodations for people with disabilities. So essentially, the question for the court is can you bring a case under federal law, in this case, the Americans with Disabilities Act simply because the information about accommodations for people with disabilities was not listed on a website and that’s why she’s considered a quote unquote, tester. She never actually went to the inn itself to see whether they were compliant with the Disabilities Act. The lower court dismissed the lawsuit holding that the plaintiff did not have a legal right to sue she did not have what’s known as standing because she had no plans to visit the hotel. She was just as I use the term a tester and therefore she was not injured by the lack of information on the website, a federal appeals court reinstated the lawsuit. And now it’s headed to the Supreme Court. So we’ll see what happens.

Zoe Rothblatt  05:07

This is interesting. So is there I guess you didn’t want to get into, I was gonna say who are the plaintiff snow? Is there a group of people that are saying, hey, I agree with this person? Like…

Steven Newmark  05:16

Yeah, you know, I’m going to embarrass myself a little bit by saying I’m not entirely certain who the litigants are on the plaintiff side, at least the defense is clearly who they are. Interestingly, most, the Department of Justice has taken mostly neutral stance, not taking one side or the other, you know, because it is kind of a tricky area, and a slippery slope that goes well beyond the Americans with Disabilities Act, the idea of standing is something that’s long held in American jurisprudence. So you don’t want to just give up that precedent, so to speak, but we’ll see what happens. She wasn’t the best plaintiff in the sense that she has filed, I think, literally hundreds of cases around the country, various cases under various laws, civil litigation cases to try and obtain money. It’s almost as if she was professional plaintiff, so to speak. So but we’ll say, but we’ll see whether it holds certainly just in terms of outside of the law, it makes sense, the idea of if you need a place with accommodations, and you go on a website, and it doesn’t explain to you that there are accommodations, then that’s troubling, right?

Zoe Rothblatt  06:19

Yeah, I was about to say the same thing. Like in hearing this, the message to me is like to be upfront about your accommodations, whether you have them or don’t.

Steven Newmark  06:28

Right.

Zoe Rothblatt  06:28

Especially because sometimes, you know, it’s not so easy to pick up the phone and call like, people don’t have that capability sometimes. So it’s just a good reminder to take a look at your resources, your establishments and see what information you’re putting out and try and make it as robust as possible.

Steven Newmark  06:46

Right, right. So it’ll be interesting, quote, unquote, to test whether a law is actually be followed, you know, some parallel to this is our civil rights advocates, who in the 1960s, would intentionally rode segregated buses in the 50s and 60s to spark litigation or try to rent apartments they didn’t intend to occupy to test whether they will be turned away because of race. So those cases were brought forward. So…

Zoe Rothblatt  07:10

And then are there other topics that the Supreme Court is slated to look at this month?

Steven Newmark  07:14

There are always topics related to healthcare. I think that the one of interest is that just this past summer, the Justice Department asked the Supreme Court to take up the mifepristone battle after a lower court partially upheld access limits that override the FDA’s authority. So the Justice Department is seeking to, shall I say, and redeem the FDA’s authority. The court has not yet agreed to take it up. But we shall see what happens.

Zoe Rothblatt  07:37

Yeah, I got kind of confused where this was left. Because, you know, as someone that doesn’t really know a lot about the court system, it has a lot of players involved here. So it’s just interesting to hear this update and see what news we’ll get this month.

Steven Newmark  07:49

Yeah. Yeah. I mean, I actually think that ADA case that we were just talking about is quite interesting, because I think it goes beyond you could be a layperson and sort of understand the facts of that case. It’s not very complicated. You want hotels to comply, and you have someone that was looking into hotels, even though she had no desire to actually stay at the hotel. And the question is, is that a way to go about enforcing the law? Yes or no, but we’ll have to see how the Supreme Court rules on that. Moving on our top story of the week, 2023 Nobel Prize winners for Physiology or Medicine went to the Hungarian American Katalin Kariko and American Drew Weissman for their work on mRNA vaccines. They were cited for, quote, contributing to the unprecedented rate of vaccine development during one of the greatest threats to human health.

Zoe Rothblatt  08:35

Really cool. We’ve been talking about how awesome this mRNA technology is, and the potential to move even past vaccines and into treatments, especially for things like cancer care.

Steven Newmark  08:45

Yeah.

Zoe Rothblatt  08:45

So it’s great to see it recognized at such a high level, I think we can, you know, walk through the problem, how they looked at mRNA and leveraged it for the pandemic, right.

Steven Newmark  08:56

Yeah, absolutely. You know, I don’t think we need to give the history of a Nobel Prize, but it’s a pretty big deal. And the fact that it’s being recognized for folks who contributed to our, a public health issue that involves literally every person on Earth is pretty exciting, to say the least. But let’s walk through how we got here.

Zoe Rothblatt  09:13

Yeah, so you know, going back how did we discover RNA in 1961, we saw RNA as a string of letters that gives ourselves instructions on how to function.

Steven Newmark  09:24

Yep.

Zoe Rothblatt  09:24

You know, we’re not scientists here. We know our basics from Bio 101. So bear with us as we go through this.

Steven Newmark  09:32

Yeah, I didn’t get that far. But I took High School bio.

Zoe Rothblatt  09:35

So you know at first scientist explored how synthetic messenger RNA so mRNA.

Steven Newmark  09:41

Right.

Zoe Rothblatt  09:41

Could be leveraged in gene therapy. And this was attractive because it meant we didn’t actually have to change our DNA, there would be no risk of accidentally introducing mutations that could affect how healthy genes work or worst case cause cancer.

Steven Newmark  09:55

Yep.

Zoe Rothblatt  09:55

But then every time mRNA was introduced into our cells for gene replacement, it caused a profound immune response. So in other words, our immune system was doing its job it was recognizing a foreign agent and trying to get rid of it.

Steven Newmark  10:09

Right? That’s huge. So there’s something coming into your system, you recognize it and are trying to get rid of it. So this cause scientists to pivot as there’s an obvious application for a situation where you want an immune response, namely, a vaccination.

Zoe Rothblatt  10:21

Yeah. So in 1993, an mRNA influenza test showed successful induction of anti influenza T cells in mice, this was really exciting in the science world, but there was still a major challenge, right, so that mRNA vaccines activated the immune system too early. And it resulted in like a kind of mediocre antibody response and diverted T cells from a pathway that supported antibody production.

Steven Newmark  10:49

Right. So here’s where I guess things get interesting. So traditional vaccines require you grow viruses or pieces of virus, and you implant them into the vaccine into the body, and your body learns how to essentially fight off the virus with mRNA. The approach starts with a snippet of genetic code, which carries the instructions for making the protein. So if you pick the right virus protein to target, the body sort of turns itself into a mini vaccine factory to fight off infection.

Zoe Rothblatt  11:16

And you know, where do our Nobel Prize winners come into this process here.

Steven Newmark  11:21

So at some point along the way, most of the scientific community sort of gave up on the idea of mRNA, and its application for vaccines. But Kariko, along with her colleague, Weissman were convinced that they could fashion a vaccine from mRNA. So they essentially kept at it and in 2005, they were able to come up with a bunch of RNA letter changes or modifications to the mRNA, at which they were able to publish in the publication Immunity, which is one of the top journal fields in immunology.

Zoe Rothblatt  11:50

And I guess, you know, in that time, when they were looking at this, there wasn’t such a big push, because then COVID came along, and like really amplified the need for vaccines. And I guess that kind of, you know, you put the fire under them to say, maybe we can really get this mRNA research going.

Steven Newmark  12:08

Right, right. So mRNA vaccines were already being tested for disease like Zika, flu, rabies, but the pandemic really accelerated this approach. So you know, it basically they came together to say, alright, this is it, we’ve got to figure this out in a very short and rapid response time. And it was interesting, I read what the Nobel Prize committee put out, and it wasn’t just that they were awarding them for the creation of the vaccine. And I’m gonna repeat what I said earlier, to the unprecedented rate of the vaccine development. So they were really giving them the award based on the speed in which they worked under very difficult circumstances, I can imagine while a global pandemic is raging.

Zoe Rothblatt  12:46

Definitely, I mean, it’s interesting to know that for decades they were looking into this technology and testing it out in other disease areas, and that there was early phase clinical trials for other mRNA vaccines, but that when you get a huge public health threat, it can really…

Steven Newmark  13:05

Totally.

Zoe Rothblatt  13:06

It can really amplify the need for something like this. And it just makes me think how our job is advocates is really important to make noise around issues, because when you make noise about issues and how it’s affecting people, it helps progress research and research leads us into these better therapies.

Steven Newmark  13:24

Yeah, I think ultimately, what it comes down to is you want to encourage research at all times, and you have to keep the underlying research going at some particular rate doesn’t have to be at the rate as if there’s a pandemic going on. But then when an emergency happens, you have the ability to then pick up that research and accelerate it. Whereas if we had sort of walked away from mRNA, 20 years ago, we may not have had that opportunity.

Steven Newmark  13:24

Right, it’s never backed down, you know, go for what you believe in and keep studying it.

Steven Newmark  13:37

Yeah. So, you know, it’s not an understatement to say that their discovery totally transformed our approach to vaccines, you would have a hard time naming a virus and public health importance for which an mRNA vaccine isn’t being attempted, which is fantastic. So I think it’s great to say that the mRNA vaccine, COVID-19 vaccine, is Nobel Prize worthy and an excellent example of our gains from decades long road of scientific discovery.

Zoe Rothblatt  14:15

It’s definitely well deserved. It’s exciting to see the recognition for something like this, especially there’s no denying there’s a lot of misinformation and disinformation out there about the vaccine. So it’s really nice to see the recognition here.

Steven Newmark  14:28

Totally, totally. So they get a cash award of 11 million Swedish kronor, which is about a 1 million American dollars. Very nice. But even more than that, they have the satisfaction of knowing that their work has saved millions of lives already and will continue to save millions more in the decades to come.

Zoe Rothblatt  14:44

Well, yeah. Here’s our congratulations and thank you for all your research.

Steven Newmark  14:49

Definitely, definitely.

Zoe Rothblatt  14:52

That brings us to the close of our show. What did you learn today, Steven?

Steven Newmark  14:55

Well, I learned, we were just talking about the mRNA vaccine but we also have a new updated non-mRNA vaccine available Novavax. So that is now available for folks twelve and up.

Zoe Rothblatt  15:04

And I learned from you a little bit more about the concept of a tester and how that works in litigation.

Steven Newmark  15:13

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  15:21

And if you have any questions, comments, episode topics, 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 liked this episode, please give us a rating write a review on Apple podcasts and definitely hit that subscribe button. I’m Zoe Rothblatt.

Steven Newmark  15:43

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

Narrator  15:49

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 and 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

Today, we’re joined by Julie Baak, an expert in rheumatologists practice management. Julie’s done a lot of advocacy around drug access issues to improve patient access to care. And we’re really excited to learn more about her work and advocacy today. So welcome, Julie.

Julie Baak  00:42

Thank you guys. Happy to be here.

Steven Newmark  00:44

Yeah, welcome. Why don’t you start by introducing yourself and tell us a little bit about what you do? What exactly is rheumatology practice management?

Julie Baak  00:52

So I run a rheumatology office on the business side on the practice management side. So we all know rheumatology is you know, arthritis, there’s 100 different kinds of arthritis, we do lupus, autoimmune issues, anything weird rheumatology gets. So I have one rheumatologist in my office, I have four mid levels, so three nurse practitioners, one physician assistant, and a staff of 25 that support that one MD. That is because we are a nimble organization and we just want to help as many people as possible. We’ve had to come to with all these administrative people because of the burdens of the insurance companies at the pharmacy benefit managers. But essentially, we are stamping out disease and saving lives in Bridgeton, Missouri, we see new rheumatology patients in one to three days by physician referral, which is sort of unheard of in the industry. But we are looking to manage and help patients deal with their chronic diseases. We’re not curing I think, just managing them and making them able to live their best lives.

Steven Newmark  01:48

Wow, that’s quite a staff size before management. And you touched on some of those issues but can you tell us a little bit more about why you require such a sizable staff to deal with it? What are the issues that you guys are dealing with?

Julie Baak  02:01

Sure. So in rheumatology, there’s a giant target on our backs because of the expensive drugs we prescribe. So there’s IV drugs, that we have an infusion suite, there’s oral drugs, which we call PO drugs. And then there’s self injectable drugs, which the patients do at home. So all of these drugs are very expensive drugs. Now, because of that, all the insurance companies want to, you know, use utilization management, and they have these formularies that are constructed based on how much rebates they get from the manufacturers, and they set up these formularies and they change every year. Sometimes they change over the quarter, but most of the time, they change every year. And what they do is, what I call it as the pay to play list, right. So if a pharmacy company pays enough money, they’ll put a drug in position one, two, and three, well, that doesn’t work for a rheumatology patient, because once we find a drug that works for them, they stay on that until it doesn’t work for them. So that’s what happens is that’s called a non-medical switch. So it is detrimental to everyone, the patient, the physician, the employer, everyone, the system to move patients on and off drug for profit. So what we do is we have to argue every one of those and we advocate one patient at a time we do not do non-medical switches, we do not change patients off the drugs. And if patients change insurance, we can still get that stuff overwritten. But it’s a whole other host set of problems because now you have a different insurance company that has a different formulary construction. So the non-medical switches is a huge issue that that’s what I need a huge staff to manage. We have to prior authorize everything, we frequently advocate to our patients to just cash pay your maintenance medicine and a local pharmacy if you can even find an independent one left that’s not been put out of business by the PBMs. But even my staff we cash pay our maintenance medicine at a local pharmacy, because it’s cheaper than going through your insurance. I mean, insurance is really turned into a scam. So because of those administrative burdens. That’s why we have to have such a large staff.

Steven Newmark  04:02

You know, you mentioned to changes year to year with the formularies. How do you keep up?

Julie Baak  04:06

Well, I keep up because I have this giant staff that helps me keep up. I have an infusion staff. I have about 10 specialists in the background that work just on the infusion side and I use a partner on that. So they’re not even on my staff. They’re just part of, and they’re not included in my 25. I’m talking about 25 belly buttons on the ground in my office. Okay, but I have 4400 square foot office, I have nine exam rooms, I have two ultrasound suites. We are literally serving the working class people and if we can get them in, get them an office visit, they can get their infusion, they might need an injection, we do it all in one day because my patients don’t have another $50 copay. These are the working folks and we want to keep them working. So we just serve them and get them done and get on with their lives.

Zoe Rothblatt  04:52

Can you talk to us a little bit about when these issues like non-medical switching or prior authorization delays come up how you communicate that with patients? I know often like it can seem like so much health insurance terms and gets confusing. How do you break this down to the patient explain what’s going on?

Julie Baak  05:09

Sure. So, on those office side with the subcutaneous drugs, I have seven back office medical systems that are on the ground in my Bridgeton office that do nothing but prior authorizations on the office side. So they’re really quite experts at getting this stuff done. The rheumatology patients are pretty savvy because this isn’t their first rodeo. Okay, and we see 25 new patients a week and there is such a volume of patients, they’ve been bounced around to different rheumatologists, they’ve gone to different doctors, they have got fibromyalgia written in their chart, therefore no one will accept them as a patient. Like there’s so many things to communicate to patients about. We have a website, we use all social media, we frequently engage with patients, one on one, any difficult case lands on my desk, and I will personally work on it and I get the patient on the phone, the very first thing I do is get the patient on the phone and say do you want me to advocate for access to care on a non-medical switch for you? Because if I don’t have the patient standing shoulder to shoulder with me, I’m not going to waste my time.

Steven Newmark  06:11

You may not be able to answer this, but how common is it for practices to do what your practice does? In other words, how common is it to have the good fortune to be a patient if I may say that, that goes to an office with such dedicated folks such as yourself?

Julie Baak  06:25

Well, there’s lots of good rheumatology offices, but the independent ones are obviously dwindling, because of just the whole economics of it all. I have two full time people on my advocacy team, myself and my assistant, Claudia Holley, and we’re a little bit different because I’m married to a physician. Okay, so he and I have been married for 33 years, we’ve only worked together in this business for eight years and we started this business, but we don’t cross swords. So I can like completely go soup to nuts with my advocacy and he stays on the clinical side. But we also have put a lot of resources and money into staff, you know, I’m pushing the envelope here, I am not for everyone. There’s a lot of practices that are not willing to use Twitter and with redacted cases, I know that if we’re on the right side of things, then I’m going to throw down and I won’t give up and writing the letters once you’ve done a couple of them. And I’ve actually spoke nationally on this process. I was just down in New Orleans two weeks ago, speaking at the National Healthcare Advocacy Conference, there’s a huge need for staff to learn these techniques but it takes a lot. You know, it takes what it takes. If I’m on the right side of things. I’m going to take it to the mat and I’m going to advocate for access to patient care. So an answer to your questions committee staff people have a Julie Baak, I’d say a handful of them, but we need more and people are afraid.

Steven Newmark  07:46

Yeah. And I guess my natural follow up would be do you have any advice for patients that may not necessarily have a Julie Baak at their local practice?

Julie Baak  07:55

Well, there’s lots of resources. There’s CreakyJoints, there’s Arthritis Foundation, there’s Coalition of State Rheumatology Organization. There’s a lot of areas that you can get help as a practice manager. In fact, on the CSRO website, the Coalition of State Rheumatology Organization, I sit on their payer response committee, there’s an opportunity to upload for practice managers to redact and upload their entire case up there. And we will look at that case, there’s about 15 really smart people, me included, that are looking at those cases, and we will write back and say, here’s what you need to do 1, 2, 3, 4. And sometimes, if it’s compelling, the CSRO will write a letter to the employer. That actually one of my patients one of Dr. Baak’s patients in 2021 was an Edward Jones patient, and they were all mandated the entire Edward Jones company was mandated to white bag infusion drug, that’s another disaster. And I actually with the advocacy and the sealing the deal was the CSRO president, Dr. Madeline Feldman’s letter saying, hey, this is not right. And you can see those letters on the CSRO website. So there’s education out there, we just need to get the word out. Because there’s no cost to do any of this stuff. This is a group of people that work on these committees, myself included, because we want to help, and we want to have education and advocacy for access to care.

Zoe Rothblatt  09:13

A common theme I’m seeing and hearing from you is working together as a community in this committee, working together with the patient, working together with the doctor, you know, with your other staff. And I just think it’s remarkable, like how many people it takes to get the patient the care that they need. And I’m just remarking on how much time is wasted and used to fight these insurance companies where it can just go to seeing more patients. And it’s great to know that there’s people like you out there doing this work, but it’s also so frustrating, especially as a patient myself to hear about all of the resources that need to go into getting patients the right care.

Julie Baak  09:49

I mean, it is it just it takes what it takes, but everybody is a patient, okay. And everyone has a story to tell. And if your physician writes a prescription, that should be his prior authorization, all this other nonsense, or delays and denials and for profit for the PBMs and the insurance companies. You know, the right medicine for the right patient is really the driving focus of our practice. And I don’t have a magic wand. I advocate one patient at a time, and I’m pretty successful at it.

Steven Newmark  10:21

Well, it’s amazing what you do for patients. And we’re so appreciative for all that you do for the hard work that you put in to help patients. And thank you for coming on today and telling your story as we help spread the word and help patients ourselves around the country.

Zoe Rothblatt  10:35

Yes. Thank you so much, Julie.

Julie Baak  10:37

Of course. Thank you, too.

Steven Newmark  10:38

Well, I was great. Really talking to Julie and learning what she goes through.

Zoe Rothblatt  10:42

Yeah, it’s great to hear from someone that just like fiercely advocates for their patients and understands you know, that it’s hard to live with these conditions and every day that goes by is more symptoms and it’s great to know that she’s out there fighting for patients to get what they need.

Steven Newmark  10:58

Yeah, absolutely. Absolutely. I think the learning for this week is very easy. You know how lucky some patients can be to have office managers such as Julie Baak helping as they go through their difficult patient journey.

Zoe Rothblatt  11:11

Definitely. And also just to educate yourself on these issues. Julie brought up a few…

Steven Newmark  11:16

Yeah.

Zoe Rothblatt  11:16

And we know that there’s so many more. So it’s really important just to learn about what’s happening in your health.

Steven Newmark  11:21

Yeah, let me add also Julie did say this, you still are the number one advocate for yourself. It’s great to have Julie, but you still have to be an advocate yourself as she said, she won’t advocate for you unless you want it.

Zoe Rothblatt  11:32

Definitely.

Steven Newmark  11:35

So with that, 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  11:45

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 and write a review on Apple podcasts and definitely hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  12:00

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

Narrator  12:06

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.

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  00:18

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 help you make informed decisions to live your best life.

Zoe Rothblatt  00:29

And today, we’re going to talk about the 2023-2024 COVID vaccine and the recent approvals there. But first, we do have a few news updates.

Steven Newmark  00:37

Yeah, so first turning to Washington, there’s a bill that we’ve been talking about that would increase transparency and shine a light on PBMs to help with the ultimate aim of lowering health care costs. And this has been a big focus in the House and Senate this year. And, of course, a big focus of ours at GHLF. Right now, the house was set to vote on the bill earlier this week. But it was pulled from the calendar so it’s unclear when it’s going to be scheduled for a final vote. So we’ll keep doing what we do to advocate for the bill and we’ll keep you informed.

Zoe Rothblatt  01:07

Yeah and I think as you say that it just reminds you of how we always talk about that incremental change is always important in advocacy. And that even though it was pulled from getting a vote still has been up for discussion this year. So regardless of what happens, it adds to the possibility of it being passed in the future.

Steven Newmark  01:26

Absolutely.

Zoe Rothblatt  01:26

Next on our news item, it’s Asthma Peak Week. So Asthma Peak Week takes place each year during the third week of September in the US and it’s really a time when environmental factors like pollen molds, weather changes back to school, it all exacerbates asthma symptoms. And typically the highest concentration of asthma flare ups and hospitalizations are during this week out of the whole year. So in comes Asthma Peak Week. as a way to spread awareness about this time a year and make sure people can get control of their asthma.

Steven Newmark  01:57

Yeah, absolutely. That’s not fun, but being aware of it can help mitigate symptoms in the next few weeks.

Zoe Rothblatt  02:03

So here’s a few tips for keeping your asthma under control. Of course, there’s a lot of things out of your control, and you can’t always avoid triggers and some people have uncontrolled asthma. But a really good way to get started is one, keep up with your preventative asthma medications. Two, have an asthma action plan up to date and share it with your family members or your friends or school teachers. Three, wash your hands frequently and try as best you can to avoid your triggers. Four, stay up to date on your annual flu vaccine. And five, consult with your health care providers for any questions you have about your asthma.

Steven Newmark  02:37

Yeah, great advice. Thank you for that. Now moving on to our big topic of the week – vaccines. The COVID vaccine boosters of the approvals are here. We got the green light from the FDA a few weeks ago, and then the Advisory Committee on Immunization Practices, ACIP, which is a group of medical and public health experts who guide vaccination recommendations in the United States also met to vote on recommendations for who should get the vaccine. So let’s talk about what they discussed and voted out in their meeting.

Zoe Rothblatt  03:06

Yeah, and what’s pretty cool is that the meeting is broadcasted live, so anyone can join. So we got the good fortune of joining and hearing all the news updates live and witnessing the vote and the new CDC director, Dr. Mandy Cohen, it started the meeting saying I know we’re going to talk about COVID. But also I just want to acknowledge that there’s a lot of viruses circulating this season. She mentioned how we’re in a different place than we were in the beginning of the pandemic and we’re in a really strong position to fight COVID as well as flu and RSV because we have the tools to fight these viruses through vaccines and medications. And I just thought that was like a really hopeful opening.

Steven Newmark  03:42

Yeah, no, that is good. There’s so much junk that’s out there, floating viruses and whatnot. Unfortunately, had some folks I know come down with RSV recently, which was probably amongst flu and COVID number three on the list, if you will, and a lot of coughing led to what the heck is this? I’m like, yeah, COVID. No, it’s not COVID. Well, what is it? What is it? What is it anyway?

Zoe Rothblatt  04:03

Was it adults or kids?

Steven Newmark  04:04

Adults, adults, okay, and they’re all I think, fine now. So going back to COVID vaccine. So what’s different this year? First and foremost, it’s a monovalent vaccine, which means that it’s only targeting one strain, and that’s the current Omicron strain, which is circulating, it does not contain the original strain of the virus anymore. So they’re calling it the 23-24 mRNA COVID-19 vaccine.

Zoe Rothblatt  04:26

Yeah, I think that’s a move away from calling it a booster shot, which kind of makes sense. Like we don’t call our flu vaccine, a booster shot. It’s just the annual flu shot.

Steven Newmark  04:35

Good point, yeah.

Zoe Rothblatt  04:37

So this one is just now moving to 23-24 COVID vaccine.

Steven Newmark  04:42

That’s a really good point. You know, I’m embarrassed to say I didn’t pick up on that little nuance there. Good point, though. It’s not a booster. It’s a vaccine, like a flu every year.

Zoe Rothblatt  04:50

Yeah. I mean, it was just like an interesting point in history, I guess where we get to witness that change and see how the nomenclature moves as we learn more and like continue to live with this virus, you know.

Steven Newmark  05:01

I would have been okay not living through this part of history. All right, so who was recommended? Everyone ages five and older is recommended to receive at least one dose of the 23-24 mRNA COVID-19 vaccine and people who are immunocompromised may receive an additional dose at least two months after.

Zoe Rothblatt  05:17

And they’re still like an initial dosing series. So just important to you know, check those recommendations, you know, two doses for Moderna or three for Pfizer with at least one dose of the updated, but definitely make sure to talk to your doctor about your scheduling. And then finally, the last thing that was recommended or rather not recommended is that the bivalent mRNA vaccine, the one we got last year is no longer recommended in the US.

Steven Newmark  05:43

Yeah, they do their job. They’re done. And we know that the mRNA vaccines, those are produced by Pfizer and Moderna. What about the non mRNA vaccine?

Zoe Rothblatt  05:52

True, so this actually came up during the meeting, someone said, you know, what, about Novavax? When can we expect authorization for that vaccine? And the FDA spokesperson that was there said how there’s definitely interest in an alternative to mRNA vaccines and we look forward to the potential authorization. But basically, we’re just waiting for that review and for the FDA to authorize it. So it sounded like it’s coming soon, but we’ll have to wait and see.

Steven Newmark  06:17

Okay, so we’re waiting for FDA review. Let’s talk about the current landscape of COVID itself. So it sounds like we’ve got the vaccine. That’s great. But where are we in terms of hospitalizations, long? COVID, vaccine effectiveness? Let’s start with hospitalizations.

Zoe Rothblatt  06:33

Sure. And yeah, this is like kind of how it went along in the meeting. They looked at all this data before they came to the vote. So I guess for our audience, people with chronic conditions, our summary will focus on the parts that were mentioned about that. So first, we learned that with hospitalizations, rates across all groups have been rising since July 2023. And when you look at who was hospitalized 54 percent of children hospitalized had underlying conditions, with the most popular being being premature, neurologic disorders and asthma. And for adults, the rates of hospitalization were highest among adults older than 75. That’s not really surprising to us. But the most prevalent underlying condition amongst adults ages 18 and older for those who are hospitalized for COVID included cardiovascular disease, neurologic disorders, diabetes, obesity, asthma and chronic lung disease.

Steven Newmark  07:26

Oh, wow. Okay. Interesting.

Zoe Rothblatt  07:28

Like it’s a good reminder of why we get the vaccine. I’ve been hearing from people recently of like, you know, if I get COVID, it’s fine. It’s not a big deal. But it’s actually like it really can be a big deal for people with underlying conditions, as evident by this data. We know that vaccines work best when more people are vaccinated, because it provides like a level of herd immunity.

Steven Newmark  07:49

Totally.

Zoe Rothblatt  07:49

And we haven’t reached that with COVID and we probably won’t, but it just a really important reminder of like caring for your neighbor, you know.

Steven Newmark  07:56

Yeah, that’s a fantastic point. I can’t emphasize that enough. Absolutely. Same thing, if you’re feeling sick, stay home and avoid being in front of other people. And if you for some reason, absolutely must be around others, please do wear a mask in those situations. Absolutely though, yeah. You don’t want to spread the disease, even if you yourself are not fearful of it. So what about long COVID?

Zoe Rothblatt  08:16

So the data showed that the prevalence of long COVID was highest amongst 35 to 49 year olds, and some other noteworthy data was so one in four people with long COVID symptoms reported significant activity limitations in everyday life, which that’s a lot of people, one in four. Groups associated with higher likelihood of developing long COVID included female sex, older age severity of your COVID illness, underlying health conditions prior to COVID infections, lower socioeconomic status, and if you did not get the COVID vaccine.

Steven Newmark  08:51

Wow. So that’s interesting about the vaccine because I’ve been reading that there’s accumulating evidence that COVID-19 vaccination reduces post COVID conditions among both adults and children. Yet another reason to get the vaccine

Zoe Rothblatt  09:04

I was about  to say, there you go, another reason to get it.

Steven Newmark  09:07

Totally, totally the thing I’m most scared of with COVID is long COVID. Like, alright, I feel like I’ll be okay with COVID. But I don’t want this long COVID because who the heck that knows what that is, and how long it will last.

Zoe Rothblatt  09:17

Yeah, me too. You know, just personally, I had COVID once, as far as I know. And it was like New Years this past year, and for like, a month or two later, I felt so dizzy. And I was really nervous. Do I have long COVID? When is this going to end?

Steven Newmark  09:31

Yeah.

Zoe Rothblatt  09:32

It slowly faded away. But it was like more so once it was gone, I realized how bad it actually was. And it’s definitely no joke, these lingering symptoms.

Steven Newmark  09:41

Yeah.

Zoe Rothblatt  09:41

And I can only imagine how much worse that would have been if I hadn’t just gotten the booster.

Steven Newmark  09:46

Yeah, for sure. Well, glad that you’re fine now and hopefully more folks will get vaccinated to avoid folks getting ill again.

Zoe Rothblatt  09:52

Yeah, there was a long conversation about vaccine effectiveness in order to come to a vote about what to recommend for this year, they looked at all the data about how vaccines have been working. And just one thing to pull out here is in the conversation about immunocompromised, the data showed that people who are immunocompromised may have reduced protection from COVID vaccines compared to those who are not immunocompromised. This isn’t surprising. We’ve seen this throughout the pandemic. You know, even for flu shot, we know people who are immunocompromised can get a higher dose, sometimes with their doctor. And based on this, that’s why immunocompromised people have been able to get additional doses of the vaccine. I think one really important point here is despite having lower protection, it still does provide protection. So it’s really important to get the vaccine.

Steven Newmark  10:41

Yeah, for sure, for sure. So to find importantly, to find a COVID vaccine near you, you can visit vaccines.gov. With the end of the public health emergencies, it’s important to double check your insurance coverage to make sure you’re getting the vaccine in network. So go to vaccines.gov to find out where or talk to your doctor, of course,

Zoe Rothblatt  11:00

What about if you’re uninsured? What do you do?

Steven Newmark  11:02

Well, uninsured children can get vaccines through the VFC program. That’s the Vaccines for Children program, you could find information on that online, just go to Vaccines for Children. And adults who are uninsured or underinsured will be able to receive no cost vaccines through the temporary Bridge Access Program for COVID-19. So I would say just look for bridge access program to find out more about that.

Zoe Rothblatt  11:24

Yeah, that’s right. We have the tools to fight these viruses, which is a really hopeful place to be as we enter the fall season.

Steven Newmark  11:32

Absolutely. Absolutely. That’s well said. I will say that as my learning that we’re just summing it up, we’re in a better place to fight these viruses than we ever have been so good on us.

Zoe Rothblatt  11:45

And learning for me is I guess, like the terminology moving away from booster and just regular vaccine.

Steven Newmark  11:51

Oh, yeah, that was a cool one. All right. 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  12:02

And if you have any questions, comments, episode topics, definitely email us at [email protected]. Well everyone thanks for listening to The Health Advocates podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, please give us a rating and write a review on Apple podcasts and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  12:24

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

Narrator  12:30

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  00:06

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  00:18

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 help you make informed decisions to live your best life. Today, we’re going to talk about a new federal law that will have a major impact on the healthcare industry, the Inflation Reduction Act known as the IRA. We’re joined today by our colleague and policy expert Corey Greenblatt GHLF’s Associate Director of Policy and Advocacy to discuss this law and how it impacts patients nationwide.

Zoe Rothblatt  00:46

We sure are welcome to The Health Advocates, Corey.

Corey Greenblatt  00:49

Thank you for having me back Zoe and Steven, happy to be here.

Zoe Rothblatt  00:53

So let’s dive in. We’re here today to talk about the Inflation Reduction Act. Steven and I’ve talked about it a little bit, but we’re so excited to have you on Corey to talk about how this impacts patients. Maybe you can kick it off with some quick facts just to level set here.

Corey Greenblatt  01:09

Sure, I’m happy to do that. So the Inflation Reduction Act was signed into law by President Biden on August 16, of 2022. The bill was a very large piece of legislation, it included over $891 billion, that’s billion with a b, in climate spending tax credits and other reforms that many of which have a direct impact on patient access and affordability, both in the short term and the long term of the US. The couple of the health care provisions mainly apply to Medicare patients, because that’s who the federal government typically has the most control over on a year to year basis, though a few of them have actually spilled over into the commercial market as well and we’ll get into that a little later. The provisions that mainly impact health care relate to things like a monthly out of pocket cost for insulin, an annual cap of spending for Medicare beneficiaries and for the first time ever granting the secretary of Health Care and Human Services, the authority to negotiate drug prices for a specific group of medications. All of this we’ll get into more in a bit.

Steven Newmark  02:12

Great. So let’s get into it. Corey, can you talk a little bit about the spending caps that were implemented in the IRA and what effect they have had or will have for patients?

Corey Greenblatt  02:21

Yeah, I’m happy to. These are really the ones that made the most news for regards to patients, because in a lot of ways, they’re the ones that patients will see the most immediately, the IRA implemented two major spending caps. The first one, as I previously mentioned, was a monthly cap on insulin costs. For anyone who gets their insulin through Medicare, they implemented that insulin would no longer cost more than $35 per month for Medicare beneficiaries. And then they instituted an annual cap of $2,000 spending for all Medicare beneficiaries. So one of the great things about this is that this kind of showed what happens when the federal government passes legislation and enforces things on the areas that they have authority to do so and how insurance companies manufacturers, and these large companies that are working in many different areas will usually just keep whatever regulations they have to do for the government for all other plans as well. And this is what we saw with insulin prices, insulin prices were capped at $35 a month for Medicare beneficiaries. And in the time, since the law was passed, Sanofi and Eli Lilly, two of the producers of insulin announced that they would extend these price cuts to commercial health insurance as well, which means that it’s going to benefit non Medicare beneficiaries, because it’s easier for them just to follow one set of rules than to have multiple pricing structures for different types of health plans, which is another reason why we keep passing and pushing to support laws at the federal level in hopes that they will be implemented outside of those federal plans as well. For the annual cap, the IRA implemented a spending cap of $2,000, meaning that for patients on Medicare, they will never pay more than $2,000 during the year for their health care costs. And for many patients, this reduced the financial burden by over half of what they were previously spending. And unlike many of the other provisions in the IRA, these took effect almost immediately. So patients are already starting to benefit from these changes.

Zoe Rothblatt  04:19

That’s great to hear that patients are benefiting from these spending caps. You mentioned, unlike some of the other provisions, maybe we could get into that I know the headliner provision in the IRA is the drug pricing negotiation. Can you talk to us Corey about what it is and why it’s caused so much noise in the healthcare industry?

Corey Greenblatt  04:38

Yeah, you know, that’s a great question. And it’s not really an easy one to answer because a lot of the impact is kind of theoretical. We’re not sure what’s going to happen because we’ve never been put in a situation where the United States government had been able to negotiate drug prices, so we don’t really have a point of comparison, but to get into it a little bit for the first time ever the Inflation Reduction Act gave the federal government the ability to negotiate drug prices for Medicare patients for some of the most expensive drugs on the market that have been on the market for a set number of years. This is something they’ve never been able to do, despite the fact that Medicare is the largest health insurance payer in this country.

Steven Newmark  05:18

Corey, can you just unpack that for a moment? Why was Medicare unable to negotiate drug prices, everyone else can negotiate drug prices, other countries can negotiate drug prices, private health insurance and negotiate drug prices. Why was Medicare our government unable to do so?

Corey Greenblatt  05:32

You know, it has to go back to how Medicare and specifically the Drug Benefit Plan Part D medicare was created when it was created under the Bush administration, one of the stipulations of its creation was that Medicare would not be able to negotiate drug prices. So because that was signed into law, when this aspect of Medicare was created, it would take another law to actually change that. And in the time between when Part D was created, and the IRA was signed, there was never enough momentum to actually change that aspect of the law.

Steven Newmark  06:06

So prior to the Part D implementation in the early 2000s, there was no drug benefit to Medicare.

Corey Greenblatt  06:12

Correct, patients would have to get a second type of insurance, which would oftentimes be prohibitively expensive for patients who did not have an income in their retired life. So Part D was created as a way to fold the drug benefit into Medicare. But in order to get a bipartisan support on it, they had to create a stipulation that was that Medicare would not be able to negotiate drug prices. So it’s a complicated structure. And this is why it’s been so difficult to make this change. And why this provision has the chance to really be a huge impact on just not only patients, but on the healthcare industry on the manufacturer industry on innovation, both good and bad. And we have to acknowledge that there potentially might be some bad and this is why we have to really look at it through all sides, and really have to make sure that patients are staying involved in understanding the impact of this provision, because this provision will have an impact on patients. So to get into it a little bit further, the provision specifically states that the Secretary has the authority to negotiate Medicare drug prices for a quote unquote, select list of high priced single source drugs that have been on the market for a set number of years. Now, that is a sentence that was made in a bureaucratic lab, because that is not something that a patient is going to read and actually understand what that says.

Zoe Rothblatt  07:42

Yeah, I’m a patient and a policy person a bit. And I’m confused. So, Corey break it down for us.

Corey Greenblatt  07:48

Yeah. So this is where actually, we’re at a really interesting inflection point of the IRA, because we are at the process where the federal government is starting to build the guidelines and the regulations by which they’re going to follow as they implement these laws. And one of the things that has actually been lacking up to this point has been the transparency at which they’re going to determine what drugs are going to be on their list of negotiated drugs. They said this sentence, this high price single source drugs for a set number of years, but they haven’t necessarily said what the price point is. They haven’t said what the state set number of years that the drugs will have to be on the market is, and they haven’t really brought stakeholders into the discussion to figure out what the impacts of these changes are going to be. The list will be published next year. So CMS says that the list will be published in 2024. And at that point, they will then negotiate the prices over a period of time. And the negotiated prices will then go into effect in 2026, with additional drugs added annually. So they are saying that they will continue to update this in hopes that they will eventually get drug prices in mass down.

Steven Newmark  09:03

So just to take a pause here. So first and foremost, you started off by talking about the insulin cow how insulin prices were capped at $35 a month for all Medicare beneficiaries. And as a result, manufacturers then lowered the price of these price cuts to all commercial plans as well. So what goes on in the Medicare space has an impact on the private health insurance space as well. So now we’re talking about the drug negotiation space. So the issue becomes if Medicare starts negotiating drug prices that are different, potentially lower than what is being negotiated in the commercial space, that is going to have an impact necessarily.

Corey Greenblatt  09:40

Yes, it’s got a theoretical impact. And we’ve seen…

Steven Newmark  09:43

Theoretical, everything is theoretical.

Corey Greenblatt  09:45

Everything is theoretical, but we have seen that happening with the other parts of the IRA. And there is evidence to show that when federal regulations like this go into effect.

Corey Greenblatt  09:57

Large companies don’t want to have more multiple sets of pricing or formularies, or whatever it might be, they choose to do the thing that is easiest. And the thing that is easiest is follow the most strict regulation, this drug pricing negotiation definitely has the most potential to drastically reduce drug prices as some of the most common and most expensive drugs on the market, and hopefully lead to savings for patients.

Steven Newmark  09:57

Right.

Steven Newmark  10:22

Great.

Corey Greenblatt  10:23

We don’t know that or fact. But we can hope that’s the case.

Steven Newmark  10:25

Okay.

Corey Greenblatt  10:26

It’s difficult to say for sure, because as we’ve said, there’s no point of comparison. However, we also have to look at the potential negatives.

Steven Newmark  10:33

Now patients on Medicare are paying a maximum of $2,000 a month out-of-pocket no matter what, yearly, sorry.

Corey Greenblatt  10:39

Yes.

Steven Newmark  10:40

In part D. So even if drugs were to cost millions upon millions of dollars to the individual patient on Medicare Part D, you’re still only paying $2,000 a year maximum.

Corey Greenblatt  10:50

Correct. So for them, they’re not going to notice as much. But yes, from the government standpoint, they will be the ones who will notice the most difference. And this is where people are hoping that the trickle down will happen on commercial plans. Because if drug prices have to be lowered for commercial plans as well, that’s where you’re going to start to see patients who don’t have an annual out-of-pocket cap of $2,000 start to get these savings. So again, it’s reliant on that trickle down aspect of things.

Steven Newmark  11:19

Is there a possibility that a manufacturer could pull a drug from the market that’s currently on the market?

Corey Greenblatt  11:26

There is potential for that, and they have said that that is the case, if they cannot agree to a price that makes sense for them. Now, again, it goes back to the lack of transparency. We don’t necessarily know what that price point is. But we can’t look at manufacturers and say that they’re not being honest here, because they have access to much more information on what this impact of the price negotiations will be to them. And we also have to look at what the potential and innovation will be as well, ignoring the fact that there are current drugs on the market, and those will probably stay on the market in some form of another, we have to look at what the downstream impact of these pricing negotiations are going to be on drug developments, drug developments will still happen. But we have to acknowledge that we are living in a time when more drugs are being developed for more conditions than ever before, we are at a point where patients have arguably more choice than they have ever had. And if drug developments begin to slow because manufacturers are not able to invest as much into research and development, then patients who are previously waiting five years for a new treatment now might wait 10 years or might wait even longer. And that could potentially mean a patient with a rare condition doesn’t actually see the day that their treatment is created for them. And so we can’t just look at this as a oh, this is doom and gloom. This is a potential and how do we get around this is we make sure that stakeholders are involved in the implementation process of the Inflation Reduction Act, we make sure that patient voices are heard, what would be the impact of this delay on a patient with a rare condition, we need to make sure that manufacturers are heard, what’s the realistic aspect that these innovations would be paused or that this would be taken off the market. And again, going back to patients, what’s the impact on patients if something is not accessible to them when it previously had been? We know that that’s a negative, but we want to make sure that the people who are implementing this, hear it directly from patients, we want to make sure that patients are getting involved and telling them to make sure that they are not forgotten in all of this, the government’s bottom line doesn’t become the most important factor in all of this.

Zoe Rothblatt  13:43

So how can patients get involved in who should they be sharing their story to?

Corey Greenblatt  13:48

It’s a great question. So patients can first off sign up for the 50-State Network, a little self promotion there. But they can get involved by specifically reaching out to their federal legislators making sure that they are aware of their stories, they are aware of their struggles, their experiences, but also there are opportunities to get involved directly with CMS to provide patient perspectives at various stakeholder listening groups, I think the biggest thing to do is to raise your hand and say this is something that potentially impacts me, and I want to work to make sure it is implemented properly. And honestly once that happens, identify yourself with an organization like us and other patient advocacy organizations, we can help figure out where to use that story best. So I really recommend that if this is something you are interested in, tell us and let us figure out where to use your voice.

Zoe Rothblatt  14:39

And like you’re saying this impacts all patients you know, currently there’s a lot in Medicare but it has the potential to affect private insurance as well. So it’s really any patient anyone that wants to raise their voice can step up and do so.

Corey Greenblatt  14:55

Yeah, definitely patients caregivers, family members, this how has the potential to impact everyone. So we should make sure that everyone’s voices raised for this.

Steven Newmark  15:05

And we should mention that there are lawsuits ongoing about specifically about the constitutionality of the IRA.

Corey Greenblatt  15:12

Yes. So a lot of things can change pending those lawsuits, but based on reporting, and I mean, the government always thinks it’s on standard footing when it passes legislation. But it does seem like this is going to be a drawn out process. And we will definitely be tracking, we as in GHLF, will be tracking very closely the pending lawsuits, we’ll be tracking how things are implemented to make sure that accessibility is not sacrificed for any type of minimal savings.

Zoe Rothblatt  15:40

Oh, I love that accessibility is not sacrificed for any type of minimal savings. Okay. You know, I’m always thinking about the patient. I’m a patient myself, and we’re talking about a lot of impacts in this legislation that would help people with chronic disease afford their medications better. And I’m wondering how for people who are healthy for lack of a better term and aren’t dealing with these conditions, how do you explain and square away this kind of legislation? When we’re talking about stifling innovation and lowering costs? How do you present that to the public and deal with these impacts? When you’re dealing with two different groups, someone with chronic disease who takes a lot of medications and someone over here who doesn’t and this will impact them?

Steven Newmark  16:21

Sure. I can answer this one if that’s okay, Corey, essentially, when you read about the IRA in the press, to the extent that you do, you’ll hear a lot about drug costs being lowered, or the idea of holding drug companies accountable, you won’t hear much about the innovation effects or to the extent you do, it’s really buried deeper in these articles. But here’s the deal. Ultimately, we are patient advocates, we speak on behalf of patients with chronic diseases, which is a little bit different than the average American who thankfully doesn’t have the same conditions that our patients are going through. And the idea that we’re going to, the government is going to spend what amounts to a few pennies more for drugs per American citizen to help lead to greater developments and late and better drugs to help those chronically ill patients is something that for our patients is a no brainer. The idea a few pennies, absolutely. So I can live a better life. Absolutely. Absolutely. The cost is not going to go up for me as an individual patient. Absolutely. And how do you say that to the other individuals who don’t take these drugs, what they’re dealing with, you know, that is life, that is how it goes, we all pay for things that we don’t use, there are people that pay who live in cities that pay for public transportation, they never use public transportation, there are people that pay for the fire department, and have never once called the fire department to come to their house. In the insurance world, there are people that are very healthy, and pay a lot of money for insurance, and don’t use the insurance in the same capacity that a lot of sicker individuals pay for. And that’s life. That’s the way it goes. And life can be unfair and talk about unfair, we represent a bunch of patients who, through the dint of the unfairness of life had been given a blow of living with chronic condition. And what we’re saying is if the rest of our society can pay a few pennies more, if our government could pay a few pennies more to help these individuals obtain better medications, medications that will continue to work longer into their lives, and have them live their best lives. That is a much better society that we should all want.

Zoe Rothblatt  18:20

100% like you’re saying, it helps you live your best life so you can get up and go to work every day and participate in society in ways that you may not be able to without your medication. I like, you know, you brought it back to society, it’s not just about the individual and saying, oh, this only impacts these people, it’s going to cost me money. It really does end up impacting society as a whole.

Steven Newmark  18:41

Yeah, it’s a society thing. Again, we pay for things that we don’t use people without children pay taxes for schools that they will never use. But do you want to live in a society where kids don’t go to school? Do you want to live in a society where people don’t have access to medications that are potentially life saving, or potentially allowing them to get out of their beds and go to work and be productive members of our society? That’s not what we want. And if a law like this is going to stifle innovation, and is going to lead to less development of drugs, then that is a law that needs to be remedied to say the least.

Corey Greenblatt  19:12

I couldn’t have said it better myself. And I think one of the other things to say is this is something that we are constantly looking for more patient perspectives on, we as the organization. So if you have seen your access, be impacted by this in whatever way, reach out. And I know it’s hard to kind of say that that happened. But if you think it happened, reach out, tell us what your access issues might be. Or if this is something that you’re worried about, let us know. Let us know what your perspective is on these kind of laws and how they’re implemented because we want to make sure we’re accurately representing you patients.

Zoe Rothblatt  19:48

Definitely and even if you don’t know like, where to get started or how this law may be impacting you, still reach out and we can we’ll walk through it with you and look at it together and help share your story.

Steven Newmark  19:58

Yeah, absolutely. And I guess to put a cap on this, these laws affect all of us. So the articles may seem a little dry, but the news articles but they’re worth reading.

Corey Greenblatt  20:07

Completely agree.

Zoe Rothblatt  20:08

Or just listen to The Health Advocates.

Steven Newmark  20:11

Fair. Yeah, fair point.

Corey Greenblatt  20:13

Well, Zoe, Steven, thank you for having me today to discuss this. This a lot of fun.

Steven Newmark  20:17

Corey, thank you for joining us and explaining the Inflation Reduction Act, the IRA. The IRA, is not just something that funds your retirement, I guess, who knew.

Zoe Rothblatt  20:25

It’s not just a guy named Ira?

Steven Newmark  20:28

It’s not just my uncle Ira.

Corey Greenblatt  20:30

We all got an uncle Ira.

Zoe Rothblatt  20:31

Definitely. Well, Corey yeah, thank you so much for breaking this down for us and our listeners, we really appreciate you coming on.

Corey Greenblatt  20:38

Happy to be here and always happy to join you too.

Zoe Rothblatt  20:41

Well, Steven, that was a great interview with Corey.

Steven Newmark  20:43

Yeah, absolutely.

Zoe Rothblatt  20:46

What did you learn today?

Steven Newmark  20:47

You know, I learned how difficult it can be to get your head around complex legislation and new laws and Corey was great in breaking that down for us, and most importantly, its impact on patients.

Zoe Rothblatt  20:58

Definitely. I totally agree with that Corey really broke down for me, you know what changes have happened now and what to look forward to in the next few years what we should keep our eye on. So I’m really grateful for that.

Steven Newmark  21:12

Well, we hope that you’ll learn something too. And before we go, we definitely want to encourage everyone to check out all of our [email protected]/listen.

Zoe Rothblatt  21:21

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, please give us a rating and write a review on Apple podcasts and definitely hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  21:36

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

Narrator  21:42

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

Today, we’re going to again talk about COVID. And the wave that’s going around it feels really important with our community to talk about the recent rise in cases. First, we do have a few news updates, though as always.

Steven Newmark  00:43

So the first thing to mention is Medicare price negotiations, the Biden administration is set to announce a list of the first 10 drugs up for negotiation by Medicare.

Zoe Rothblatt  00:52

This is in an effort to lower prescription drug prices by leveraging the government’s purchasing power, and it’s a result from the recently passed Inflation Reduction Act.

Steven Newmark  01:02

Over the next two years, another 30 drugs are going to be selected for negotiated prices beginning in 2027, and 2028, respectively. So we’ll be watching to see how this might affect the medications many of our listeners take as well as how this will impact innovation and the development of future drugs.

Zoe Rothblatt  01:20

for sure. And if you are a Medicare beneficiary, you likely won’t feel the effects of this until 2026.

Steven Newmark  01:27

In other news, asthma related and emergency visits increased during the wildfire smoke episodes recently. New CDC data shows that such emergency department visits were 17% higher than expected in the U.S. on days when the wildfires in Canada carried heavy smoke into parts of the United States.

Zoe Rothblatt  01:43

Yeah, on the worst air quality day in New York that we had this June, emergency department visits related to asthma jumped 82% higher than expected statewide.

Steven Newmark  01:54

Yeah, from a public health perspective, as wildfire smoke becomes more frequent and widespread, there really needs to be better protection for people at risk of asthma attacks.

Zoe Rothblatt  02:02

And on a personal level, if you live with asthma, Asthma Peak Week is coming up. This is the third week of September and it’s a time in the U.S. where due to the change in weather, environmental triggers and back to school, there’s a rise in asthma attacks and a rise in hospital visits. So it’s just you know, along with this new data and knowing Peak Week is coming, it’s a good reminder to stay up to date on your treatment plan and call your provider to set up an asthma action plan if you don’t have one already.

Steven Newmark  02:31

Yeah. In other news, there’s good news on the vaccine front, the FDA approved a vaccine that aims to protect newborns against RSV by vaccinating pregnant people in the latter part of their pregnancy.

Zoe Rothblatt  02:41

This vaccine has also been approved for use in adults 60 and older. So now it’s just getting another authorization.

Steven Newmark  02:48

Before it can be used the Advisory Committee on Immunization Practices must first recommend the vaccine and then the CDC director must accept that recommendation. This is expected but the next meeting is not set until October and so something to be warned about.

Zoe Rothblatt  03:01

But you know, since the peak of RSV may come sooner, I saw that a special meeting may be called so we’ll definitely stay up to date on that.

Steven Newmark  03:10

Great. Hopefully that does happen. Then moving on COVID. We just talked about EG.5, which is spreading quickly. But experts say that it is not more dangerous and other variants. And now we’re hearing about yet another new variant.

Zoe Rothblatt  03:22

I know so this new variant has been seen in multiple countries around the world, including the US its numeric name BA 2.86, also nicknamed pirola on social media. There haven’t been so many cases of this as compared to what we’re seeing with the EG.5 variant but there’s a lot of discussion around it because it’s highly mutated and looks like it could go past our existing immunity.

Steven Newmark  03:47

Yeah, when compared to the XBB 1.5 variant, which drove away earlier this year and was picked out to be targeted for the fall booster shots. This new variant has 36 mutations. And these mutations include changes that key parts of the virus that could help the variant escape the body’s immune defenses from prior infections or vaccinations.

Steven Newmark  04:07

Yeah, so what precautions should we be taking? The CDC data shows that emergency room visits for COVID in adolescents has nearly doubled over the past week. It’s important to note that not all emergency room visits turn into hospital admissions necessarily, but it is a metric that officials are closely tracking as an early indicator of the spread up the virus especially as official case counts become unreliable to measure infections.

Zoe Rothblatt  04:07

And experts still consider this new variant technically a part of the Omicron variant family, though that said it could change if it spreads more widely. You know, as more people become infected, it gathers in the host it’s able to mutate and change. So we have to keep a close watch on it and just get a clearer understanding of the transmissibility in the coming weeks.

Zoe Rothblatt  04:53

You know, this increase coincides with back to school both like university and younger children which begs the question of if masked mandates should come back at schools.

Steven Newmark  05:04

I think based upon past performance, your it is going to be a near impossibility to have any kind of a mandate for a masking anywhere in the United States. That’s just what I think.

Zoe Rothblatt  05:16

Yeah, I agree. But we know they work, so you can stick them on.

Steven Newmark  05:20

That’s true. That’s true. But hopefully, we have reached a point in much of the country where at least you have the ability to wear a mask. In fact, I remember a brief moment where there was actually talk of having a mandate to the effect of that you’re not allowed to wear a mask in school. So I think we’re at this stasis point where you can sort of as my kids say, you do you, so I think we’re sort of at that stasis point. Walking around and traveling around, I see a higher number of people in masks and I definitely at least again, from my vantage point, anecdotal, nothing, no statistics involved, I don’t see folks being bothered who are wearing masks.

Zoe Rothblatt  05:56

Yeah, I agree. The pushback has definitely lessened. It’s under the category of you do you. I will say, though, that a lot of communities are at a medium COVID level category I saw the CDC put out and they said consider returning to masking and other precautions, especially for at risk Americans. There’s no formal guidelines, but it’s good to look up transmission rates in your community, the CDC is still putting out that data.

Steven Newmark  06:23

Yeah, absolutely. Consider where you are considering how you know what how close in proximity you are to strangers and act accordingly. I’m back to wearing a KN95 mask when I’m on public transportation and other close quarters. And that’s a personal choice of mine.

Zoe Rothblatt  06:38

And just looking at some of the other numbers. So deaths, obviously one of the other main indicators from the CDC on the COVID landscape rose this week for the third week in a row. It’s up 21.4% from the previous week, although I will say it’s still you know, less than what we’ve seen in the past.

Steven Newmark  06:58

Yeah, and we’re specifically seeing more emergency department visits in states in the southeast, which is not surprising. It’s very hot there. And a lot of those folks are indoors or it’s more where it’s obviously it’s more transmissible. But ED rates, emergency department visit rates have risen in Louisiana, Mississippi, Alabama, Florida and South Carolina this week.

Zoe Rothblatt  07:19

And you know, despite the increase, just going back to the point, I just made it still far below what we’ve seen in the U.S. in the past, the current level of COVID hospitalizations is a third of it was a year ago at this time. So even with the bad news, that yeah, we’re seeing a rise in visits, and it should set off some alarm bells to be careful. It’s good to know that it’s not as much as it’s been in the past years.

Steven Newmark  07:42

Yeah, no, absolutely. I guess that’s right to sort of level set it and just worry about where we are. We do have Labor Day coming up and we’ve seen rises in the past after certain gatherings. But hopefully, labor days is one that we do outside. So but that being said, even with that we’ll expect to see some rise probably after post Labor Day.

Zoe Rothblatt  08:00

And I know at home tests aren’t as perhaps easy to come by since the end of the emergencies. We talked about the different insurance coverage in a recent episode. But we still have those tests. So probably a good idea to just test before you gather this weekend. A good question is will COVID tests pick up the new variant? And they are expected to still work based on early analysis but obviously experts are going to keep looking into that as it spreads.

Steven Newmark  08:26

Right. Absolutely. So we’ll see how that works. So talking about tests. That’s good news. Of course, the big question is whether the vaccines are going to work on this. And for that it’s too soon to know.

Zoe Rothblatt  08:37

Yeah, the CDC Advisory Committee is scheduled to meet on September 12, to discuss whether to recommend updated vaccines, of course, it’s expected that they will and that those shots should be available soon after, like around mid September. And as a reminder, the vaccines will once again be monovalent targeting the single strain instead of the bivalent, that we’ve gotten in the last year,

Steven Newmark  09:01

Right. And there’s a balance between wanting to protect folks now during this rising cases, but also wanting to protect folks for the bigger peaks that are expected to happen in November, December. And so we know that if we vaccinate too early immunity wanes, and that could have more severe consequences on a later peak. So it’s a real tough balancing act. And obviously, for individuals, you talk to your doctor and figure out what’s best to do and for the public health at large. Well that’ll be really for the CDC and state and local health departments to try and figure out what’s best. You know, when to get people vaccinated.

Zoe Rothblatt  09:33

Definitely I always arranged with my specialists about when to time my flu and COVID shot and what they think is best for me. So definitely encourage everyone else to work with your doctors as well.

Steven Newmark  09:44

Totally.

Zoe Rothblatt  09:46

All right, Steven, that brings us to the cause of our show. What did you learn today?

Steven Newmark  09:50

Well, I learned about the asthma related emergency visits increasing during wildfire smoke episodes. I guess that sounds like it should be axiomatic but it was still good information to learn and then get some specific numbers.

Zoe Rothblatt  10:01

And also for me just getting some numbers around hospitalizations and deaths around the country and what we should be looking at in terms of the rising COVID cases right now.

Steven Newmark  10:12

Absolutely. Well, we hope that you’ve 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  10:22

And don’t forget to email us at [email protected]. If you have any questions, comments, thoughts on that episode, we’d love to hear from you. 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, please give us a rating and write a review on Apple podcasts and definitely hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  10:44

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

Narrator  10:50

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. Today, we’re going to continue our discussion on COVID and the recent rise in cases with the new variant that we started talking about in our last episode. But first, let’s start with some news updates.

Zoe Rothblatt  00:39

That’s right first on our list is some prior authorization news. So starting next month, UnitedHealthcare says it will move forward with plans to drop prior authorization requirements for a range of procedures, including dozens of radiology services and genetic tests, among others.

Steven Newmark  00:56

Great, great news. United says the removals will take effect September 1 and November 1, depending on which plan you have across the vast majority of its plans.

Zoe Rothblatt  01:05

And UnitedHealthcare is not alone in making this decision. Other health insurance plans have stepped up and said the same thing. Cigna and Aetna announced plans to roll back some prior authorization requirements. So this is good news. We hear a lot from providers saying how it’s an administrative burden and a very large time suck, time that could be spent with patients. And then we hear a lot from patients in getting delayed about their medication because the process just goes on and on. And then…

Steven Newmark  01:32

Totally.

Zoe Rothblatt  01:33

Obviously they’re not getting their medication, they don’t feel good, it’s like a big cycle.

Steven Newmark  01:37

Totally, and for the procedures that you’re describing the idea of not needing a prior auth, that’s a really big deal for patients, just streamline the process. So very happy to hear that.

Zoe Rothblatt  01:48

Definitely. And it’s great to see that other plans are following suit. And hopefully we’ll have more news on that as it gets rolled out.

Steven Newmark  01:54

Excellent. Well, more good news. A new report from the CDC said the percentage of US adults living with long COVID has fallen to 6%.

Zoe Rothblatt  02:03

That’s right. In early June 2022, the CDC found that 7.5% of Americans aged 18 and older were experiencing long COVID symptoms. Meaning they were still having symptoms at least four weeks after they cleared the infection. And now the new study said by mid June 2023, so a year later that number has fallen to 6%.

Steven Newmark  02:24

Yeah, I mean, this could mean that in a certain period of time long COVID just goes away, it could mean that the newer variants are not causing long COVID as much as the older ones, you know, it could be variety of factors, and it’s something that more research is needed to pinpoint. But all in all, obviously, this is good news.

Zoe Rothblatt  02:40

The CDC report did say though, that more than one in four, 26.4%, of long COVID patients reported significant limitations in their ability to perform day to day activities. And that was currently in June 2023. And the author said this percentage had not changed much since the year before. So what this is saying basically that the people that it’s still impacting, so you know that 6%, it’s one in four of them are impacted on a day to day basis.

Steven Newmark  03:09

Yeah, so which brings us back to what we always like to say it highlights the importance of COVID prevention itself. So that includes vaccines, masking when appropriate, and just staying the heck away from anyone who may have been exposed to COVID.

Zoe Rothblatt  03:23

We mentioned recently in a news update on our show that the NIH is looking into long COVID treatments. So hopefully I know 6% can sound low, but it still is a large group of people dealing with these impacts. So hopefully we’ll have more answers on treating long COVID soon.

Steven Newmark  03:39

Yeah, absolutely. Absolutely. Well, to get into our main topic. In our last episode, we spoke about rising COVID cases being seen around the country. Some places are seeing 50% or more increases week to week, there’s no mistaking two things. Number one COVID is back number two is not as bad as was in the past.

Zoe Rothblatt  03:58

Well back, did it ever go away? But I know what you mean, it’s now more prominent than it has been this summer.

Steven Newmark  04:05

It’s like that houseguest that you sort of forgot, like, oh, is are they still living with us?

Zoe Rothblatt  04:10

So as a reminder, from our last episode, there’s a new variant going around, which is one of the reasons why we’re seeing the rising cases. It’s the EG.5 variant, which is the largest portion of new COVID infections in the US. The good news, it’s from the Omicron family and as with other variants, it’s been you know, less lethal and more mild symptoms.

Steven Newmark  04:33

Yeah, so we’ll see, you know, keep tracking it. You know, we thought now would be a good time to review some basics as we deal with this next round of COVID. Here we go. Dog days of summer, 2023 still talking COVID.

Zoe Rothblatt  04:45

Well, here’s a good question. We’re in summer 2023, the public health emergencies have ended like what does this mean for insurance coverage of at-home tests?

Steven Newmark  04:55

A great question. So it depends on your insurance. Those on Medicaid, tests are covered until September of 2024, you have a little over a year to still obtain at-home tests. Private insurance, the coverage is now optional, so you have to check with your private health insurer, very few are covering at-home tests. If you have a flexible spending account, an FSA, or a health savings account, an HSA, you can use that money to purchase at-home COVID-19 tests. And then for those who are uninsured, there is a stockpile of free tests. And you can go to testinglocator.cdc.gov to find a location of where to get an at-home test. That’s testinglocator.cdc.gov.

Zoe Rothblatt  05:39

And for in person testing, it’s also just really important to check the providers in your network and check the coverage there as well.

Steven Newmark  05:47

Yeah, absolutely. Good, good point, Zoe.

Zoe Rothblatt  05:50

Well, another big question I have is do the at-home tests expire? I still have some of those free ones that came from the government. And recently I was thinking like, can I even still use those?

Steven Newmark  06:01

Yeah, check the box. Expiration dates generally range on these tests from six months to two years, depending on the particular brand. The data in the box may actually be incorrect, as the FDA itself extended some of those dates in that some of those dates were actually listed as almost too soon, if you will. But yeah, definitely check the dates. And when you use tests that you have, perhaps stockpiled yourself, start with the ones that are going to be expiring first. You know, another thing to keep in mind is that the at home tests can get too hot or too cold. You know, these tests are made to withstand normal temperature conditions from regular shipping processes. But if your test has been, you know, living inside your car all summer, you know, that might be caused to consider it deffective or technically expired.

Zoe Rothblatt  06:48

So kinda like you know, your medications. I know some medications have to be refrigerated. But typically for pills, it’s like just keep them in a room temperature environment.

Steven Newmark  06:57

Right, right. You don’t want to keep that stuff in your car, things like that are something to keep aware of. You know, when you take the test, we’ve all probably this point taken the test multiple times, if you get a positive, you’re infectious. Don’t try to talk yourself out of it and say, yeah, I don’t know how accurate these tests are. Positive is positive, full stop, you’re infectious.

Zoe Rothblatt  07:00

Or like me you do a second one and you think it’s gonna be differen and it’s not.

Steven Newmark  07:21

Yeah, it’s not how it works. When they say that the tests are not entirely accurate. It’s the other way, in the sense that sometimes you get a false negative. But that being said, the faintness of the line does provide clues. The stronger the line, the more bold it is, that means you’re very contagious. If you can barely see the line, it means that you’re at the beginning or at the end of your window.

Zoe Rothblatt  07:43

That’s right. I remember when I was positive, the line turn dark, like immediately when my sample hit the test.

Steven Newmark  07:50

Yeah, no 15 minute wait, necessary. Yeah, I remember that too.

Zoe Rothblatt  07:53

I know, I shut off that timer nearly immediately. And then when I tested the 10 days after to see what was going on, it definitely took some time. And it was very faint. So yeah, I guess just confirming that I had that experience.

Steven Newmark  08:06

Ya no, for sure.

Zoe Rothblatt  08:08

So if you do an at-home test should you be reporting this to the Health Department?

Steven Newmark  08:14

Nope, not anymore. Not really necessary. Wastewater is where it’s at these days. And fortunately, that doesn’t require you to do anything.

Zoe Rothblatt  08:22

And like we talked about with the end of the emergencies, like the way CDC has been tracking information is a little bit different. So along with wastewater, they’re also looking at hospitalization as like an important indicator of the severity of COVID.

Steven Newmark  08:35

You know, I would also say if you test positive, you should isolate for five days at a minimum. So five days starting from day zero and day zero is the first day of symptoms, it’s not the first day that you tested positive. So you started feeling symptoms, but didn’t test for two days, I would count the zero as when you first started feeling symptoms. Yeah.

Zoe Rothblatt  08:55

And in terms of leaving isolation, technically, the CDC says day five, but two out of three people will still be infectious. So if you do leave isolation on day five, it’s important to still wear a mask, it’s really best to stay in isolation until you have a negative test or it’s been at least 10 days. And obviously this goes without saying wait till you feel okay, which might be a little bit longer for people in our community who tend to get a little bit more of a severe infection. So just definitely like call your doctor and wait till you’re okay to be out and about.

Steven Newmark  09:26

Yeah, if you’re curious about when you were infected or where you were infected, it’s basically give or take about 48 hours before your symptoms first began. Just a little side digression. I definitely whenever I get sick, you know from a contagious virus. I am always thinking where did this come from? Where did I get it? And I retrace my steps and as my wife always reminds me, it is impossible to figure out where you got it from. So it is such an, a futile exercise and yet I go through it every single time.

Zoe Rothblatt  09:53

Especially living in New York City like the possibilities are endless.

Steven Newmark  09:58

Yeah, totally. It happens. that’s part of life is getting sick.

Zoe Rothblatt  10:01

And if you are infected, you know, if you’re eligible, get Paxlovid, talk to your provider also in advance of getting COVID. So you can be prepared and have a plan. I know when I’m sick, it’s like making a phone call and making a plan feels impossible when you feel so sick. So it’s always best to be prepared and have that plan in place, especially if you know, you may not be able to reach your doctor so quickly. So you could get feeling better, as quick as you can.

Steven Newmark  10:25

Yeah, if you’re lucky enough to have a good relationship with your doctor, you know, maybe you can just send him a note to get you the prescription for Paxlovid. And, you know, go from there to make life that much more manageable. So how long will you have symptoma for?

Zoe Rothblatt  10:39

That’s a good question. Obviously, this is really nuanced, given the long COVID discussion, but typically six to 12 days, maybe longer, maybe shorter, it really depends on a lot of individual factors. Having symptoms doesn’t necessarily mean you’re infectious. Like we said, people have lingering symptoms once the infection has cleared. And a great way to know if you’re infectious is obviously you know, to test. If you’re negative, you’re clear.

Steven Newmark  11:05

Yeah. Should you wear a mask?

Zoe Rothblatt  11:07

Well, okay, if you’re in your house, masks work, let’s repeat that masks do work, especially N95, a high quality mask is really important.

Steven Newmark  11:18

Yeah.

Zoe Rothblatt  11:19

And if you’re going outside, you know, you don’t necessarily need to wear a mask, if you’re walking your dog, let’s say, and you’re not going to be around people. But just be mindful if you live in a busy area, it might be best to throw on a mask.

Steven Newmark  11:32

Definitely. Obviously, if you live in an apartment building, you’re gonna go walk a dog, the chances of you interacting with somebody in an apartment building are much higher than if you live in a more sparse neighborhood and you have a house, use common sense. I think we all know if you do have housemates, loved ones, living under the same roof, definitely mask up definitely folks should mask up, you know, while you’re still testing positive.

Zoe Rothblatt  11:56

And perhaps the biggest question on all of our minds, or maybe just my mind, if you do get infected now, like, how long are you immune for?

Steven Newmark  12:05

That’s a great question. I mean, I was trying to cheer up a friend of mine who just got sick. And I said, well, you know, look, you probably got the latest variant, and it’ll give you some protection in the coming months, something less to worry about, you know, wasn’t really working because he was miserable. But, you know, my nonmedical thought on this is that, yeah, it would probably confer some kind of a little bit of quasi immunity. Gosh, is that how mealy mouthed can I be about saying that, but yeah, it’ll probably be helpful. There is no updated vaccine just yet. We’re expecting it to be available in around September, I think is the latest. I don’t know if you’ve heard anything differently. Zoe?

Zoe Rothblatt  12:44

Yeah, I think I’ve heard the same as you.

Steven Newmark  12:47

Yeah, I would almost consider if you were to contract COVID now, I would almost consider to be like getting a booster for now. And then of course, talk to your provider about when it means you should actually get the fall booster when it’s available. And it most likely would mean delaying when you get the fall booster.

Zoe Rothblatt  13:02

Right. That makes sense. You know, so the bottom line, another COVID wave is here. Thanks to our immunity, 2023 looks very different. That’s immunity from the vaccine and like we just said, from infections, but we can always still use our go to tools to help minimize the spread like handwashing, distancing, masking. And yeah, we’ll stay up to date on what the vaccine schedule be for this fall.

Steven Newmark  13:26

Yeah, absolutely. So we shall stay on top of it.

Zoe Rothblatt  13:30

As we always do. All right, Steven, that brings us to the close of our show. What did you learn today?

Steven Newmark  13:36

Well, I was very happy to learn about the prior authorization requirements being dropped from a range of procedures from UnitedHealthcare. So that’s great to hear. And great to hear that other health insurers are following suit. So good news.

Zoe Rothblatt  13:49

And I learned from you about the distinctions in coverage of at-home tests depending on what insurance you have.

Steven Newmark  13:59

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  14:08

And if you have any questions, comments, episode topics, definitely email us at [email protected]. I heard from a few of you this week, and that was really exciting. Thanks, everyone 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 and write a review on Apple podcasts and hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  14:33

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

Narrator  14:39

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

Narrator  00:00

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

Steven Newmark  00:08

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  00:28

Today we’re gonna talk about COVID, the recent rising cases and what’s the same and what’s different during this new phase, but first, we do have a few news updates.

Steven Newmark  00:36

A CDC panel recommends a RSV shot for infants. A few episodes ago, we reported about how the FDA approved an RSV shot for infants, and now the CDC panel is recommending the same.

Zoe Rothblatt  00:50

Yes. So it’s the Advisory Committee on Immunization Practices. And they voted unanimously for this shot to be given to babies under eight months who are entering their first RSV season. And the other group is those ages 18 to 19 months who are increased risk of severe diseases if they’re entering their second season of RSV.

Steven Newmark  01:10

Yeah, the panel also unanimously voted to include the new drug to the federally funded Vaccines for Children program, which would provide the shot at no cost to eligible children whose families are unable to pay.

Zoe Rothblatt  01:10

And this monoclonal antibody is actually the first of its kind to be widely available beyond just like a small population of immunocompromised children. The other option is recommended only for high risk infants who are born severely premature at 29 weeks or earlier. So it’s exciting to see approvals here for some more children.

Steven Newmark  01:44

Yeah, it’s great that we now have a preventive shot for infants for RSV. RSV was one of those multitude of illnesses that were floating around in the ether last winter, and certainly put a little sliver of fear in the air. So hopefully, one less thing to worry about.

Zoe Rothblatt  02:12

For sure. And we already have the RSV vaccine for adults age 60 and older, there might be one coming soon for pregnant women. So you know, we’re seeing good advancements here on protections for RSV.

Steven Newmark  02:25

Excellent.  Excellent. Well update on drug shortages, we’ve been hearing here at GHLF from our patients about issues getting methotrexate either they have been denied the prefilled syringe and had to go to a vial and syringe. I don’t know if you’ve heard of that, Zoe?

Zoe Rothblatt  02:39

Yeah, that actually happened to me.

Steven Newmark  02:41

Oh, dear.

Zoe Rothblatt  02:42

I got denied my prefilled pens and had to go to vial and syringe and when I went to the local pharmacy, it was out of stock, they were able to order it, but they had a lot of questions on when the next shipment would come through. I ended up getting it fine. But I’ve definitely heard the same thing from a few people in the community. Actually, someone just reached back out today who was having issues and they said their pharmacy got them a three month supply of methotrexate. So that was really exciting to hear from them about that update. So I’d say if you’re having trouble getting it, definitely talk to your pharmacist about options like getting an extended prescription. So you know when there is supply, you can get it. I also heard of another patient saying that there’s a distinction between methotrexate with preservatives or not. And they spoke to their pharmacist and doctor about it because one of them was in stock versus another there would be a delay for and they figured out that they could take it. So just it’s important to talk to your doctor and pharmacist about the different options during this time. And obviously, we want everyone to have access to regular treatment. We know how hard it is to get disrupted and delays. You know, of course the physical impact is obvious, but it’s really like emotionally taxing to have to go through all of this.

Steven Newmark  03:50

Yeah, absolutely. It’s awful. You know, there’s no sugarcoating it, that we live with these chronic conditions. And now more things are put in our way more barriers, if you will, are put it in our way to obtain needed medications. All we can do is power through and fight through and do what we can. And I would just say if you’re having issues, please do let us know at GHLF. You know, we will do our best to continue to advocate on a more global level while everyone advocates individually for themselves, we will do so on a larger level.

Zoe Rothblatt  04:17

Definitely. And you could always email us at [email protected] and we’ll get back to you.

Steven Newmark  04:23

Great. Well, turning to our main issue today, an issue that I think you may have heard of, this diseased called what is it called?

Zoe Rothblatt  04:32

Does it start with a C?

Steven Newmark  04:34

Yeah, yes, gosh, it’s terrible to talk about yet again, COVID. But we actually put together this episode with the intention of just giving a generic update, but unfortunately, we are seeing an uptick in COVID around the country. So let’s get into it to see where we are currently. So summer 2023 update. We are in a very different place than we were of course six months ago, 12 months ago, 24 months ago, but COVID-19 is still around. And I hope you continue to join us as we continue to relay information relevant to our community. So here we go our current state of affairs.

Zoe Rothblatt  05:08

Well just a pause there before we jump into the current state of affairs. I think it’s really important because public health messaging has been dwindling. And I don’t know about like lacking, but it really hasn’t been as much as it has been around COVID. So I feel like it’s really important.

Steven Newmark  05:22

Yeah.

Zoe Rothblatt  05:23

That we dive into these updates together, especially for our community who’s hungry for information, we still send out bi-weekly newsletters with COVID updates, but it’s an important time to take a pause, especially as we enter the fall season.

Steven Newmark  05:23

Yeah, for sure. We’ve spoken about this many times on the podcast. But COVID-19, as with other illnesses is different if you have a chronic condition, it’s different, of course, if you’re elderly, so it hits different portions of the population differently. And for our population, it still matters. And you know, frankly, it should matter for everyone. And even if you don’t have a chronic condition, you likely don’t want to contract COVID. But also you don’t want to spread COVID to others who are more vulnerable than you are.

Zoe Rothblatt  06:03

So let’s jump into the state of affairs. We had what seemed like a quiet few months here in the US.

Steven Newmark  06:09

Yeah, it was great.

Zoe Rothblatt  06:10

Now we’re seeing an uptick in cases. There’s actually a new variant, which we’ll get into a little bit more in the episode. We’re also seeing a rise in hospitalizations. It’s not a concerning amount, but it’s definitely still something to be mindful of.

Steven Newmark  06:24

Yeah, no, absolutely. Absolutely. You know, according to the CDC, there’s three early indicators that are starting to rise, wastewater, emergency room visits and positive tests. Now, to be fair, these were at very low levels just a few short months ago. But still, we are starting to see increases, which is not surprising. We’ve seen this sort of southern summer wave throughout the pandemic, it gets very hot and people go back indoors getting their air conditioning. So it’s not unsurprising to say the least

Zoe Rothblatt  06:54

Right? Like that just jogged my memory, like Delta got big in the summer, what was that two years ago? So it’s definitely not surprising, but this is definitely like, much less severe than Delta was.

Steven Newmark  07:06

Yeah, for sure. You know, some good news since late January 23, excess deaths have reached pre pandemic levels. So we return to our pre pandemic levels when it comes to excess deaths in the country. And this has been a massive reprieve, of course, now, not to be morbid, there are some reasons for this, and one of them is morbid, and that is essentially you can’t die twice. COVID-19 has made its way through a lot of the most medically fragile people over the last three years and those deaths perhaps are leading to fewer deaths today.

Zoe Rothblatt  07:35

And also just immunity from either the vaccine or contracting COVID. Majority of the population probably has some level of immunity now and it’s holding up.

Steven Newmark  07:45

Definitely.

Zoe Rothblatt  07:45

To keep us protected and reduce death rates.

Steven Newmark  07:48

Yeah. So, we’ll be watching as the fall approaches, which is the traditional start of respiratory illness season in the US. So we’ll see what happens.

Zoe Rothblatt  07:56

Well, also, Steven, we’ve been talking about, I feel like in our news updates a lot recently, how millions of Americans have lost Medicaid, especially when the public health emergency ended in the last few months, it’s been a really big surge of people losing coverage. So I just wonder how also that’ll impact case rates this fall.

Steven Newmark  08:13

Yeah, it’ll certainly affect access to treatments. And I don’t know how it will affect actual case rates. It may be that when you don’t have insurance, you’re less likely to proactively seek out medical advice generally, which may mean you don’t seek out the vaccine come the fall, which could have an impact. It could also have an impact on the numbers in this regard. Folks who don’t have insurance are maybe less likely to show up at a hospital or a doctor’s office. So those particular numbers may not be reported. So we’ll see what happens.

Zoe Rothblatt  08:46

That’s literally the motto with COVID – we’ll see what happens. We’re always chasing this ever evolving virus.

Steven Newmark  08:53

Yeah, I know.

Zoe Rothblatt  08:54

So the new variant, we got another kid on the block EG.5, it now makes up the largest portion of new COVID infections in the US.

Steven Newmark  09:03

Okay, yeah, I know EG.5, it’s been nicknamed Eris. The WHO designated Eris as one of its, quote, variants under monitoring. So it is not yet a variant of interest or concern monitoring is a lower designation, if you will.

Zoe Rothblatt  09:18

That’s good.

Steven Newmark  09:18

Yeah, I guess that’s good. It’s part of the Omicron chain. It’s as with other Omicron variants, it’s less invasive and less lethal in the body.

Zoe Rothblatt  09:27

And similar symptoms to look out for cough fever, chills, shortness of breath, fatigue, muscle aches, headaches, runny nose, those seem to be the symptoms for every virus.

Steven Newmark  09:37

Yeah, I know.

Zoe Rothblatt  09:38

Yeah. Hard to distinguish what’s going on, but you have symptoms that get checked out.

Steven Newmark  09:43

So we’ll see. I mean, the prediction is that EG.5 may be responsible for more hospitalizations, but as not increasing the number of cases in intensive care or deaths. So keep our fingers crossed on that. Now the big question, of course, is whether our new boosters are going to work against EG.5.

Zoe Rothblatt  10:00

That is a good question. As we know, health officials have been preparing for this fall with a new COVID vaccine with the formula targeting that XBB sub variants that have accounted for most of the infections in 2023. So it’s different than what we’ve previously got that always had the original strain and the vaccine.

Steven Newmark  10:17

Yeah, the rise of the new subvariant highlights the public health challenges we’ve been talking about with COVID, you know, trying to constantly keep up with this ever evolving virus, which is why other measures are so important, like masking, washing hands, social distancing, you know, when the need arises.

Zoe Rothblatt  10:33

Yeah, like, it’s so important to keep up with all those measures. It does seem like there’s enough overlap between these variants that the new booster will protect against EG.5, but I guess, like we said before, the motto, we’ll just have to wait and see how it plays out in the real world.

Steven Newmark  10:49

Yeah, absolutely. So what’s different now that the public health emergencies are over? Or at least a declaration of public health emergency is over in the United States?

Zoe Rothblatt  10:57

Yeah, it’s a good question. You know, resources to combat the virus are not the same like it was, it’s a big push to get resources, especially when it comes to testing. We don’t have the free tests through the government anymore. And major insurers also stopped paying for over the counter test once the requirement ended.

Steven Newmark  11:16

Yeah, you know, testing, of course, is important for both preventive and before a gathering, for example, or if you’re experiencing symptoms, to not go out into the world and spread the disease. But if you don’t have any more free tests, or if you’re very limited in the amount of tests you have, you’re less likely to do that.

Zoe Rothblatt  11:32

And you know, with hospital admissions going up, like we said, it’s more important to have testing available to like you said, stop this spread, but also try to reduce some of the stress on the healthcare system if we’re able to test proactively and reduce cases and reduce hospitalizations and keep the healthcare system running as it should. So what’s next? Like, what should we be on the lookout for in the next few months in the US?

Steven Newmark  11:57

Yeah, the COVID-19 modeling hub, which is comprised of eight academic teams across the United States just released their projections for the next two years. And they predict that hospitalizations and deaths will likely stay within last year’s range, which is unfortunate, because it means we should expect to lose about 55,000 to 450,000 Americans on depending on how things go due to COVID 19.

Zoe Rothblatt  12:22

Welll if that’s not a cautionary tale to get your vaccine, I’m not sure what it is.

Steven Newmark  12:26

Yeah. And speaking of vaccines, we’re waiting still for full vaccine eligibility decision from the CDC, which we anticipate will happen sometime in September. So stay tuned. And of course, we will report on that.

Zoe Rothblatt  12:39

Yeah, of course. Yeah, we’ll definitely report on that. And the bottom line is just COVID cases are increasing. Don’t be surprised to hear if people around you are getting infected. You know, it’s not a reason to freak out. We said it’s part of the Omicron lineage. It’s not as lethal or severe infection. So those are all pieces of good news.

Steven Newmark  12:59

Yeah.

Zoe Rothblatt  13:00

And we’ll just see where this leads us.

Steven Newmark  13:02

I think that sounds right. And I like what you said, don’t freak out. It’s going to happen, you know, cases are going to increase and it’s going to fluctuate, probably forever, but no, no reason to freak out.

Zoe Rothblatt  13:13

Okay, Steven, that brings us to the close of our show. What did you learn today?

Steven Newmark  13:17

Well I learned during our discussion about the new EG.5 variants. I frankly, was not that familiar with it prior to our prep work for this episode. So we’ll see where it goes. Hopefully, we’ll never hear of it again. But I learned what it is. And I also learned what a very under monitoring is, the designation by the WHO.

Zoe Rothblatt  13:34

And from you that last point about the COVID modeling hub and just hearing about how, you know, we’ve gotten better projections for the next two years, as opposed to where we’ve been in the past with projecting COVID cases.

Steven Newmark  13:48

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 [email protected]/listen.

Zoe Rothblatt  13:58

And don’t forget to email us at [email protected]. If you have any questions, comments, or episode topics. 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 and write a review on Apple podcasts and definitely hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  14:20

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  00:18

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

Today, we’re going to talk about the heatwave and its impact on public health and what it means for you as someone living with chronic disease. But first we do you have a few news updates.

Steven Newmark  00:38

Let’s start with some long COVID trials, the National Institutes of Health, the NIH is launching clinical trials to test for four possible treatments for long COVID, including administering the antiviral Paxlovid over a longer course than is used for treating new infections.

Zoe Rothblatt  00:54

This is really cool.

Steven Newmark  00:55

Definitely.

Zoe Rothblatt  00:56

I know, we’ve had a lot of discussion around long COVID and its impact but I haven’t seen much about what’s happening with treatment. So I’m excited that as we go into the fall where typically we can expect a COVID surge that this is now being researched.

Steven Newmark  01:09

For sure, yeah, this is good stuff. And it’s something we hear a lot about from our community concern about long COVID. And sometimes we hear those with suffering from lung COVID or be ignored. But clearly that’s not the case from the standpoint of the NIH at least.

Zoe Rothblatt  01:23

And researchers are specifically testing potential treatments for associated cognitive issues, sleep issues and problems with the autonomic nervous system. And another trial still under development will focus on exercise intolerance and fatigue, and any additional trials will be announced on a rolling basis. So definitely like a wide variety of symptoms being addressed.

Steven Newmark  01:44

Yeah, absolutely. So that’s really good news. Other news, in these dog days of August, there is a surge unfortunately, of people losing Medicaid coverage, a decline in Medicaid coverage was expected at the end of the public health emergency, but health officials are raising concerns about the large numbers of people being dropped on the rolls for failing to return forms or follow simple procedures or I shouldn’t call them simple procedures. That’s not right, for failing to follow certain procedures, if you will.

Zoe Rothblatt  02:09

That’s right. And if you look at the numbers, so in 18 states that began a post pandemic review of their Medicaid rolls in April, health coverage was continued for about 1 million recipients and ended for about 715,000.

Steven Newmark  02:23

Yeah, of those four in five, so 80% were dropped for procedural reasons according to newly released data from the Centers for Medicare and Medicaid Services.

Zoe Rothblatt  02:33

That’s a lot.

Steven Newmark  02:33

Yeah.

Zoe Rothblatt  02:34

Especially over something that could maybe be avoided, especially like a lot of it had to do with mail because there wasn’t digital forms available for people to fill out and things were lost.

Steven Newmark  02:44

Excuse my crudity, but filling out forms sucks.

Zoe Rothblatt  02:47

Yeah.

Steven Newmark  02:48

And it’s easy to make a mistake when you fill out a form.

Zoe Rothblatt  02:50

That’s right.

Steven Newmark  02:51

Your health shouldn’t suffer as a result. And if you lose Medicaid, if you lose your insurance carrier, essentially, your health is likely to suffer.

Zoe Rothblatt  02:58

Definitely. And also, like I know, there’s guidelines about when you can re enroll in health insurance. I’m not exactly sure how it works for Medicaid. But hopefully these people don’t experience like too big of a drop in a lack of coverage.

Steven Newmark  03:11

Yeah, I agree wholeheartedly. And it’s why we raise it because we advocate for those who need us for sure.

Zoe Rothblatt  03:17

And the Secretary of the Health and Human Services did send a letter to all governors encouraging them to support efforts to retain people on Medicaid, also encouraging them to use electronic information for other federal programs, such as food stamps, so hopefully that’ll help confirm people’s eligibility for Medicaid and other programs.

Steven Newmark  03:36

Yeah, excellent. Hopefully, that happens. And we can report back some good news on our next program.

Zoe Rothblatt  03:40

Oh, my gosh, I hope so.

Steven Newmark  03:42

Alright, well, we said is the dog days of August, but starting in July, and actually probably started even earlier than that the US has faced record high temperatures and levels of heat exposure that have never been seen before. In our country. Just in the last few weeks, in July, more than 140 million people were under heat advisories in nearly three dozen states, from coast to coast.

Zoe Rothblatt  04:02

Yeah, in the Midwest temperatures are up to 20 degrees above normal. And similarly, in the northeast and mid Atlantic, there’s been dangerous heat waves as well. Actually, if you look back at just like how common heat waves were in the 1960s, Americans saw about two heat waves a year. And by the 2010s, over six per year, according to the EPA.

Steven Newmark  04:22

Yeah and I just want to take a pause to say why we’re talking about this. First of all, it is top of mind for a lot of folks, as we mentioned, the millions upon millions of Americans that are affected and as we’ll get into heat is a threat to public health. It impacts all of us it has a disproportionate impact, of course on the elderly, but you know, this is not particular cause celeb, like non medical switching or something that we’ve spoken about before it’s still important to advocate to let folks know how these heat waves are affecting you.

Zoe Rothblatt  04:49

For sure. And just aside from general advocacy, also self advocacy, like you mentioned, we’ll talk about some of the personal health risks but it’s really important as an individual just generally, but especially someone who lives with chronic disease to know your risk and talk to your doctor, so you could have a prepared plan. You know, you mentioned this isn’t advocacy like non medical switching, this also isn’t a virus in the way COVID is, but it’s still something that impacts your health on a day to day basis in this season.

Steven Newmark  05:16

Right. And also, let’s not forget, there’s a cost angle to this too, it’s expensive to run your air conditioner and we know that having a chronic illness can also be expensive. So to add another cost layer to this and depending on your job situation, you know, there may be lost productivity to deal with for yourself or for your loved ones. So there are other attendant costs associated with these heat waves.

Zoe Rothblatt  05:38

For sure, there’s a lot at play here so I’m glad we’re gonna talk about it together. And let’s dive into some of the health impacts. So the obvious one heat stroke is one of the most common and deadly heat related illnesses and obviously becomes more significant during heat waves. And then what’s really interesting here is that heat deaths and illnesses are totally preventable, but extreme heat is the number one weather related killer in the US.

Steven Newmark  06:03

Yeah, the past few decades have seen a 54% increase in heat related mortality among people 65 and older.

Zoe Rothblatt  06:10

So yeah, you hit that that’s one group that’s at risk, 65 and older. Similarly, the very young people with underlying health conditions, those who are overweight and those who are on certain medications. I mean, we talk about these groups a lot. They’re at risk for other illnesses, and it’s no surprise that they would be at risk here.

Steven Newmark  06:28

Yeah, and there are other ways that heat impacts your health. Air pollution gets worse as rising temperatures increase the rate of formation of hazards like ozone, such pollutants in turn exasperate heart and lung problems. The rise in nighttime temperatures is particularly worrisome for public health. Without much overnight cooling people living through a heatwave experienced higher cumulative heat stress, increasing risks of problems like dehydration and disrupting sleep, which can further worsen exhaustion and stress from high temperatures.

Zoe Rothblatt  06:54

You know, it’s really interesting when I was reading up on this before recording, I saw that experts say there is no absolute temperature at which he can turn dangerous, it really depends on the individual and how acclimated they are to heat.

Steven Newmark  07:07

Yeah.

Zoe Rothblatt  07:07

So this is often why heat waves earlier in the season or in places you don’t typically expect them to happen can have greater public health impacts, because either people themselves aren’t acclimated to the heat, or there’s not enough cooling infrastructures in place.

Steven Newmark  07:22

Oh, interesting. Yeah, I guess that makes total sense. I mean, if you’re someone that lives in a particularly warm climate, and it raises a few degrees, it’s very different than if you’re in a place that has changing climates and you go suddenly from 60s 70s. And all of a sudden shooting up through the hundreds that can be yeah, that can be quite troubling to say the least.

Zoe Rothblatt  07:39

Yeah, because your body’s built in defense, right sweat, you know, that system is used to work and used to operating and I guess it takes like a little bit longer for your body to catch up if you’re not acclimated.

Steven Newmark  07:50

Another issue with heat waves is that they can exasperate social inequalities while cities can warm up faster than their surroundings, poor neighborhoods, which are disproportionately home to people of color tend to get hotter, these neighborhoods often have less tree cover and green spaces, more paved surfaces that soak up the heat. And at the same time, lower income residents may have a hard time affording crucial air conditioning and cooling units.

Zoe Rothblatt  08:11

That’s right. And this same pattern of heat inequality plays out on an international scale too, with lower income countries already facing higher health and economic costs from heat waves as well. So it’s really important advocacy as you and you think about you know, where you can raise your voice, you know, where you live shouldn’t affect your ability to cool and good health when it’s hot out.

Steven Newmark  08:32

Yeah, absolutely. So just, I guess some non medical advice, if you will, from non doctors. A few things to keep in mind, heatstroke is not an actual stroke, it’s when the body quickly overheats, and can no longer use its usual tricks like sweat, as you mentioned, to call itself down, providers need to call the person quickly, ideally, within the first half hour of symptoms.

Zoe Rothblatt  08:52

And there’s a problem here is that there’s no actual like alert system in the emergency room like there is for a standard stroke. So ER staffers are often left scrambling. And heatstroke can also present in a way that looks like symptoms, like other illnesses that bring people into the ER.

Steven Newmark  09:08

Right.

Zoe Rothblatt  09:08

So there isn’t like always a rapid response around huge stroke, which is really critical, because like you said, you want to cool down the person within the first half hour.

Steven Newmark  09:17

Right. And this is something that emergency rooms are starting to incorporate climate into their thinking and adopt the medical system to have programs in place to help patients with climate related illnesses such as this.

Zoe Rothblatt  09:28

For sure and thinking about just like what else can be done as a public health person, I would say improve public health outreach and provide more cooling resources and education, particularly in those vulnerable neighborhoods that you just mentioned, where we could reduce some of the worst effects on people.

Steven Newmark  09:43

Yeah, absolutely. You know, I’ll just say it’s frustrating that we even have to take an episode to talk about the weather, if you will, but it truly is a public health hazard. And it’s something that is international and for quite a number of years, we could look at heat and say that that’s something that happens elsewhere, but It’s here, it’s in the United States, it affects all of us. Earlier this summer, we spoke about the Canadian wildfires. And even if you’re as far north as Canada, you’re being impacted by the changes in our environment. So there is a health angle, and we want everyone to be as safe and healthy as possible.

Zoe Rothblatt  10:15

And we’re still getting a lot of those air quality alerts. Most days here in New York, I noticed that it’s elevated. And that coupled with the heat, I don’t have respiratory issues, but it certainly does make it harder to breathe outside.

Steven Newmark  10:28

I know.

Zoe Rothblatt  10:28

Yeah it’s not just like something that’s on the news. It’s really something being felt on the individual level.

Steven Newmark  10:33

I know we need to dig a bunker and go live there, it’s our only chances, it’s our only chance, Zoe.

Zoe Rothblatt  10:38

As long as we can bring the dogs with us. Mac, you’re ready to go?

Steven Newmark  10:42

Yes, we’ll have a dog friendly bunker. Well, anyway, again, I wish we didn’t have to have an episode like this. But it’s happening, it’s on top of mind and you know, it’s something we’ll stay on top of.

Zoe Rothblatt  10:52

Yeah. And don’t forget to talk to your doctors about your health and your medication risk and what the heat means for you. Because it’s always a good idea to have those conversations ahead of time.

Steven Newmark  11:03

Yeah, absolutely.

Zoe Rothblatt  11:06

Okay, Steven, that brings us to the close of our show. What do you learn today?

Steven Newmark  11:09

You know, I learned from you just a few moments ago, how it’s less about the actual temperature and more about the change in temperature that affects a heat stroke. So I thought that was interesting. Thank you for sharing that, Zoe

Zoe Rothblatt  11:19

And I learned from you just highlighting some of the inequalities in our society and how he can have a major impact on certain vulnerable groups.

Steven Newmark  11:30

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  11:39

And if you have any questions, comments or topic ideas, don’t forget to 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 and write a review on Apple podcasts and definitely subscribe wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  12:00

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

Narrator  12:06

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