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.

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 I’m joined by Healthcare Matters co host Conner Mertens, who so generously offered to step in for Steven and co host with me this week. Hey Conner, how are you doing?

Conner Mertens  00:35

Hey Zoe, good to be here. Thanks for having me and another fellow alumni of Breaking Down Biosimilars.

Zoe Rothblatt  00:41

Oh, yeah, we do have a podcast together. We’re pros at this. So we’re gonna dive into some news and then do a policy landscape. You know, we’re halfway through 2023. Let’s see where we’re at around the states and federally.

Conner Mertens  00:54

Let’s do it.

Zoe Rothblatt  00:56

Our first bit of news is that an RSV shot was approved for infants. So Conner what’s interesting here is that it’s not a vaccine. It’s a shot that protects infants and vulnerable toddlers against RSV. It’s a preventative shot similar to how in COVID our community who is immunocompromised was able to get Evusheld as a preventative measure. This too is a monoclonal antibody that will act as a preventative for RSV.

Conner Mertens  01:21

This is great. I just had a neice a year and a half ago because right around fall and November and during COVID. So we didn’t have to just worry about COVID, we were also worried about RSV. So this kind of hits home for us and definitely my family. I think this is a great advancement. I heard that the FDA is also considering approval of RSV vaccine by Pfizer for pregnant women, which means they’ll have that protection when infants are born from the virus.

Zoe Rothblatt  01:45

That’s right. And yeah, the efforts have been focused around vulnerable groups. So in recent months, FDA also approved two vaccines against RSV for adults 60 and older. There’s been no word yet for immunocompromised but we’ll of course keep an eye and ear out for our community as we get updates, but it’s good to see that those who were affected last season are hopefully gonna get protection going into this season. Moving on to our next bit of news, the White House launched a permanent pandemic office. The name of the office is the Office of Pandemic Preparedness and Sesponse Policy.

Conner Mertens  02:18

That’s a mouthful.

Zoe Rothblatt  02:19

For sure. We love acronyms, it is O.P.P.R. So President Biden has chosen Dr. Paul Friedrichs to head to a new White House Office created by Congress to prepare for managed biological threats. This appointment will take place on August 7, and then it’ll be up to him to set up the new office. So we’ll wait to hear more there.

Conner Mertens  02:39

Yeah and this appointment really signals a more permanent and coordinated effort to prepare for and respond to pandemics. As you know, something happened recently. I can’t really put my finger on it, but it’s clear that we need to have better responses to these looming pandemics.

Zoe Rothblatt  02:53

Oh, you mean the COVID-19 global pandemic?

Conner Mertens  02:56

Oh, that’s right. That’s the one. Okay.

Zoe Rothblatt  02:58

So yeah, hopefully this will bring a more coordinated effort. When you think about what is the job entail? So it gives the authority to oversee domestic biosecurity preparedness, they’ll need to work on the development of next generation vaccines, ensure adequate supplies in stockpile and ramp up surveillance and monitoring of biological threats. Also a key component to this which Steven and I have talked a lot about getting funding for pandemic preparedness. And this in this role he’ll have to work with Congress in order to get funding for preparedness efforts.

Conner Mertens  03:31

That’s great. I mean, all these things are certainly, as we saw recently, very important for ensuring public health, that strategic national stockpile and surveillance up and coming in new biological threats is imperative to making sure that we have a healthy future.

Zoe Rothblatt  03:46

This next bit of news, actually, I’m so curious for your thoughts, because I know you’ve been a big advocate for mental health. So President Biden recently announced that his administration is moving forward with new rules meant to push insurance companies to increase their coverage of mental health treatments. Basically, the Mental Health Parity and Addiction Equity Act requires that health insurance cover the same level for both mental and physical health care, and they’re gonna look to see whether this is actually happening. And if it’s not make necessary adjustments to make sure mental health is covered.

Conner Mertens  04:19

I think this is so forward thinking and long overdue, we should treat mental and physical health the same and we should provide the coverage and the care for both of those that every patient needs. So this is it’s a really exciting step in the right direction. I actually ended up watching Biden’s announcement of this when it was on TV, and it was definitely something that I think a lot of people can look forward to.

Zoe Rothblatt  04:39

For sure, especially when you live with a chronic disease, it’s so intertwined with your mental health and caring for your mental health is just so important because the symptoms really do overlap and impact each other and we know how expensive health care is right? You and Robert talk about this a lot on your podcast, and it’s so important to have access through health insurance to know that you can get care at an affordable rate. And finally, for our last bit of news, we have our latest quick poll results. So Conner, you know about these quick polls, we send them out to our community to learn their thoughts on various topics most often having to do with COVID. But this time about our HEROES program. And for those of you don’t know about our HEROES program, it’s about you know, reaching patients where they’re at through their salon and stylists and you can go a few episodes back and hear Seth Ginsberg talk about the hero’s program and everything you need to know about it there. But okay, so let’s get into the results.

Conner Mertens  05:36

Let’s do it.

Zoe Rothblatt  05:36

A key takeaway that we learned is that 56% of respondents reported that they feel their stylist is educated in skin and scalp conditions “never” or “very few times.”

Conner Mertens  05:46

Yeah, I mean, that’s such an important statistic. I think when we talk about hairdressers, and stylists, and folks that work in the beauty industry, they’re kind of often on the front lines of seeing these skin conditions, maybe even before a very clients see them. So I think it’s very important that this HEROES program exists as this quick poll shows.

Zoe Rothblatt  06:03

And you got it perfectly led me into the next point is that 78% of participants reported that a program like our HEROES program would be helpful in their community. So it’s great to get that feedback as we launch this program and figure out what exactly patients need in order to feel comfortable in their everyday life with their stylist and getting the care that they need from their doctor as well.

Conner Mertens  06:27

Well, you know, so we actually took this HEROES program to the International Beauty Show in Vegas recently, and were able to meet with a lot of stylists and hairdressers. And they were so receptive. And it was really validating to hear that they, you know, care about their clients so much that they want to invest in this program and have more tools to be able to help them. It’s a really cool program. That’s, I think, going to help a lot of people.

Zoe Rothblatt  06:49

I agree. And Conner, also just transitioning into our big topic for today about health policy. I know you went on a little advocacy road trip, so maybe we could start there and hear about what you’ve been working on in the West Coast. And just the impact of bringing patients to state capitals and what you’ve been hearing from the stakeholders as well.

Conner Mertens  07:09

Yeah, we had a great West Coast advocacy road trip, my colleague and I, Corey Greenblatt jumped in the car and visited Olympia, Washington, Salem, Oregon, and Sacramento, California to meet with lawmakers and stakeholders and bring the patient perspective to those tables. You know, obviously all the same discussions about copay accumulator adjustors, and transparency. And you know, the things that we’ve been fighting for so long, but it really is powerful when you get to walk into a lawmakers office with a patient who has a very personal story, and that the laws that these folks are passing can really impact their lives. And to hear from those lawmakers that it’s the first time they’ve spoken directly to a patient about how these bills that they’re working on will change their day to day. So it’s a wonderful thing that we get to see firsthand. And it’s also just really powerful when we’re trying to make that change in the legislature.

Zoe Rothblatt  07:57

For sure. And what’s really remarkable to think about what you just said that it’s the first time they heard from patients, it really just underscores for me the importance of our 50-State Network, what we do and the power in the patient voice to come to the table and share a story that’s not always so easy to share.

Conner Mertens  08:14

Yeah. And I guess that begs the next question is, if this is the first time that they’re seeing patients who and what are the interests of all the other folks that are coming into their office to lobby for or against these bills. So I think it to reiterate your point, our 50-State Network and ensuring that patients have a seat at this table is so essential.

Zoe Rothblatt  08:32

For sure. Because at the end of the day, you know, the patient is at the heart of health care. And it’s a very important seat at the table.

Conner Mertens  08:39

Yeah, well, they better be or else we’ll have some words.

Zoe Rothblatt  08:42

Haha so true. Well, okay, so thinking about some other states moving across the country, most state legislations are out of session right now. So that means they’re not able to pass legislation or only may be able to pass very specific issues related to special sessions. But we are active in many of the states still open. California has taken our accumulator bill off the table this year, but it’s still being considered for next year. So if you’re a listener, and you have a story in California about copay accumulator, we’d love to get to know you and see how we can raise your voice. So definitely write in to us, you can email us at [email protected]. Conner, we’re also supporting a lot of bills in Massachusetts, so I think our colleagues are actually there right now as we record setting up meetings with stakeholders. Similarly, there is accumulator bill and we’re also supporting a non medical switching ban and other reforms to the PBM pharmacy benefit manager industry. So there’s a lot going on in Massachusetts, they’re really trying to lead the way.

Conner Mertens  09:38

Yeah, no, you said it, Massachusetts has a lot of really good legislation in the works that can really help patients and bring down costs and achieve the goal that we’re always trying to achieve which is making health care better and more accessible for folks living with chronic disease. Shout out Massachusetts.

Zoe Rothblatt  09:53

Shout out! And there’s a lot of momentum across the country, Michigan, Ohio, Wisconsin all have active accumulator bans that we’re supporting as well as Pennsylvania, in addition to a non medical switching ban. So, you know, keeping busy in our advocacy despite fewer active states.

Conner Mertens  10:10

Yeah, Zoe you know, we’re always staying busy on the state level, but with a watchful eye on the federal level as well, lots and lots of bills there that we’ve been keeping our eye on and lobbying for the last couple of years.

Zoe Rothblatt  10:21

Yeah, actually, there’s two big ones we could talk about here the Safe Step Act, which helps reduce step therapy happening to patients when you have to try and fail a drug before you can get the one prescribed by your doctor. So the Safe Step Act was brought up as an amendment recently in the House hearing to be added to a larger healthcare bill. And while this amendment was withdrawn, the chair the committee promised to give this issue more consideration and agreed it’s something to be reformed. And on the Senate side, there’s a procedural vote scheduled later this month that will possibly allow it to be included in the PBM reform bill that the Senate is putting together. You know, this is the first time the Safe Step Act has gotten a vote of any kind so it’s really a big deal, because we’ve been advocating, as you said, for years, and it kind of just shows that our hard work pays off. And movement can be slow, especially federally, but it’s important to keep up because now you know, we’re seeing that there’s potential for this to get passed.

Conner Mertens  11:16

Yeah, we love to see this movement. And it’s a testament to the tireless efforts of patient advocates like yourself, and the folks that join us to share their stories and share how these practices of non medical switching and step therapy, how negatively they can impact folks care.

Zoe Rothblatt  11:33

And the other big bill federally that we’ve been watching is the HELP Copays Act, and there hasn’t been much movement, which is it’s not surprising. It’s, I would say about three to five years behind the Safe Step Act from an advocacy perspective. So again, it’s just you know, continuing to raise our voice, the voice of our community, share patient stories and keep the momentum up. And hopefully in in a few years time it can get to the place where the Safe Step Act is now.

Conner Mertens  12:01

Yeah, Zoe that’s that is a thorough review of where we’re at about halfway through the year, you know, we’re obviously gonna keep an eye on things and keep advocating for all those folks at home. And we’ll see how the rest of the year shakes out. But some really good things in the pipeline that can again positively impact patients lives. So let’s cross our fingers and make our voices heard, huh?

Zoe Rothblatt  12:20

Love it. On that note, that brings us to the close of our show, Conner, what did you learn today?

Conner Mertens  12:25

I learned that y’all have a good time on the show and cover a lot of really important topics. It’s a fun little podcast. I’m happy to be here.

Zoe Rothblatt  12:31

Thanks and we’re so happy to have you aboard today really appreciate you filling in. And also, I learned from you about your recent road trip and just a reminder of how important it is to bring the patient voice to legislators. So thanks for all that you do, Conner.

Conner Mertens  12:45

Yeah, of course. And if your listeners feel so inclined, they should definitely go and check out another really good podcast I’ve heard of called Healthcare Matters. It’s hosted by Dr. Robert Popovian and Conner Mertens, we dive deeper into healthcare economics and policy. So we’d love to see some of your listeners over there.

Zoe Rothblatt  13:02

Definitely. We’ve actually had a back to back week of you and Robert here on Health Advocates. So we’re huge fans, some may say.

Conner Mertens  13:09

Yeah, it’s an elaborate plan to take over your show, so.

Zoe Rothblatt  13:14

Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, please give us a rating and write a review on Apple podcasts and check us out on YouTube. I’m Zoe Rothblatt. We’ll see you next time.

Narrator  13:33

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

Narrator  00:00

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

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. Yes, you heard that right. It’s me, Zoe Rothblatt, Associate Director of Community Outreach at GHLF. And today, instead of being joined with Steven, my usual co host, I’m joined with Robert Popovian. The host of Healthcare Matters. Robert is the Chief Science Policy Officer at GHLF. Robert and our colleagues have been working on this tool which looks into the laws passed across the US that have banned copay accumulators. We’ll hear today from Robert about these insurance practices, the findings and what it means for patients. Welcome, Robert, I’m excited to have you aboard today.

Dr. Robert Popovian  00:47

Thank you, Zoe. This is the first time I think I’m on your podcast. I’m very excited to be on. You know, we’ve hosted you couple of times on Healthcare Matters. So it’s two to one.

Zoe Rothblatt  00:57

I know and I had so much fun with you guys. So I promise I’m gonna make today fun in return.

Dr. Robert Popovian  01:03

Excellent.

Zoe Rothblatt  01:03

So okay, maybe some not fun things are some insurance terms. Can you start by breaking some of that down for us the differences between copay, coinsurance deductible maximum out of pocket costs, there’s a lot of terms flying around. I think it’ll help us frame our discussion today if we break it down.

Dr. Robert Popovian  01:21

Yeah, Zoe, that’s something I’m always asked, because when you’re in the healthcare field, like you and I and Ben our producer, we all assume we know all these terms that everybody knows these terms, right? So we move on and try to utilize these terminology without really understanding or appreciating that not everyone understands what we’re talking about. So what is a copay and copay is really, let’s start with that one, because that’s an easy one that’s copay is a set amount. So when you walk into a pharmacy or physician’s office, your set amount to pay for that office visit or for that prescription you pay that you walk out, you get your prescription, or you are seen by your healthcare professional. And you know that upfront when before you even go to pick up your drug or your visit with your healthcare professional or your provider, coinsurance is a little bit difference. It was introduced probably about 10 years ago into benefit designed for health insurance. And in that case, it’s a percentage of the cost of whether it’s the medicine or the office visits. So it’s a percentage. So it’s not a set amount. It depends on how much the charge is. And you pay a percentage of that as coinsurance. What is deductible? Deductible is something that all of us now almost all of us, actually I should say have in our benefit design. And it’s something that we need to pay off before we can even start utilizing our insurance benefit. And finally, maximum out of pocket costs is the maximum amount that you are exposed as a patient to pay for something before the insurance completely then covers 100% of the cost. So those are the terms typically used when we were talking about health insurance.

Zoe Rothblatt  02:58

That’s really helpful, thank you, and then diving into a little bit about what you’ve been looking at. So there are programs done by pharmaceutical companies that provide patient assistance to help pay these co pays. And I was wondering if you could explain to us like why you think that these companies have these programs?

Dr. Robert Popovian  03:16

So first and foremost, pharma companies do it because they believe you know that patients need to stay adherent to their therapies. As we’ve gone through many years of benefit design changes, patients on especially brand name medicines get significant exposure to out of pocket costs. And we know historically, when out of pocket costs reach a certain level for individual drug, patients stop taking it. Because of that reason, over the last maybe dozen years, pharmaceutical industry has introduced what they call patient assistance programs, or manufacturer assistance programs, also referred to, to help patients defray the costs of those out of pocket costs so they can stay on their therapy, and they can be adherent and benefit from those treatments.

Zoe Rothblatt  03:59

You know, it’s great to hear about the programs that are coming up to help patients afford their medications. But as these programs arise, there’s also programs arise that make it more difficult for patients to maybe afford other aspects of their care, like meeting their deductible. Can you talk about these programs known as accumulators and maximizers, and what the difference is between the two?

Dr. Robert Popovian  04:22

So accumulators and maximizers came about maybe about five years ago where insurers and pharmacy benefit management companies started to introduce these sorts of benefits schemes where if a patient got a patient assistance program from a manufacturer, they would not count that towards a patient’s deductible or maximum out of pocket costs. So in essence, they were leaving patients in perpetual phase of deductible, right? So they would never meet them as they would get those benefits from the manufacturers. The difference between accumulators and maximizes is that with the accumulators, uh, you know, you keep draining your patient assistance program, they never meet their deductible and then in like the third or fourth month, because you finished up all your patient assistance program, patient would get the surprise bill in middle of the year. All of the sudden, they were paying nothing, maybe the first two, three months of the year, they run out the available funds. And all of a sudden they get this surprise bill. What the maximizer did is to sort of say to the patient, okay, we’re going to maximize your patient assistance program. So they took the whole amount of the patient assistance program and divided over 12 months, so it sort of eliminated that surprise billing in the middle of the year. But just as the accumulators, none of the funds that are provided by pharma companies under the maximizer program applies to the deductible so the patient is still on perpetual deductible. And Zoe, as you well know, I mean, you’re a chronic disease patient. Chronic disease patients are not just paying for their medicines, they’re paying for office visits to see their healthcare professional on a regular basis. They may have lab work, they may have MRIs, CT scans, X rays, all these things that accumulate. And because they’re not meeting any of their deductibles, even though this for one, this one drug under the maximizer program, the patient is quote unquote, made whole, because of the lack of the funds applying to the deductible, they still have to pay and double pay for the deductible until they meet it out of their own pocket.

Zoe Rothblatt  06:15

Yeah, that’s right. And I mean, you said it, it’s chronic, the costs are chronic too. And they add up. And it’s like really a burden, when you’re thinking about just trying to make ends meet and all other aspects of your life to be strapped with these bills that, like you said, you’re paying double. And it’s just these programs that are making it impossible to reach. Are there alternative funding programs or organizations available to patients?

Dr. Robert Popovian  06:39

Yeah. So there are organizations actually working with the pharmacy benefit managers to sort of apply these to these programs. So one of them is Savon SP has gotten a lot of airtime in the last few months because of the litigation that’s been filed from the Johnson and Johnson against Savon SP and in that case, Savon SP is an organization that sort of works with the PBM, it requires that the patient has to sign up with them for them to be able to reutilize the patient manufacturer assistance program. But the difficulty with that one is that it’s getting even worse. So in some cases with these alternative funding programs, these organizations like the PBM, or even the Savon SP types, go to the employer and say, you know, employers only you don’t have to cover specialty pharmaceuticals for your patient population that you are covering through as employment benefits, what we’ll do at Savon SP go hunt for patient assistance program. In essence, if let’s say Ben, who is an employee of yours needs a specialty drug, technically, they will not have any coverage, well, what we’ll go do at Savon SP is look for these patient assistance program and pull it out and utilize that. But what happens if the company doesn’t have a patient assistance program or refuses to provide the patient assistance program, which a lot of them are doing if they find out they’re under to maximize a program or accumulated program or these alternative funding programs, you’re left with no coverage. And technically, that is what is happening with these alternative funding programs is that organizations like Savon SP are utilizing a loophole in the Affordable Care Act terminology about drugs and drug coverage and denying coverage of medicines specialty drugs to their employees. Now, a lot of folks believe this is illegal. And when you hear them pitch this idea to employers, Zoe, it’s interesting, every other word is that well, there’s some gray legality and gray area of legality issues here. And you need to check with your general counsel or your attorneys to make sure that this is kosher, this is going to be a problem. And this is a major problem. Because in essence, as a patient, if you’re under one of these alternative funding programs, like Savon SP types or maximize or Savon SP programs, you as a patient don’t have any coverage for specialty drugs, you’re depending on the patient assistance programs from these pharma companies.

Zoe Rothblatt  08:55

And like you said, those programs run out. So it’s like not feasible to just depend on those programs.

Dr. Robert Popovian  09:02

Yeah, I think the unfortunate part for all of this, and you alluded to it a little bit is that patients are double paying. So these patients this program get captured by the PBMs. And the insurers as profit, and the patient is almost like double billed, because not only they have to pay for their medicine, but they have to also pay for the deductible twice, even though the deductible you know, the Patient Assistance could have easily fulfilled that requirement. And it’s unfortunate because it’s all profit for the PBM. That’s going to go directly to the pockets of the PBMs and the insurers.

Zoe Rothblatt  09:33

I was gonna say how can they get away with this? But in some cases they’re not. I know that I briefly mentioned at the top that there are state laws that help protect patients, can you talk to us a little bit about these laws and how they help protect against these policies.

Dr. Robert Popovian  09:48

So you live in New York, Zoe?

Zoe Rothblatt  09:50

That’s right. Yes.

Dr. Robert Popovian  09:51

You are in one of the states that’s actually done the right thing, it’s protecting the patients. It’s prohibiting schemes like accumulators and maximizers to happen. So in the case of the state of New York, they required that any kind of assistance no matter where it came from, whether it came from manufacturer, or your uncle Charlie, has to be able to be applied to your deductible. So there are 18 other states similar to New York. So total of 19 states that have passed legislation, policymakers have passed legislation to protect patients, that’s really good. And to be honest with you, they’re both large and small states, there’s New York and Texas, two of the largest states in the country, have passed it. We also have states like Illinois, and Oklahoma and Louisiana who have done so as well. So more to come, hopefully in 20, the rest of 2023 and 2024, where state policymakers are stepping up and trying to protect patients. And you know, one of the things that you always get pushback from we try to address through our tool on the GHLF website. But one of the things I have to say is that the state legislation is not enough. And the reason it’s not enough is because state legislation really regulates state regulated health insurance. So if you’re fully insured person, yes, you will benefit from that. And I know Zoe you’re under one of those plans through Global Healthy Living Foundation. But if you’re in an ERISA plan, which is a self funded plan, these state laws do not protect you. So in essence, we need federal legislation to be able to capture everyone.

Zoe Rothblatt  11:17

And there is legislation at the federal level, The HELP Copays Act, which our 50-State Network has been really active in advocating for but it’s kind of like working backwards, the states should help fill in the gaps of the federal legislation. But it is good to hear about the momentum around the states and that, you know, nearly half of the states are passing these laws.

Dr. Robert Popovian  11:37

That’s right, and Cory Greenblatt that works with us, he does a great job of promoting that on behalf of Global Healthy Living Foundation with state and federal legislators.

Zoe Rothblatt  11:46

So talk to us about this tool and how it can help again, some of that pushback you’re talking about.

Dr. Robert Popovian  11:52

So the pushback really, from the insurers and the PBMs it’s the boogey man issue, right, so every time a policymaker or an advocacy group, or Corey, for example, brings this up as a solution to help patients out, one of the biggest lies that the insurers and PBMs tell people is that premiums are going to skyrocket. Just know that if you pass this legislation to help patients and protect patients, all of a sudden these premiums are going to go up. So last year, we decided to release a tool which is publicly available, it’s all public data, and it’s open to anyone that wants to go, whether it’s the insurer or the PBM, any patient advocacy group, policy makers, they can go in there, take a look at it. What we found is that last year that there was absolutely zero impact on premiums. That means passage of these laws and regulations in the states to protect patients had no impact on whether or not the premiums went up or went down. In fact, we have a really nice graph of the states that have passed it and the states that have not passed legislation yet to protect patients, and guess what premiums are identical and the up and down level is identical. It makes no difference. And so this year, we decided and this is why we’re talking about it again, is we rereleased it with newer data going back all the way, I think, to 2014, that we have information for premiums, and anybody can go again. And we updated it with now 19 states passing it again, nothing changed. In other words, the boogeyman is really a lie. It’s something that is brought up by the insurers and the PBMs constantly to scare policymakers from doing the right thing.

Zoe Rothblatt  13:20

And have you brought this to policymakers yet and gotten any feedback? I’m wondering what have been the perspectives from stakeholders when they hear that this boogeyman isn’t so buggy?

Dr. Robert Popovian  13:30

That’s a great question. So yeah, we know personally, I know that there are several legislative bodies have utilized the information to be able to introduce or pass laws, most recently, you know, one of our colleagues, JP was both in Texas and in Wisconsin advocating for utilizing this information to be able to advocate for it. But you know, since we introduced this tool last year, I think it was end of last year, like November or October of last year, over 2000 people have visited the site have taken a look at it. So our assumption is that people are using it, people are trying to utilize it to push back on the major the number one sort of complaint that the insurers and the PBMs have or have convinced employers and policymakers, which is this increasing premiums, which is absolutely not true, there’s no truth to it.

Zoe Rothblatt  14:16

That’s great to hear. And we’ll drop a link to the tool in the show notes. Because you know, our listeners, our patients and our network, you guys can all use this tool and bring it to your legislators, share it on social media and use it to help advocate for these laws because I’m sure I know I’m affected by this, if you live with a chronic condition, you most likely are too and we shouldn’t be paying double, we should be getting health care at an affordable rate.

Dr. Robert Popovian  14:41

And you should benefit 100% from the patient assistance, which is meant for patients not PBMs. The P stands for patients PAP not PBMs.

Zoe Rothblatt  14:49

That’s right. So Robert, are there other policy issues that are in play that can protect patients from other predatory schemes like this?

Dr. Robert Popovian  14:58

Yes, definitely one other thing that we’ve seen in the states that protects and sort of undercuts this whole accumulators and maximizers, besides passing these bands in the state level is anti steering laws, anti steering laws prohibit and Texas passed the first one, and it’s probably the most effective one, it prohibits pharmacy benefit management to mandate the patient has to go to a PBM owned pharmacy, so the patient can go to any specialty pharmacy to acquire their drug. And those are that’s important because one of the ways that PBMs and insurers sort of mobilize on these accumulators and maximizers is to mandate everybody to go to their PBM owned pharmacy. And this is another little secret that nobody knows not so much little anymore, because we’ve been talking about it. But specialty pharmacy where majority of these programs are impacted, right specialty drugs, almost 70% of specialty drugs in this country are dispensed through PBM, the three largest PBM owned pharmacy, so Optum, CVS Health and ESI dispense about 70% of specialty medicines in the United States. And that’s another problem with this market is that it’s so manipulated, and there’s so little competition or lack of competition that drives this type of behavior and makes it so successful PBMs. And insurers really to take advantage of patients.

Zoe Rothblatt  16:14

Yeah, I mean, it’s exactly that it is taking advantage of patients. And you know, that’s why our network is so important to bring patient voices to the table, because it really is about us at the end of the day, and us feeling good, and it is our everyday life. And I think that it’s hard to remember that these are real people with real symptoms, and that each law each, like little policy really does make a difference in someone’s life.

Dr. Robert Popovian  16:37

Without doubt. And you know, and I want to make sure that everybody knows and you talked about the link for tool because people need to be educated, the more educated we are, the better pushback we can give to these predatory type of schemes that take place and take advantage of patients and to the profit maximization of PBMs and insurers. And one other thing I know Ben is going to take care of this, but we are having a webinar on July 27.

Zoe Rothblatt  17:01

Right, right. Tell us about that.

Dr. Robert Popovian  17:03

Yeah, we have a webinar scheduled right now on July 27, from 12pm to 1pm Eastern Standard Time, it’s gonna be a live webinar, we’re going to discuss the tool we’re going to discuss we’re going to have JP on, you know, as a patient who has experienced accumulators and maximizers, herself as a patient to talk about her experience. And we’re going to record that webinar and we’re going to keep it alive on the site. For anybody who cannot attend. We want them to come on live and ask questions. But if you cannot, we will have it as something that you can go back and look at later on.

Zoe Rothblatt  17:33

Yeah, and we’ll put that link in the show notes as well. I definitely encourage all of our listeners to go, I’ll be there. And Robert, thanks for giving us the first scoop on The Health Advocates.

Dr. Robert Popovian  17:43

Absolutely. You guys get the first one. So we haven’t even done it in Healthcare Matters. So Ben, we gotta get cracking on that one.

Zoe Rothblatt  17:52

Well, thank you so much for joining us today. Congratulations on the launch of this tool. And I know it’s just going to help so many patients, it’s already making a difference, like you mentioned among stakeholders. So thanks for all that you do, Robert.

Dr. Robert Popovian  18:04

And thank you for having me. And we want to have you come back on and talk about some of your experiences as a patient but also as a policy expert. I know you work a lot on different therapeutic areas as a policy lead, and we would love to have you back on the Healthcare Matters podcast one of these days to talk about some of the work that you’re doing.

Zoe Rothblatt  18:21

Thank you. Well, it’s been a month of insurance battles. So I’m like ready to vent on Healthcare Matters any day.

Dr. Robert Popovian  18:29

Bring it on.

Zoe Rothblatt  18:32

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 don’t forget to check us out on YouTube. I’m Zoe Rothblatt. We’ll see you next time.

Narrator  18:51

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  00:29

Today, we’re going to talk about some recent malaria cases in the US and how it impacts public health. But first, we do have a few news updates.

Steven Newmark  00:38

Yeah, so first, some bad news. The drug shortage in our country is continuing a few episodes ago, we talked about the drug shortage and it is still an issue, especially for cancer drugs. Other drugs, like some antibiotics are also in short supply.

Zoe Rothblatt  00:52

And we talked about this being a result of the generic market with little incentive to invest in generics, also quality control in some facilities. Everyone could definitely check out that episode for more information. But I guess an important thing to highlight here is that a drug that many in our community use, methotrexate, is in shortage. So we had asked on social media if people are affected by the methotrexate shortage. 78% said no, 22% said yes. Obviously, it’s good to see that the majority are not affected but 22% is still people affected and anyone affected is you know, a life that’s being altered. Maybe someone’s in pain or can make it to work are just is really struggling through the day. So if you’ve been affected by the shortage, definitely let us know you could email us at [email protected]. We’re staying on top of the news and hope that everybody has access to their drugs.

Steven Newmark  01:43

Yeah. A spokesman from the FDA announced just a few days ago that the agency is bringing in cancer drugs from China, which by the way, in a funny way, speaks to our complicated relationship with China back and forth. So anyway, we will keep monitoring and keep updating as appropriate.

Zoe Rothblatt  01:59

Definitely. So next on our news list is about the pandemic preparedness bill. So the Pandemic and All Hazards Preparedness Act is a landmark bipartisan legislation that has successfully like steered our nation’s biosecurity policy ever since 2006. And it’s currently under reauthorization. It expires at the end of September of this year.

Steven Newmark  02:20

Yeah, if COVID has taught us anything, it is the importance of being prepared and strengthening public health responses in advance of a pandemic and that’s something we’ll talk about a little bit more later in the episode.

Zoe Rothblatt  02:31

So the House Energy and Commerce Committee held a hearing in June for this legislation, and it included various proposals. The Senate Health, Education, Labor, and Pensions Committee Chair Bernie Sanders and ranking member Bill Cassidy released a discussion draft including more changes in early July. So you know, there’s discussions happening, but there’s no final ruling yet.

Steven Newmark  02:54

We will continue to monitor and continue to advocate for its reauthorization, of course, and keep you updated. So moving on to our main topics for today, we want to talk about generally the importance of public health. And specifically, we’re going to talk about malaria, because for the first time in two decades, federal health officials have confirmed malaria infections in people who did not travel outside the United States, leading officials to warn about the potential transmission of the mosquito borne disease within our country.

Zoe Rothblatt  03:25

Yeah, this is surprising because malaria was declared endemic, right and it’s not been in the U.S. unless people travel outside. So what’s going on? Why is it appearing in the U.S. all of a sudden?

Steven Newmark  03:36

Yeah, let’s just say first and foremost, malaria is a huge issue when it comes to global health. And in fact, half of the world’s population, mostly in poorer, hotter countries are impacted by malaria. And it’s one of the leading causes of death in developing countries. But essentially, as our climate is changing, it’s bringing warmer weather further north, which means more mosquitoes traveling further north. So two things are happening when it comes to these mosquitoes that carry the disease. Number one, as I mentioned, is the migration. malaria mosquitoes are moving, you know, they’re already here but it’s not just malaria mosquitoes is other mosquitoes that aren’t native to the U.S. that are also moving further north. And we’ve seen other mosquito borne diseases over the last decade or so Dengue fever, Zika virus have started to show up in the U.S. and in Europe. And the second major issue is transmission. It’s easier for mosquitoes to transmit diseases in warmer climates so as temperatures rise, it’s easier for it to be transmitted.

Zoe Rothblatt  04:33

So given that migration and transmission, should we expect that we’re going to have a massive malaria outbreak here in the U.S.?

Steven Newmark  04:40

Not anytime soon, thankfully. You know, just to be clear, we’re not issuing a flashing red light warning to batten the hatches this week. But I think as we have this conversation, we’ll see the importance of for preparedness like we were talking about with the legislation upcoming in Congress and its issue. In terms of the specific outbreak or the specific cases, I won’t even call it an outbreak, teams in Florida and Texas are already spraying insecticides in the areas where cases were reported and were able to keep it under control. Years ago, I remember being active in public health when Zika came first appeared. And there was a response in terms of the insecticide spraying to keep it at bay. And we did, so the risk to the public today in the United States is very, very low. However, it could be the kind of thing that if we don’t take action, or if we ignore it, we may start to see something in the next 10 or 20 years.

Zoe Rothblatt  05:30

It’s like an ominous warning on the importance of public health. A lot of times those public health, it’s hard to see the victories in it because when public health is successful, you’re not seeing an outbreak, right, like nothing should be happening. So it’s like hard to imagine you in 10 to 20 years we could see this, we have to act now. But it’s really important to bolster public health response. But that’s obviously hard because as we know, we’ve been losing trust in public health.

Steven Newmark  05:55

Exactly. There are certainly things that we know that we can do to bolster public health when it comes to malaria and other another mosquito, we’ll call it mosquito borne viruses and other tropical diseases that may find their way north. But we can’t wait until it’s too late and like you said, it’s hard to prepare for invisible diseases. It’s so hard. I’ve worked in government and it’s hard to get funding for snowplows in the middle of summer, because you don’t see the problem. You don’t, nobody wants to spend money on something that they don’t see the problem for. And that’s just how it goes. And a lot of times, as you said, a successful eradication of a potential pandemic is not really praised very much, you know, going back to viruses like Zika, which, you know, never fully made its way here, Ebola, we were able to tamp that down, H1N1 flu, all the various flus that came from Asia over the last 15-20 years. And then of course, it was COVID, which shows what can happen, which can lead to a pandemic, and what we’re seeing is an increase in the number of viruses present in the human population around the world number one, and number two, an increase in travel, of course, people travel more than they’ve ever traveled. And that could combine to you know, cause a heart ache if we don’t do something.

Zoe Rothblatt  07:11

So how, how can we do this? We’ve been talking about combating misinformation, gathering public trust, like, yeah, I guess it’s important to highlight where in lies the issue and what could we do next in order to help bolster public health to show what a good functioning health program can be to eliminate risks like malaria?

Steven Newmark  07:30

Yeah, that’s a billion dollar question, maybe even a trillion dollar question, depending on how much these pandemics costs us worldwide. I’m speechless. I don’t know the answer. I think no, look, I think ultimately, it comes down to you know, public health is inherently political, it’s public, it’s in the word meeting, and requires buy in from the public from the people it needs to be, you need to have a bi directional conversation with the public, you can’t put people down who are anti public health, if you will, if somebody is opposed to vaccines, or has interesting, shall we say, ideas about sources of viruses, or is disbelieving in viruses. I think you have to treat each person as an individual and try to have those conversations. And I think the ultimate thing to ask is, you know, somebody once asked me, how do you convince someone that they have their facts wrong? And I don’t have an answer for that, other than to say, what would it take for you to be convinced otherwise? And if they don’t have a proper answer for that, then I know that they’re not being intellectually honest. And I wouldn’t bother expending my time and energy trying to engage that person. But if they do say, look, I could be convinced if I only knew this, this, this and this, then at least we could start, that’s where the dialogue begins. And it’s almost a one on one. And I think, you know, overarching, I think perhaps it means training our public health officials to be better communicators.

Zoe Rothblatt  08:52

Yeah. I mean, we talk about this a lot in our community for people with chronic disease and right, you know, just expressing your risk and what makes you comfortable, and especially in COVID, talking about how the vaccine is important for you and for those around you to be vaccinated because it helps protect you. And I think you’re right, it like has to do a lot of conversation and communication and just learning over time about these issues.

Steven Newmark  09:17

Yeah, exactly. I think some of it just in talking out loud. When you hear leaders talk down about public health, that obviously has a dispiriting quality to it, when you hear leaders talk positively about public health it has a reverse opinion, and I think what we do at GHLF, we bring people to meet with policymakers, elected officials and tell their stories. And in so doing, it makes it more difficult for leaders to speak negatively about public health. It gives leaders a lens of sympathy, in some cases, empathy to make it simpler for these leaders to take a positive stance when it comes to public health, which sort of has a trickle down effect, if you will, and to the public at large. So I think it’s getting buy in from nonpublic health folks in leadership positions, for sure. And I think we do that here at GHLF. I think a lot of our listeners are folks who have joined us in meeting with these policymakers. And that’s a big deal. And we have to just keep doing that. And when it comes to the science side of things, perhaps part of it is becoming better communicators, and figuring out a way to speak to the public at large in a better way. But of course, it’s difficult, because we’re all so siloed in our different worlds of where we get our information.

Zoe Rothblatt  10:31

Right.

Steven Newmark  10:31

And I’ll just add on a federal judge in Louisiana on July 4 of all days, July 4, issued a ruling restricting government administrators from communicating with social media platforms about broad swaths of content online. And, you know, a lot of folks have said that this ruling was really aimed at the Biden administration, particularly the health and science folks communicating with social media companies about misinformation on their websites. This is not about the case, it’s not about the Biden administration, or any administration stopping the publication of such information, it was more about just engaging the dialogue like, hey, just so you know, there’s so and so is publishing false information, and they have a lot of followers, it’s something you may want to be flagging. And there’s a whole host of First Amendment issues that we’re not going to get into here. But it certainly will make it more difficult for public health folks in government to communicate with the social media companies. And as I said, we live in our silos and if your silo is such that you’re getting a feed of misinformation constantly, it is hard to combat that.

Zoe Rothblatt  11:36

So is that restriction staying in place? Or is someone arguing against it?

Steven Newmark  11:41

So the government actually very quickly filed an appeal to the Fifth Circuit Court of Appeals, and we’ll see where that leads. You know, like I said, it’s more complicated than we’re able to get into on this podcast. But it should be known as the kind of thing that has implications for public health. It’s and beyond public health, although there are hate groups, for example, that pop up online that spew certain information and collect followers and the FBI could go, at least prior to this ruling could go to social media companies and say, hey, there’s this group on on your feed that’s collecting 1000s upon 10s of 1000s upon 10s, of 1000s of followers, and we think it’s something you should take a look at, or there’s a certain group that’s spreading misinformation. And we have reason to believe it’s it’s actually a foreign actor who is publishing this information to discord in our country, something you should take a look at. So it goes beyond public health, just to be clear, but yeah, it makes it harder when we continue to be siloed.

Zoe Rothblatt  12:35

Definitely. Well, you know what I was also thinking, we’ve talked in our news updates before how there’s going to be a new CDC director, and there’s reorganization within the CDC. So I wonder how also that will play into public trust and communication amongst our leaders as well.

Steven Newmark  12:50

Yeah, for sure. It’s interesting, there’s a lot of articles in my feed my social media feeding, because we all have our silos. And I’m seeing a fair amount of articles about the pandemic, looking back from journalists that I like, who are talking about what I got, right and what I got wrong in the last three and a half years. And it’s kind of interesting, because I think for the most part, most of what was said wasn’t wrong, it was working within a very difficult circumstances to try and pass along the best information possible. And there was no way you could have gotten everything perfectly right. That would have been, that would have been Zika. That would have been Ebola. That would have been one of the other crises that we mentioned that never materialized. So it was a difficult situation. And and I think latching on to mistakes that you made doesn’t make it bad. I mean, look, I love sports, right? You could watch the Super Bowl, the Super Bowl winning team and the day after, you could have a video showing all the mistakes that the winner of the Super Bowl made and if you only focused on like, oh my god, they had that fumble, oh, my god they had that run play, you know, they lost the yard and that run play that when you’re in the heat of the moment, nobody executes perfectly. It’s a near impossibility, particularly with something that had never happened before. And I hope that going forward, the judgment is fair, you know, judging by the circumstances, not with 2020 hindsight.

Zoe Rothblatt  14:12

So what can people in our community do, I would say, call your elected officials and talk about the importance of public health and that you would want them to support any, like pro public health legislation that arises.

Steven Newmark  14:25

Right, right. I mean, I think it’s everything that we continue to talk about it, talk one on one with your own family members, one on one with people in your community, talk on a larger scale with local public officials talk on an even larger scale. Join us when we make our trips to state capitals into Washington and express our views and make sure your voice is heard. And that’s really what it’s all about. And it’s not about you know, I certainly don’t think it’s helpful to engage, as I said, in ad hominem attacks against people who have different views. It’s certainly not helpful to just dismiss and yell and scream that really doesn’t help, you can try to engage in a dialogue one on one that’s can be difficult but as needed, it’s those dialogues and just continuing to spew what I would call the proper information and when it comes to public health and its importance, and hopefully will continue to be a loud voice.

Zoe Rothblatt  15:16

Well, that’s a great message to end on. Thank you, Steven. What did you learn today?

Steven Newmark  15:20

You know, I learned in the course of our discussion, just how important public health is and how difficult it is to actually come up with a response on how to increase the public’s exposure to public health and its positive aspects on society.

Zoe Rothblatt  15:34

Definitely. And I learned from you just about the responses we’ve had in the past to different public health threats.

Steven Newmark  15:43

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  15:52

And don’t forget to email us at [email protected]. If you have any questions, comments, topics you want us to dive into. Well, 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 definitely hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  16:14

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

Narrator  16:20

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

Narrator  00:00

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

Steven Newmark  00:08

Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, 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 what’s going on with the recent FDA meeting about vaccines, along with news updates on new CDC leadership and also the disenrollment from Medicaid.

Steven Newmark  00:39

All right, well, let’s get into it. As you just mentioned, there’s a new director at the CDC. President Biden announced plans to appoint Dr. Mandy Cohen, the former North Carolina Health Secretary as the next Director of the CDC.

Zoe Rothblatt  00:52

And Dr. Cohen will take over for Dr. Rochelle Walensky. This appointment actually does not require Senate confirmation, meaning Dr. Cohen can just go into the role as soon as Dr. Walensky steps down, although Congress did recently passed legislation requiring the agency’s director to be confirmed but this won’t take effect until 2025.

Steven Newmark  01:14

Dr. Cohen will oversee the CDC’s recently revised efforts to track the Coronavirus including in wastewater, she will also be responsible for a vast set of public health crises handled across the agency’s centers, including other infectious disease outbreaks and opioid misuse.

Zoe Rothblatt  01:29

And, Steven, we’ve talked about this on here and just amongst ourselves generally, how trust in the CDC has gone down over the pandemic. So I think it’ll be interesting to see how this leadership change impacts that trust. And there’s also an overhaul in the CDC, a reorganization of work to change positions, modernize data systems and improve CDC communication. So Dr. Cohen will also be in charge with overseeing this, so it’ll be interesting to see how, you know, public perception of the CDC changes with leadership.

Steven Newmark  02:00

Yeah, some other news, we’re learning that millions of people as predicted are getting disenrolled from Medicaid. This is a result of post public health emergency procedures.

Zoe Rothblatt  02:12

And the Biden administration actually asked states to slow the removal of beneficiaries from their Medicaid because we’ve seen so many lose coverage so quickly.

Steven Newmark  02:21

Yeah, more than a million Americans have lost coverage since pandemic protections ended in April. And this is mostly we’re just highlighting this as an issue and reminder to double check your insurance.

Zoe Rothblatt  02:31

And lastly, on our news updates, we have the results of our quick poll on COVID. So as a reminder, these are polls that are sent out to our COVID-19 Patient Support Program. And this was kind of to see where people are at with COVID protections and their experience with COVID generally. So let’s get into the results. We found that about half have gotten COVID and half have not I found that really interesting because when I…

Steven Newmark  02:56

Half have gotten COVID since 2020?

Zoe Rothblatt  02:58

Mhm.

Steven Newmark  02:59

Wow, it’s pretty low.

Zoe Rothblatt  03:00

Yeah, because when I think about your my circles, I don’t think I know anyone personally that hasn’t gotten COVID yet.

Steven Newmark  03:08

Yeah, I thought the numbers across the United States were in the 80s and 90s but okay.

Zoe Rothblatt  03:13

Well, this may help explain some of that, because we also asked about masking and generally it seems like people are masking indoors over half said, around 60% said they mask in an indoor public space, 60% said they mask in public transportation, about 50% at an indoor event. Versus the outdoor masking was around 15%. So you know, that probably contributes to the fact that yeah, only half have gotten COVID.

Steven Newmark  03:41

Yeah, for sure. I suspect that the rates of masking are much higher than in the general population at large, which is a testament I guess.

Zoe Rothblatt  03:48

Let’s jump into our main topic for today. The recent committee meeting for the FDA, it’s called the V R B P A C, VRBPAC, which stands for Vaccines and Related Biological Products Advisory Committee. That’s a mouthful, but you know, we’ll dive into all that was discussed.

Steven Newmark  04:07

Yeah, so they met on June 15. And by way of background, the role of VRBPAC is to provide non binding recommendations for consideration by the FDA, with a final decision on approval to be made by the FDA and the FDA uses advisory committees generally to number one, get advice from experts who work outside the agency. Number two, work towards transparent and open government and number three to encourage patients, healthcare providers and other interested people to share their views during open public hearings or by submitting comments to their docket.

Zoe Rothblatt  04:36

And the committee’s discussions are just designed to help ensure that the public is clear about the FDA’s expectations for data to support the safety and effectiveness of products so that you know the public can be confident that the required regulatory standards will be met for you know all products.

Steven Newmark  04:53

So this meeting was on COVID-19 vaccines going forward. And so let’s get into it some of the takeaways. So, you know, why are we updating the COVID-19 vaccines? Well, we could keep the same formula this fall but there are several reasons that were presented, why we should update and they are. Number one, COVID continues to mutate quickly, now two times faster than the flu. It’s normal to update vaccines when the virus mutates quickly. For example, we update the flu sort of every year and we don’t update vaccines for the measles, which hasn’t mutated in a meaningful way for many decades.

Zoe Rothblatt  05:27

Yeah, that’s so interesting, two times faster than the flu just to you know, to compare it to something seasonally. What were some of the other reasons?

Steven Newmark  05:35

Well the current Omicron variant known as XBB is circulating meaningfully different, that’s their quote, meaningfully different, than other Omicron variants and presentations indicated that an updated vaccine with XBB would help our immune systems recognize the change. And finally, COVID-19 vaccines are waning in protection. This is happening faster when we are exposed to XBB virus compared to other Omicron variants. Oh, and I should mention too, I guess is the recommendation was to go from a bivalent back to a monovalent agai. If you recall, the original vaccine was a monovalent that means it was targeted towards one variant, which was the original Wuhan variant. Then in 2022, the vaccine formula was updated to buy bivlaent, which was targeting two variants, the original variant as well as the Omicron ba.4 5 variant. Now the FDA wants to go back to monovalent, targeting only Omicron XBB.

Zoe Rothblatt  06:25

And when we say back to a monovalent, we don’t mean back to that first vaccine.

Steven Newmark  06:29

Correct.

Zoe Rothblatt  06:29

Just back to targeting one strain but targeting this new strain.

Steven Newmark  06:33

Correct.

Zoe Rothblatt  06:34

And you know, we do this for a few reasons. This isn’t an on the whim decision, but you know, the WHO is not seeing any evidence that the earliest variant is still circulating, so we can focus on you know, XBB, really the only strain out there now. It’s smart to train our immune system to target what’s currently circulating, and Novavax found that a monovalent vaccine may be more advantageous to mice’s immune systems than a bivalent and Maderna found the same thing. So yeah, you know, interesting to see these results and how they’ll end up working in the real world.

Steven Newmark  07:07

Yeah, I mean, obviously, there is the possibility of a variant popping out of nowhere, which would favor putting another variant to the vaccine. But right now, we don’t see another variant. So predicting what that might be is close to impossible. So to come up with a bivalent for no particular reason makes no sense so looks like we’re going to be sticking with the monovalent.

Zoe Rothblatt  07:25

And I guess what we have on our side is all the new variants are really subvariants, because they’re still in that Omicron lineage. We’re not getting into a whole new territory. So I guess that’s still in our favor when we think about, you know, like having less fear about another variant popping up.

Steven Newmark  07:41

Right. Some other interesting snippets from the presentation, Novavax will be an option this fall. Nextgen vaccines are at least two years away, if we’re lucky, be patient. Remember, this was preserved in the federal budget deal that was part of the debt ceiling negotiations. The rest of the year will be telling to see whether COVID-19 has started to settle into this seasonal predictable pattern fingers crossed as that would you know, if we can get something predictable, that’s obviously to our benefit, you know, comparing COVID-19 to the flu is helpful. But some presenters said that the processes are different and needs to be communicated better, or that these are different viruses, and they do will respond somewhat differently.

Zoe Rothblatt  08:18

Yeah, I mean, that’s like actually a really important point, because I like to compare to the flu. And I think it’s almost comforting to compare to the flu saying, we’ll get this shot annually, we know how the flu works, it’s very predictable. But we do have to remember that it’s not the same we just said earlier in the episode COVID is mutating faster than the flu. So although it can be comforting, it’s important to remember that distinction.

Steven Newmark  08:42

Yeah, absolutely. One presenter, I really liked this, he said, don’t let anyone tell you there is no human data on these vaccines, every vaccine manufacturer presented data from humans and animals. So don’t anyone tell you that these are not tested on humans.

Zoe Rothblatt  08:55

And there’s also post market surveillance, right, you know.

Steven Newmark  08:59

Of course, yeah.

Zoe Rothblatt  08:59

The vaccines go out into the world, and they’re still studied. So you know, we have a lot of data there. And another big takeaway, there seems to finally be global alignment. This was not the case last year, when the WHO recommended ba.1 in the US chose ba. 4 5 vaccine formulas This year, the US, EU, and WHO all seem to agree on XBB, which is a welcome development when we think about you know, tackling this globally together.

Steven Newmark  09:25

Yeah. and finally, there was one of the members talked about communication, she said, we need to ensure that we are, quote, sending the right messages and setting the right expectations and quote for the public, including risk communications. Which is exactly why we are discussing this today and why we will continue discussing vaccines and newfound vaccines that are coming our way across different platforms here at GHLF.

Zoe Rothblatt  09:47

And actually, was anything mentioned in the meeting about number of shots for people with weakened immune systems?

Steven Newmark  09:53

No, not yet.

Zoe Rothblatt  09:54

Or are we still waiting to hear because this is a committee meeting. So once the FDA does approval we’ll probably hear on that. Right?

Steven Newmark  10:02

Correct, yes, yes. We don’t know and nothing was discussed as to who might be eligible for these vaccines, whether it would be for only for the elderly or immunocompromised community or none or whether It’s going to be for the public at large. We shall see.

Zoe Rothblatt  10:17

We shall see. So you know, what’s next?

Steven Newmark  10:19

This is my non medical interpretation, I got strong vibes that it seems as though it’s going to be available for all and it’ll be available earlier for the elderly and the immunocompromised in order to allow those populations to obtain their vaccines sooner as far as the number there was no indication as to when there would they would be more than one vaccine needed for this population.

Zoe Rothblatt  10:40

Well, we’ll stay tuned and see if those strong vibes are, in fact, the truth.

Steven Newmark  10:45

So Pfizer, Maderna and Novavax will start manufacturing millions of vaccines. Once they are ready, the FDA will approve the updated vaccine, then the Advisory Committee on Immunization Practices will determine who should get the vaccine. So that’s what we were just talking about – ACIP, this is a group of medical and public health experts that develops recommendations on how to how to use vaccines and control diseases in the United States. So we’ll see what they say and I would say expect this to happen in the late summer or early fall at the latest.

Zoe Rothblatt  11:13

So enjoy your summer vacation and wait to hear what the next vaccine is going to be once you’re all relaxed and tanned and…

Steven Newmark  11:22

Yep.

Zoe Rothblatt  11:22

Get that salt fresh air from the ocean.

Steven Newmark  11:25

Yeah. Right, right.

Zoe Rothblatt  11:26

I’m dreaming of vacation.

Steven Newmark  11:28

All right, all right. I hear you.

Zoe Rothblatt  11:30

I’m like we can’t get to another, you know, cold fall, variants circulating. I love this outdoor time. So you know, we’ll stay tuned on those meetings. Alright, Steven, that brings us to the close of our show. What did you learn today?

Steven Newmark  11:44

You know, as always, I love learning about our quick polls and another learning that our listeners are definitely in the higher range I think when it comes to mask usage still, which is great.

Zoe Rothblatt  11:54

And I learned from you, that was really interesting that COVID is mutating two times faster than the flu. I feel like I really like to compare the two and it’s a good reminder of the distinction between them.

Steven Newmark  12:07

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  12:16

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  12:32

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

Narrator  12:37

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. This week, we have a very special episode with Seth Ginsberg, the President and co-founder of GHLF.

Zoe Rothblatt  00:34

That’s right, Steven, and I’m so excited to have Seth here today, he will talk to us about a new GHLF initiative about making a difference in the community for people living with skin conditions. The program is called the HEROES project, which stands for health education, reliable outreach, and empathetic support. So, welcome to The Health Advocates Seth.

Seth Ginsberg  00:54

Hey, It’s so good to be here.

Zoe Rothblatt  00:56

Why don’t you start off by introducing yourself to our listeners? And you know, just tell them how you got started in this work supporting patients with chronic diseases?

Steven Newmark  01:05

Wow. Well, “none of us is as strong as all of us.” I totally get that in the advocacy world. I don’t get it for a local bank, but okay.

Seth Ginsberg  01:05

Absolutely. Well, I happen to be the co founder and the president of the organization, Global Healthy Living Foundation. And I’m with you today wearing the biggest smile and such happy pride and joy for both joining you all, but also having the chance to talk about this HEROES program that we’re doing now with the Global Healthy Living Foundation. So just to help folks who might not know, I was diagnosed with a form of arthritis called spondyloarthropathy at the age of 13, and I spent my childhood my teenage years really active throughout the community and volunteering for the Arthritis Foundation and doing anything I could to help folks living with arthritis. And then I went away to college, I was a first year student at Babson College and I emailed in the middle of the night, the first month of school, my former high school internship boss, a guy called Lou Tharp. And I said in one sentence, I was miserable and I was having a flare and like life wasn’t going as planned first month of school and I said, there’s got to be a way to bring people together in a positive environment where we could share strength and experience with each other. There have to be other people going through something similar. And when Lou woke up just a few hours later, he wrote, you know, I’d like to become a social entrepreneur, how about we do this together. And then that afternoon later on that day, CreakyJoints was a website, and we’re rounding the corner on 25 years, which is wild, that CreakyJoints has been a real now worldwide force for good really to bring people living with all kinds of rheumatic diseases together. And over the years, you know, when you do this for that length of time, and you just show up every single day to do something to help other people, you know, you aim to evolve. And fortunately, over the years, we’ve really evolved from CreakyJoints into The Global Healthy Living Foundation, which is the official nonprofit 501(C)(3) organization that is the parent of the CreakyJoints online community, and we have the opportunity to advocate and to support and to educate and do research with people living with many different forms of chronic conditions, some related to rheumatic diseases, some not. And working in different areas of focus now, you know, specifically dermatology, for example, skin and scalp health as essentially a sister condition to so many of these autoimmune conditions and rheumatic diseases that we started in really like is the proof of that evolution and speaks to like the need for us all to advocate for each other. And my little soapbox rant here with this local community, I believe it was a bank growing up had this amazing slogan that they would run in the newspaper back when those things were printed. And it said, “none of us is as strong as all of us.” And that really has been like a guiding principle for the advocacy work that we do. And so amazing to get to work with you all and do things like The Health Advocates that we get to really make that difference as a collective.

Seth Ginsberg  03:52

Hey, local marketing.

Steven Newmark  03:54

No, no, no, absolutely. Well, there’s so many great things that GHLF, we at GHLF have done. So many great programs that we’ve run to help patients and let’s talk today about the launch of our latest program, the HEROES program. Tell us what the program is and how this idea came about.

Seth Ginsberg  04:19

Awesome. Yeah, this is one of those fun things we get to talk about in the present and future tense because the HEROES program as Zoe mentioned stands for health education, reliable outreach, and empathetic support. And this is an initiative that GHLF is kicking off literally now as a world wide movement. And our aim with the HEROES program is to equip is to help is to support anybody in the appearance enhancement service provider industry. These are people who are licensed to take care of the way you look essentially, whether it’s your skin as an esthetician, your scalp and your hair as a beauty stylist, or barber or your nails in a manicure pedicure spa. They’re licensed, they have to literally get permission from your state to do these things for you. And our aim is to equip these folks with the information that they need to know about what it’s like living with common skin and scalp conditions so that they can essentially be better at what they are and do and as importantly, be there to support those of us living with skin and scalp conditions and make that a better and quicker and more, you know, healthier process for us. These are folks we all go to, or if not most of us to get our hairs cut, to get something waxed here and there, to get something you know, done and touched up and knowing that the person on the other side of that counter or behind us in that chair is knowledgeable and knowledgeable by GHLF, and trained and a part of our programming means not only are they going to know about these conditions, but they’re going to be an empathetic, helpful and proper steward for that individual. And that’s what HEROES is and why we’re so excited to launch it.

Zoe Rothblatt  06:08

That’s great. That’s so exciting. And I want to pick up on something you said about equipping stylists with information. So we talked to people living with chronic disease all day long. We know a lot about their needs, and what kind of support and research and advocacy they want from us. But I’m wondering, you know, what do stylists want to know? I think we conducted a survey. Could you talk to us a little about the findings there and what stylists want from this program?

Seth Ginsberg  06:33

Absolutely. First, of course, being GHLF we did a survey, we did a study, and we put our absolute Grade A research team in all their PhD glories on to developing and creating a survey that would both inform us and the development of this program, but also to make for the successful implementation to deliver on to these folks that which they want and need. And what we found very clearly, in overwhelmingly positive ways was the fact that these folks are familiar with these conditions. And by the way, I should have stated earlier, we’re talking about common conditions like psoriasis, or atopic dermatitis, which is just a fancy way of saying eczema, or of course, alopecia, which is the loss of hair through a medical condition. And what we want to do is deliver to these folks, these salon HEROES information about psoriasis, eczema alopecia that they can then use in their day to day conversations with their clients, with the people whose hair they’re cutting. This survey said that loud and clear. They’re familiar, they know these conditions are out there, these salons and barbers, but they have no clue essentially, or they’re completely lacking in an understanding and appreciation for what these conditions are all about. And most importantly, and what the study showed us was they want to know, they absolutely need to know and are interested in this. And then we learn things throughout the process, like best ways to send them the information, still very old school, which we appreciate, you know, in terms of wanting flyers and brochures and things like that. But of course, being GHLF, we’re taking to the Instagram. And we have lots of opportunities to have conversations with folks on our Instagram handle, which is GHLF_HEROES, h e r o e s. Zoe, that was I hope an efficient plug.

Zoe Rothblatt  08:26

Amazing plug, if our listeners could see I’m smiling behind the screen.

Steven Newmark  08:29

We may hear that URL a few more times.

Seth Ginsberg  08:31

We need to and I mean, that’s just Instagram. So what happens, let me take a moment here to share a little bit on how it works. So if you are a licensed appearance enhancement service provider, and we’re first starting just to give us an order of operations with our hair salons and barber shops. If you’re a barber or stylist or even work at a barber shop or stylist as a clerk or a hair washer, or whatever you can join HEROES, you enroll in the program to become a hero. And it’s simple, it’s free, of course, totally free. And you basically sign up with an email, cell phone number for text messaging, or an Instagram handle and then select which of those channels you want to get information from and then we have a series and we have various pieces of information as well as invitations to participate in Q&As and events and things like that over time. But not to get ahead of ourselves, it’s a simple enrollment. It’s a very basic program where we’re happy to send you information about these conditions in very human very plain and very, I think, hopefully effective ways. So our aim is for folks to sign up. If you’ve had the opportunity to ever meet someone with psoriasis or eczema or alopecia and wanted to understand more about what they’re going through GHLF is here, GHLF wants you to know there’s a large community of patients who are willing and able to help share their experiences coupled with the medical information that of course you need to know evidence based medical information and then hopefully the world could be a more empathic place.

Steven Newmark  09:03

Seth, what are some ways that patients can advocate for themselves?

Seth Ginsberg  10:04

So, you know, we’re talking about tens of millions of people throughout just the United States and hundreds of millions around the world who live with these skin and scalp conditions and not to digress too much. But you know, psoriasis, for example, it’s an autoimmune condition. It’s like the first cousin, if not the step sibling of rheumatoid arthritis or Crohn’s disease. These are the three kind of rheumatic dermatologic and gastroenterology conditions. But psoriasis is a condition that we need to understand is very present, and nearly 8 million people with a diagnosis of it and many million living undiagnosed, and it affects their lives in treacherous ways, potentially, for a lot of folks, whether that’s from the inside with respect to their immune system, or from the outside from the ways in which the world interacts with you if you have a skin condition like psoriasis. And regardless of whether or not you’re personally impacted, if you have Crohn’s disease, or if you have RA or psoriatic arthritis, this is an opportunity to help one another. And the way in which you can do that is to help enroll folks into this HEROES program, is to allow your salon or your barber to know about this program with encouragement from you who obviously are hopefully you know each other, and if you could share just a moment about your experience, and then an invitation to enroll in HEROES you know, it is the quickest way to help people. And I would say the easiest way, because you’re theoretically going to be sitting in the barber chair or stylists chair in the next few months at least. So if you could direct them to our heroes page, and that’s ghlf.org/heroes, H E R O E S, and if our tech gods are smiling on us, you might even be able to get there just by going to ghlf.org. But fingers are still crossed on that one. But I believe that will be there as well. Anyway, if you could direct your barber or your stylist, that really lovely lady who takes your appointments and checks you in and all that, you could let them know that there’s a program now just for them. And you know, have them take out their phone and have them go to the website right there and have them sign up. And if you can do that, you would really help us and we get to make a massive impact with this movement.

Zoe Rothblatt  12:29

That’s so great. I think many patients can relate to the feeling of not wanting to sit in a chair for three hours of hair dye because their joint stiffness acts up and it’s really uncomfortable or delaying a hair appointment because their skin condition is flaring, and they don’t feel comfortable going it will cause a lot of pain. I can think of so many scenarios where patients were probably shut down or embarrassed by someone in the salon because they weren’t familiar with the condition and the fact that we have potential to change all of those scenarios and help people feel comfortable in everyday life at you know a place that should make you feel beautiful and make you just so comfortable. I’m so excited about this program and I hope that our listeners nominate their stylists.

Seth Ginsberg  13:10

That’s awesome. And that was really well said and exactly right. And I think that when we think about it from our own shared experience standpoint, as patients, this is a chance to really not just fight stigma, but beat it back. And it starts literally at a place like a salon or barber shop where this is like a house of influence, if you will. And if we can give them at least what they ought to know and think about these conditions like that’s a massive leap forward. And then I think if we were to put our heads around what someone’s going through going to that barber or stylist for many years having something like psoriasis, but never really dealing with it correctly. They’re putting themselves at grave danger by ignoring an autoimmune condition, at least from a just general health standpoint and needing to have a proper medical professional aware and a part of what it is, allow for that doctor or nurse to be you know the person to say what they could potentially or not ignore. But so for someone to be able to spot something like that in a very holistic way and hopefully it just accelerate the diagnosis the process that you know getting that person better I think the better and so there are lots of folks that HEROES program aims to help and we need your help and we need everybody’s involvement because your town big or small is going to have a salon or a barber and this person is welcomed to our program. Welcomed to our organization and welcomed to our community of people who want to help others and that’s what the HEROES program is all about and why we need your help.

Steven Newmark  14:50

Seth, before we let you go it speaking to stylists directly, what do you think the number one message is that is important for stylists to know about skin and scalp conditions?

Seth Ginsberg  14:59

I think the stylists can appreciate more and need to know how important they are, and the role they play in being a community health ambassador, and that’s the message to them, and your barber and your stylist, but also your, you know, many other appearance enhancement service providers. But if we just started with our hair, you are a proper health ambassador. And I want you, we want you, GHLF needs you to know about things like skin and scalp conditions. We also want and need and have to have, you know, about things like vaccines and other and a major medical conditions. But we’ll get there eventually. That’s not today’s objective. Today’s objective is a focused one on skin and scalp conditions, because tens of millions of Americans are affected by them. And you know, we haven’t even talked about the need for people with skin of color and I want to talk about that, and the need to create more of a balanced health equity discussion and awareness and just general share of energy around the skin of color and the importance of focus on that with respect to skin and scalp conditions, like psoriasis, and eczema and alopecia. So HEROES has a, you know, tall aim to really make this impact. And GHLF is literally the only organization that could make this what it needs to be.

Zoe Rothblatt  14:59

Well, thank you so much for joining us today. We’ll have to have you back to dissect that last point a bit more, because there’s so much to talk about there. But thank you so much, Seth.

Steven Newmark  16:28

Yeah, really exciting stuff.

Seth Ginsberg  16:30

I didn’t even get to say how much and I need to tell you how much I love listening to this podcast. It’s my favorite podcast. It’s the one that I download and listen to first. And I do also get to remind my friends and family, especially my family, because there’s no excuse, but they need to leave an honest five star review. And they need to write about in the comments what they heard about and thought about and hopefully even plan to do about these things because of The Health Advocates and so is one of my favorite podcasts.

Zoe Rothblatt  17:02

Well, listeners, you heard it here, leave an honest five star review.

Steven Newmark  17:05

Yeah, thank you for that, Seth. Much appreciated.

Seth Ginsberg  17:07

I’ll come back to you soon now that I figured out how to work this microphone.

Zoe Rothblatt  17:11

Amazing. Well, Steven, we heard a lot from Seth today really informative. Do you want to share one piece that you learned today?

Steven Newmark  17:19

Yeah, I mean, I’ve learned several times the URL for our website and our Instagram page, which is great. And I’m definitely going to be checking it out. And it’s just amazing to know how many different ways there are to connect with people, individuals and patients and really make sure that people are living their best lives. So I’m excited to see where we go with this HEROES program.

Zoe Rothblatt  17:39

And I learned a lot from Seth about the survey and how needed this information is in the community.

Steven Newmark  17:44

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

Zoe Rothblatt  17:56

And if you have any questions or topics you want to hear more about, shoot us an email 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 hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  18:19

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

Narrator  18:24

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

Narrator  00:00

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

Steven Newmark  00:08

Welcome to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, Director of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:17

And I’m Zoe Rothbart, 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’re going to talk about the debt ceilings, what negotiations have been made there, along with some news coverage on the preventative coverage arguments in the appeals court, new reports from the CDC, the J&J COVID vaccine, and also the wildfires going on.

Steven Newmark  00:45

Yeah, It’s wild. Let’s start there. We’re recording, it’s Wednesday, June 7 in the morning. And, you know, news changes fast so things may have changed by the time you’ve heard this, a little disclaimer. Zoe and I are both waking up in New York City under a haze of smoke coming from these wildfires in Canada, which seems to have engulfed a large swath of the East Coast, if you will.

Zoe Rothblatt  01:06

And I’m especially thinking about our asthma community, people with respiratory issues. Obviously, this is damaging for health generally, but…

Steven Newmark  01:16

Yeah.

Zoe Rothblatt  01:16

It’s really important to focus on people’s chronic disease in this situation, and think how we can advocate, what you can do. Number one is try to stay at home as much as possible.

Steven Newmark  01:27

Yeah.

Zoe Rothblatt  01:27

Or keep your windows closed.

Steven Newmark  01:29

Yep.

Zoe Rothblatt  01:30

If you have to go outside, It’s important to wear a mask.

Steven Newmark  01:33

Yes, a good mask. And we know what that means by now, right? N95, KN95, everyone knows.

Zoe Rothblatt  01:39

And then in terms of advocacy, I wonder, can you call your legislators? What is there to do in a situation like this?

Steven Newmark  01:46

You know, this is somewhat I don’t wanna say unprecedented, but I think for the Northeast, at least, where we live, it is unprecedented. In California, it’s a somewhat commonplace thing. You know, in terms of advocacy, I think the number one thing is just to make sure that folks are informed, making sure that you have the ability to avoid being outdoors, if necessary, if you have a chronic respiratory illness, such as asthma, or lung cancer, something of that nature, working with your employer to potentially not come in, if necessary, not leave your home, is probably the most important thing. And you know, making sure that the local policymakers are at least keeping the citizenry informed and up to date on what’s happening and what it all means.

Zoe Rothblatt  02:32

Yeah, knowing your rights is really important. You might have protections through the Disabilities Act. Also just having your, especially for asthma, having your preventative medications, your rescue meds nearby, and just making sure that you have the right supply of what you need, in case you encounter more breathing challenges during this time.

Steven Newmark  02:51

Yeah.

Zoe Rothblatt  02:51

I don’t have respiratory illness, but when I went out last night, like I felt like it was definitely heavier to breathe, so I can only imagine how much more so.

Steven Newmark  02:59

Yeah, I mean, we’re focusing on individuals who have respiratory conditions. But really, it’s anyone, at least from what I’m hearing and reading and, you know, learning on the fly. Local health officials are saying, really everyone should avoid being outdoors when necessary and avoid doing strenuous activity outdoors, if at all possible. And if outdoors, do wear a mask, you know, it’s kind of ironic, I took my children to school this morning, I said “you got to wear a mask, but this time, you got to wear a mask outdoors.” So it’s a change, and at least from what I’m reading, and again, I’m basing this on readings from, that I’m finding online. It said not too dissimilar to COVID, I suppose, but it said that the cloth masks and even the surgical masks, are really not very helpful for this, for these pollutants, so you need a strong mask, which is particularly tough for children, because they definitely do not make n95 masks for children. I do have KN95 masks and for my kids and I was able to force that on them, like I said outdoors. But yes, not fun times. So I have to just say, just bringing more levity if I may, it was really spooky looking outside last night here in New York, it was just an orange glow over the city. I literally was able to look in fact, I’m able to look right now at the sun outside my window without sunglasses or anything of that nature, which is, you know, kind of spooky, to say the least. But I don’t know, I don’t know what else to say other than hopefully this passes soon and it’s the way of the future, I guess, with these wildfires that continue to grow year by year.

Zoe Rothblatt  04:28

Yeah, exactly. And just like our hearts go out to everyone affected by this. And…

Steven Newmark  04:34

Absolutely, yeah.

Zoe Rothblatt  04:35

You know, I think It’s just important to talk about it and the impact on health and we’ll continue to do so.

Steven Newmark  04:41

For Sure.

Zoe Rothblatt  04:42

Speaking about the impact on health, on our news list we have this week the Appeals Court heard arguments on the ACA preventive coverage. So…

Steven Newmark  04:50

Yeah.

Zoe Rothblatt  04:50

If you remember a few weeks ago, a few months ago, I’v lost track of time now. A judge had said that the mandate in the Affordable Care Act, Obamacare, to provide preventive care coverage, that employers need to provide preventative care coverage. He was saying that, you know, take down this requirement.

Steven Newmark  05:08

Yep.

Zoe Rothblatt  05:09

So arguments have started to be heard. Those who are in favor of preventive coverage argued that this would cause enormous harms to the 150 million people whose insurance under the ACA. You know, the side arguing against it said that’s overstating the effect and insurers won’t just drop all this coverage. So there’s no ruling just yet, but it could come soon. And I read the decision is expected to be appealed to the Supreme Court, but seems like we’ll continue got news on this for a while.

Steven Newmark  05:39

Yeah, you said it all. So we’ll see. Stay tuned, I guess is the report. There’s also a new report from the CDC on prescription medications. Most adults between the ages of 18 and 64 took at least one prescription medication in 2021. But more than 8% of them, about 9.2 million people, said that they tried to save money by skipping doses, taking less than the prescribed dosage or delaying a prescription fill, according to CDC data. Obviously, that’s troubling. You know, you want to take those that you’re supposed to take for your condition. Adults with disabilities, which is about 20% of those surveyed are more likely than adults without disabilities to skip a medication to reduce costs. So that’s certainly something that’s concerning and all I could say is that would urge everyone to take your medication as prescribed. And I do understand that there is a cost burden involved sometimes with that, but it’s important to do.

Zoe Rothblatt  06:30

This just says to me, there’s like a lot of work left to do with our 50-State Network, our group of advocates and to help pass state laws that make medications more affordable and get patients their medication sooner.

Steven Newmark  06:42

Absolutely. Absolutely. And finally, the FDA has revoked authorization of Johnson and Johnson’s COVID vaccine, and after the company’s Janssen unit requested his withdrawal, they informed the FDA that shots bought by the government had expired, and there was no demand for the product in the United States, it’s just not being used. So hence, it’s been revoked.

Zoe Rothblatt  07:01

Yeah, it’s interesting to talk about this bit of news. It’s not like, oh, the vaccine was bad or something, it was just looking at the current demand, we have more updated shots that target the new variants. And this is just saying that we need to get the vaccine into the hands of people globally that need it and here in the US, it’s just not needed right now.

Steven Newmark  07:21

Exactly. All right. Well, with that, let’s turn to our topic for today, which is the debt ceiling catastrophe, how it was averted and how the deal that was struck impacts health care going forward. Before we start, I was remarking the other day internally to colleagues, including you Zoe, about how I’ve been a student, if you will, a politics for many years, and you sort of hit this moment, when you study something for so long that it’s hard to be surprised. But I was surprised not shocked or blown away or anything but I was definitely mildly surprised by how quickly the deal came together, and just really the end result of the deal itself. There was, on the Democratic side of the ledger, you had a lot of people, a lot of Democrats and left leaning folks complaining that President Biden was not negotiating, or he shouldn’t have been negotiating, or he wasn’t negotiating properly, or he wasn’t using his tools of the office properly. And on the other side, with Kevin McCarthy, there was this thought that he couldn’t really negotiate at all because he was at the whim of the far right of House Republicans. And even if he makes a deal, how’s that going to get through? And in the end, I think, like I said, they surprise me and I’m certainly not the only one. President Biden was able to get a deal and Kevin McCarthy was able to make a deal and also suffer minimal backlash, if you will, from that far right in the house and get that deal passed with a majority of Republicans voting for it as well as majority of Democrats as well. So it was fascinating to see bipartisan action like this still exists on something so major, so interesting.

Zoe Rothblatt  08:48

And you know, what do you think led to the ability to do that? Is it just the pressing nature, the deadline where the debt ceiling was gonna be hit like I was, I’m just wondering you know, for future negotiations?

Steven Newmark  09:00

That’s a good question. I think it’s like any expert in negotiations will tell you, you have to know what each side actually wants. For the Democrats and for Biden, they just they wanted a deal first and foremost, and they wanted a deal with as few cuts as possible, particularly to programs that they consider to be important. Let’s put it that way. It wasn’t really that complicated from the Biden side. Biden also wanted a deal that avoided anything, any kind of quote unquote shenanigans, either the idea of printing a trillion dollar coin to raise the debt ceiling or something like that. For McCarthy and the Republicans. the interesting thing is they didn’t have an overarching agenda. You know, the agenda was they want cuts, but really, it was more they’re looking to hurt President Biden, there’s an election coming up in a year and a half, politics was up was more at play than anything else. There were some pet projects here and there, but ultimately, fiscal policy is not really the main driver for Republicans particularly far right Republicans the way it once had been in the Republican Party many years ago. And I think it just was not something that the far right was going up a hill that they were willing to die on. I think that’s number one. And the other thing is people talk about Kevin McCarthy being a very weak speaker, he barely got in, and he’s at the whim of these folks. But I guess he figured out or someone figured out that he, there is actually no alternative for these far right members of the Republican Party, there’s only a handful of them, maybe a dozen, maybe a few dozen, at best, the overwhelming majority of Republicans are not in that caucus. So it’s not as if they could anoint someone from within their caucus to then elevate to become speaker. And if they were to try to find a replacement for McCarthy, well number one, nobody really even wants the job and number two, they’re not going to, there’s just nobody in the waiting in the wings. So he was sort of in a stronger position than then I think we had realized and folks and realize. He also very smartly did something under the radar, he got Donald Trump to stay silent about the deal, because if Trump had been chirping as a bad deal, what have you getting on Fox News and some of these other outlets that would have applied pressure in a way and really upped the ante. So he was able to tamp down that. And he also got two of the biggest folks on the far right Congress members, Jim Jordan and Marjorie Taylor Greene to be on his side. And he gave them some concessions on things they wanted. So whatever he did, behind the scenes with those folks was a pretty big deal. And it also does show his political acumen, if you will.

Zoe Rothblatt  11:21

So lots of factors at play, let’s dive into what was actually negotiated, what it means for public health.

Steven Newmark  11:28

Yeah.

Zoe Rothblatt  11:28

How big are the budget cuts?

Steven Newmark  11:30

Not very big, essentially, there’s some cuts to domestic programs in 2024, but not heavy, and then it limits spending growth to 1% in fiscal year 2025. Now, that’s still a cut, even though it’s a 1% growth, because after accounting for inflation, 1% growth is still considered a cut. But a couple things to remember about two thirds of the $6 trillion federal budget is mandatory spending on programs like Social Security, Medicare, and Medicaid. Those happen without any action by Congress. Those are mandatory. The rest is determined by Congress and that is the list that will be affected by this deal.

Zoe Rothblatt  12:04

So yeah, just to highlight there – Medicare, Medicaid, you’ve mentioned social security, too. But those two public insurance programs are safe.

Steven Newmark  12:12

Well, with the caveat for now, for now. Yes.

Zoe Rothblatt  12:15

Oversimplifying, but yeah.

Steven Newmark  12:18

Yeah, absolutely, absolutely. The exact cuts are going to be set by legislation, you know that Congress is going to pass later this year for the budget. And if they don’t pass legislation the’re going to be automatic spending cuts of 1% across the board in the federal government, excluding mandatory spending on programs like Social Security, Medicare and Medicaid, but those spending cuts do include the military, which both parties vehemently would oppose spending cuts on so yeah, there’s a strong likelihood that a bill will get passed. So you were meant, you know, you were we were talking about Medicare and Medicaid. One of the things that had been part of the negotiations, as we understand it was a work requirement for Medicaid. Work requirement that was part of the original legislation passed by House Republicans for Medicaid recipients was not part of the final act. The final deal however, the debt ceiling deal does include work requirements for Supplemental Nutritional Assistance Program, SNAP, commonly known as food stamps, and a temporary assistance for needy families or TANF, or some people call it cash welfare, both of which already include work requirements, by the way, but there’s an increase in work requirements. And currently, the way it works is for SNAP, childless adults between the ages of 18 and 49, who do not have a physical or mental condition affecting their ability to work are required to work or volunteer for 80 hours a month, essentially. Now, the change here is they expanded the range from 18 to 49, to go all as high as 50 to 54 year olds. So while it may not seem significant, it could have an impact on people applying for disability support who unable to work. People do get sicker as they get older in their 50s. And, you know, so I don’t want to minimize the effect that it was going to have on these individuals.

Zoe Rothblatt  13:56

Definitely especially, I mean, we started at the top of the episode talking about, you know, the impact of the wildfires, COVID still going on. There’s a lot of things impacting our health and ability to work. So even though it might see minor any little minor change is really big impact in the individuals life, especially for people who rely on these programs.

Steven Newmark  14:15

Absolutely. Another part of the debt ceiling is a clawback on unspent COVID aid. And this is something that Republicans have talked about since taking back the house. You know, they were they’re looking to clawback, take back, money that was unspent during the pandemic, and they did secure a win in this deal with the White House agreeing to reclaim some of the funding in the name of reducing spending. However, and this is important, the deal exempts some of the remaining COVID funding, including, I would say importantly, I was gonna say most importantly, but you know, that’s up for debate, I guess. But very importantly, it leaves in money set aside to help develop next generation of vaccines, as well as funding that pays for COVID vaccines and treatment for uninsured Americans. So that was a pretty big deal to stay in on in terms of future vaccine development and future vaccine distribution.

Zoe Rothblatt  15:01

If we’ve learned anything from COVID, it’s we need to keep innovating and finding you know new update vaccines, updated treatments to help protect people. So it’s good to hear that money is still going toward that.

Steven Newmark  15:12

Right? Right. Some of the money that could be at jeopardy is money set aside for data modernization at the CDC and public health surveillance and that could be in jeopardy. But you know, it’s hard to know exactly where these cuts are gonna come from. But one thing we know is at least it was protected for vaccine development. So overall, with the pandemic winding down, and important funding streams unaffected, public health experts for the most part, are not too worried about this aspect of the deal when it comes to COVID. So could be worse.

Zoe Rothblatt  15:39

And yeah, it seems like overall, we won’t feel the impact of this in our daily life, but things might emerge and we’ll see just like some overall bigger changes.

Steven Newmark  15:48

Yeah. Look, if you’re a 52 year old on, collecting SNAP benefits, and you don’t currently work, you’re gonna feel that.

Zoe Rothblatt  15:55

Right.

Steven Newmark  15:55

But the majority of Americans will not feel this, which is a good thing. That’s good. And, you know, just to go back to What I was saying, at the top, what I hinted at is there’s something healthy, no pun intended, or pun intended, I’m not even sure, about this is how it’s supposed to work. The Republican Party took power in the House of Representatives. And over the last election, they had a set of priorities and things that they wanted to negotiate. The Democrats hold the Senate and the White House, and they have their priorities. And they came together and hammered out a deal that leaves both parties, both sides equally happy and also dissatisfied at the same time. So that’s how governing is supposed to work.

Zoe Rothblatt  16:31

Well, thanks for that recap Steven, I learned a lot from you today, especially just about you know, these inner negotiations and how we came together to get the deal. What did you learn today?

Steven Newmark  16:41

Well, I learned from our prep that the, about the revocation of the J&J COVID vaccine, I’ll light a candle.

Zoe Rothblatt  16:47

In memoriam.

Steven Newmark  16:50

In memoriam J&J COVID vaccine 2020 to 2023. Well, we hope that you learned something too. And before we go, we definitely want to encourage everyone to check out all of our [email protected]/listen.

Zoe Rothblatt  17:04

And if you have any questions for us, topic suggestions, 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 and write a review on Apple podcasts. And definitely hit that subscribe button wherever you listen, I’m Zoe Rothblatt.

Steven Newmark  17:27

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

Narrator  17:33

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

Narrator  00:00

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

Steven Newmark  00:08

Welcome to The Health Advocates a podcast that breaks down major health news of the week to help you make sense of it all. I’m Steven Newmark, 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 going to talk about the current state of COVID. What’s going on since the end of the public health emergency, but first, we do have a few news updates, including updates about the debt ceiling. Steven, why don’t you tell us what’s going on there?

Steven Newmark  00:42

Yeah, so as we’re recording, it looks like a deal has been set. And it’s still awaiting passage, but the Speaker of the House, Kevin McCarthy and the President Joe Biden came together for a deal over Memorial Day weekend, and they believe that they have enough votes in the House to get it passed. The leaders of the Senate, Mitch McConnell, the minority leader, and the Majority Leader, Chuck Schumer, have both come out and said that they have the votes on the Senate side of things. So knock wood, it sounds like a deal has been made. And that does avert what many economists were predicting would have been an economic disaster.

Zoe Rothblatt  01:16

So there’s one important piece in here that I wanted to highlight for our community, which is about the COVID clawbacks.

Steven Newmark  01:22

Sure.

Zoe Rothblatt  01:23

So this current deal would take nearly $30 billion in unspent COVID relief funds.

Steven Newmark  01:29

Yeah.

Zoe Rothblatt  01:29

And this would be, come out of dozens of programs. That doesn’t mean all COVID programming will stop, there definitely is money for some programs, such as veterans health care, COVID treatment and vaccine research. But it definitely is a little uneasy to hear that all this money will be taken out.

Steven Newmark  01:45

Yeah. I mean, look, I think the big picture is, you know, the debt ceiling was an opportunity, if you will, a moment for Republicans to impose their agenda, which included the idea to cut spending, and the idea that you were going to get through some cuts of spending and not have it touch health care was probably not something that’s realistic. That said the deal, for the most part avoided a large swath of health care costs, you never want to hear that there were cuts to health care and COVID-19 and relief funds. However, I think it’s important to note that the deal as currently constituted preserves funding for NextGen. That’s the program that is working to develop the next iteration of COVID vaccines. So that’s pretty important. And it would have been really severe having reached the debt limit without a deal. The disruptions to hospitals, providers, really would have been severe in terms of Medicare Medicaid costs, and most importantly, there have not been cuts to Medicare or Medicaid.

Zoe Rothblatt  02:39

Right, right. Yeah. Well, when you put it in that perspective, I guess you win some you lose some.

Steven Newmark  02:44

Yeah. Yeah, exactly.

Zoe Rothblatt  02:46

So when do we think we could see next steps on this? What should we be on the lookout for?

Steven Newmark  02:51

Well, we are recording on Wednesday, May 31, there’s discussion that it could go for the House vote as early as today, possibly tomorrow. Hopefully this week, the Treasury Secretary says that we’re scheduled to run out of money on June 5, so this would have to get asked by both houses and signed by the president before then if we want to truly avoid the debt ceiling crisis. There are some far right Republicans who are making noise and stating opposition to the bill. But it looks as though there are enough of a combination of Republicans and Democrats in the House to get it passed. And it also looks as though incredibly speaker McCarthy will live to survive and if anything come out actually stronger based on these negotiations with which is quite fascinating.

Zoe Rothblatt  03:38

Yeah. Is it the first time a negotiation like this has happened?

Steven Newmark  03:41

No, no, there have been other debt ceiling crises, the most well known one was in 2011. From Republicans pretty similar, you had an incumbent Democrat seeking reelection a year and a half later, and they imposed a deal that called for, they called the sequestration deal, which, you know, essentially froze a lot of funding in place through the election. So it’s not the first time and it’s been threatened at other times throughout as well.

Zoe Rothblatt  04:07

Okay, well, we’ll keep our eye out on that and our community updated.

Steven Newmark  04:11

Yes.

Zoe Rothblatt  04:11

The next bit of news, the US Food and Drug Administration granted full approval to the COVID treatment paxlovid. This is the antiviral that’s for adults who are at high risk of getting severely sick.

Steven Newmark  04:24

Yeah, you know, this jumped out at me, the researchers estimated that based on COVID rates in January, paxlovid and I’m quoting now can lead to 1500 lives saved and 13,000 hospitalizations averted each week in the United States so this is great news. It’s good to have a full approval and some more tools in our arsenal as we go forward.

Zoe Rothblatt  04:43

Definitely and part of the FDA’s role is post market surveillance. So once a drug is available, they look at how it’s going. This was made first available in December 2021 under the emergency use authorization and it’s good to hear that after they’ve seen it in the real world that now it’s getting this full approval.

Steven Newmark  05:01

Yeah. Well, moving on as we enter the summer, if you will, the unofficial start of summer after Memorial Day, we’ll talk about where we are we, you know, we got through the public health emergency and talk about the current state of affairs. So let’s get into it.

Zoe Rothblatt  05:13

So first on our list, surveillance. What’s happening with the numbers? I think we’re all kind of watching, the public health emergency ends. Does this mean COVID is going to explode? Does the virus know our emergency has ended? What’s going on?

Steven Newmark  05:27

Yeah, well, the numbers are showing that COVID-19 is nosediving across all metrics in all regions of the United States, hospitalizations are down, deaths are down, emergency room visits are down. And also wastewater surveillance, that’s still tracking are showing numbers that are down although the caseload is seen in wastewater still higher than it was in 2020, and 21.

Zoe Rothblatt  05:49

So all in all good news that cases are going down, especially what you said, hospitalizations and deaths are going down. I know, those are the numbers that we’re really looking at now.

Steven Newmark  05:59

Yeah.

Zoe Rothblatt  05:59

And it’s great to hear that this is going down, of course, we have to remain cautious. We always know that in the summer, the trends we’ve seen is that cases go down and in the fall, they come up. So of course, we’ll keep a watchful eye, but it’s good to see that the same pattern is occurring.

Steven Newmark  06:13

Yeah and I think the number one metric is really deaths, because that’s the worst possible outcome. And right now, excess deaths in the United States are hovering about 1% above the pre pandemic rates. And just by comparison, at the height of the pandemic, excess deaths were hovering at around 47%. So that’s a pretty good, you know, statistic to look at.

Zoe Rothblatt  06:33

Of course, because I mean, those percentages are a loved one to someone. And, you know, it breaks my heart to think about where we were three years ago, at this time, here in New York City, we had morgues in the street. And it’s amazing to think about how far we’ve come but also just to take a moment and recognize how many people lost loved ones.

Steven Newmark  06:52

Yeah, for sure. So you know, let’s turn to some noteworthy COVID-19 news. Number one indoor air quality. Up until now, the CDC recommended that we quote unquote, improve ventilation to reduce transmission, but didn’t really provide much guidance until about two weeks ago. So the CDC says aim to deliver five or more air changes per hour. And I can’t believe there’s actually an acronym for this, ACH, air changes per hour of clean air.

Zoe Rothblatt  07:19

If it’s healthcare, there’s always an acronym. Right?

Steven Newmark  07:22

I guess that’s true, I don’t  even think it’s a health care thing. But anyway, five or more air changes per hour, which is a combination of air ventilation filtration to reach this target.

Zoe Rothblatt  07:34

And they also recommended upgrading filters. So just using higher rated filters in your heating or air conditioning system, turn your HVAC system on.

Steven Newmark  07:44

Yes.

Zoe Rothblatt  07:45

Set your ventilation system to circulate more air when people are in the building. Yeah, these are things that we’ve heard all along, but I guess it’s more specifics now.

Steven Newmark  07:53

Yeah, absolutely. Absolutely. They also recommended adding fresh air opening windows, when you’re able to do so using air purifiers, I got a giant one and you should see it.

Zoe Rothblatt  08:04

Do you feel like your air is more clean your breathing fresher?

Steven Newmark  08:08

I don’t actually but whatever, I’m glad It’s there. And to be fair, I should note this but these are more recommendations for the public at large. I think in your own individual house and apartment, you’re really only dealing with your family. But the idea of turning the HVAC system on I think that’s really meant for particularly places of business where strangers are gathering and coming and going at all different times.

Zoe Rothblatt  08:27

That’s actually what I was about to ask. So these are just recommendations from the CDC for businesses and public areas. But I guess there’s there’s no way to check if this is really happening in those places?

Steven Newmark  08:39

That is true. Yeah, that’s true. That’s true. There’s no way to know. But the whole idea is I suppose it starts up on high, the CDC issues their recommendations, and they start to trickle down. You see them a lot in public buildings. You know, a good example of this would be local districts might impose these roles on schools, for example, so that schools can adopt some of these programs keeping their HVACs, on using air filters, things of that nature. Now these costs money, so I don’t know how likely is that school is going to have this in their budget. Just as an example of how this can sort of trickle down. You can, you could start to get ordinances, local city councils, town councils can start to issue ordinances for businesses to either keep an HVAC system on at all times or have an open vinto open window, things of that nature.

Zoe Rothblatt  09:24

It’d be great if there was some like how the restaurants have the letter grade if there was some grade of air quality and people could go in and make like more informed health decisions about what they feel comfortable with knowing the air quality.

Steven Newmark  09:37

True, although I think for every single person living in Los Angeles or in New York, that air quality would probably always be zero, but so true, but yeah, no, I agree with that. I agree with that. Yeah, I got my air purifier because I had people working in my apartment doing construction and I’ve kept it because hopefully it helps smog or something of that nature.

Zoe Rothblatt  09:59

And then the last two on their list was install UV air treatment systems that can kill germs in the air and use portable carbon dioxide monitors.

Steven Newmark  10:09

Yes, a portable co2 monitor helps you determine how stale or fresh the air is in a room. So I guess that would be how you would test and give these grades that Zoe wants to give out to all the buildings.

Zoe Rothblatt  10:20

I’m cracking down.

Steven Newmark  10:22

Right.

Zoe Rothblatt  10:22

The Health Advocates are giving out grades.

Steven Newmark  10:25

Right, exactly. And I don’t know what rhis means, but according to the CDC readings above 800 parts per million suggest that you may need to bring more fresh outdoor air into the space. At least there’s a there’s some kind of a guideline, at least.

Zoe Rothblatt  10:37

Yeah, that is interesting as air quality is I’m so curious about fall boosters, I saw some talk about, you know, maybe eliminating the original strain from the booster, what’s going on there?

Steven Newmark  10:48

Well, the World Health Organization officially now recommends a one strain booster that targets XBB, that’s the Omicron, that’s one of the Omicron sub variants, this fall. So we’re, so the recommendation is to no longer use the original vaccine, which makes sense. Of course, countries don’t have to follow what the WHO says but that’s likely where we’re headed. There’s a big FDA meeting in June to discuss what we’re going to be doing here in the United States.

Zoe Rothblatt  11:13

And this would be the first time that the original strain isn’t included in a vaccine because even when we had the updated vaccine, it was still bivalent booster. So it had the original and the new strain goes through this would be the first time it’s just entirely updated.

Steven Newmark  11:27

Turning to masks, there was a poll conducted by Morning Consult, it was taken between May 6 and May 9, and it’s found that 46% of respondents wear a mask at least some of the time in the past seven days, just looking out my window now, I was very surprised by this number, but so I’m not really sure what it means. But I do know that it is still important to improve masking amongst older adults, especially in times of high transmission which could reoccur we’re in a lull now, but you know, when things come back, hopefully the masks will as well.

Zoe Rothblatt  11:58

Definitely, yeah, I really haven’t seen a lot of masks around. I know people in our community are still masking but when I’m just out and about, it’s few and far between.

Steven Newmark  12:07

Yeah, for sure, and we’ve spoken about this before, that might be a realistic future where the masks mostly come off during a time of a lull, which in some respects makes it easier to then mask up or get folks to mask up when there’s an uptick. You’re certainly not going to have a situation where everyone is going to mask as they did at the height of the pandemic, that will never happen again. But I don’t think it’s unrealistic to say when the situation gets bad, people will put their masks up. And I think also, it’s also it has become and hopefully will continue to remain more socially acceptable or more common, or when an individual feels that they have a cold or something floating around their system to put on a mask to protect others.

Zoe Rothblatt  12:53

Definitely. I mean, that should always have been common courtesy. Like if you have a sniffle or a cough stay home, especially because I know I would sit in class sometimes and someone next to me is sick and I’m like, oh great, I’m immunocompromised, I know I’m gonna get some version of this and just feel so crappy. And you have to sometimes delay your treatment and it’s so much more than a cold when you have a chronic disease it like sometimes can flare up your underlying condition. It’s just, it should be common courtesy to stay home and mask up, especially if you’re not feeling well.

Steven Newmark  13:27

Yeah, for sure, for sure. And also some good news, it looks like we’re on track for an Evusheld replacement, there’s a phase three clinical trial that is showing promising results, and emergency use authorization could be here by the second half of this year. So that’s another more tools in the arsenal to help.

Zoe Rothblatt  13:44

That’s exciting. That’s something our community has been asking for since Evusheld lost, or was taken off of emergency use authorization or just not recommended. As a reminder, this is the preventative COVID treatment for people who are at high risk of getting COVID. So you know, it’s really exciting. The community has been asking a lot, when are we going to get something like this again? You know, does my first one still have any effects? I’m really yearning for this, so it’s exciting to see that that could be coming soon.

Steven Newmark  14:14

Yeah, excellent. A few other quick things, the risk of long COVID after a second infection, studies are showing it’s greatly reduced. It’s not zero, but there’s a new study out that’s coming out that found that the risk of long COVID after a second infection is one in 40 for those over 16 years old and one in 165 for those under 60 years old. I thought as comparison I thought this was kind of interesting, that annual risk of getting into a car accident is one in 30. So it’s less of a risk to contract long COVID after a second infection.

Zoe Rothblatt  14:45

That’s good news and simultaneously research on long COVID is ramping up.

Steven Newmark  14:50

Yeah.

Zoe Rothblatt  14:50

There are still a lot of unanswered questions and people are out there suffering and living with debilitating symptoms and it’s good that attention is still being brought to how can we help these patients?

Steven Newmark  15:03

Yeah. And one last thing I just want to mention before we wrap up, sad thing is that the COVID vaccines rates amongst children are just abysmal. There was a study that came out that said, if we had reached flu vaccine coverage levels, just this past winter, we would have prevented over 10,000 pediatric hospitalizations and over 5 million days of school absences, just by having gotten those vaccines up so you know, better luck next year. I don’t know. That’s unfortunate.

Zoe Rothblatt  15:29

Yeah, I mean, 10,000 pediatric hospitalizations. It’s not a small number.

Steven Newmark  15:33

Yeah, yeah. And every time, I’m gonna put on my old hospital hat, every time a doctor is working on someone who comes into the ER, it means that they’re not working on someone else who is also coming into the ER, their attention is diverted. So it doesn’t just affect those 10,000 individuals coming in. It affects others who are also trying to get into the emergency room as well.

Zoe Rothblatt  15:53

So true. Well, you know, what’s next? We are headed into summer, we’ve seen rates go down, we should get news, like you said, there’s a big meeting coming up about the COVID fall vaccine.

Steven Newmark  16:05

Yes.

Zoe Rothblatt  16:05

So I guess we’ll just stay tuned and wait for more, which seems like the motto of this pandemic. Stay tuned. See what’s next.

Steven Newmark  16:12

Yeah. And if you’re able to get outside and breathe in some good air away from others, which is what summer makes summer so great, right?

Zoe Rothblatt  16:22

Definitely. I know, teah, it’s nice everyone coming out and you realize how many neighbors you have. And how many people live around here because all sudden everyone’s out and walking around and breathing that good air.

Steven Newmark  16:32

Yeah.

Zoe Rothblatt  16:33

So, you know, hoping for good health for everyone this summer and beyond.

Steven Newmark  16:36

Absolutely. Absolutely.

Zoe Rothblatt  16:39

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

Steven Newmark  16:43

Well, you know, I learned in prepping for the show how the numbers are particularly good with COVID and I was again very struck by the death count.

Zoe Rothblatt  16:52

And I learned from you about the debt ceiling and negotiations going on there.

Steven Newmark  16:59

Excellent. Well, we hope that you learn something too. And we’d love to hear from you about all of your stories, you can email us at our new email address [email protected]. We hope to hear from you soon.

Zoe Rothblatt  17:09

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. I’m Zoe Rothblatt.

Steven Newmark  17:24

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

Narrator  17:30

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 live your best life.

Zoe Rothblatt  00:28

And in today’s episode, we’re shining a light on a critical issue affecting patients across the US – that is drug shortages. But first, we do have a news update on our work in Ohio to help bring protections against copay accumulator adjusters.

Steven Newmark  00:44

Yes, excellent. The bill we’re advocating for in Ohio was just officially reintroduced yesterday in the Ohio House as House Bill 177.

Zoe Rothblatt  00:52

So this bill, it’s great, it’s identical to others that have passed in 17 other states. So it’s always good to see that model legislation being used. And it’s working its way federally through Congress as the HELP Copays Act. So it’s good to see momentum around the country as we try to get this passed in Ohio.

Steven Newmark  01:10

Absolutely. Absolutely. I also do want to mention in the house of representatives in Washington, the House Energy and Commerce Committee unanimously advanced the package of health policies that will strengthen price transparency rules for hospitals and insurers, and most importantly, for our listeners will increase scrutiny over pharmacy benefit managers or PBMs.

Zoe Rothblatt  01:29

I was gonna say that’s, you know, great news in the states and great news federally.

Steven Newmark  01:33

Absolutely, so that’s where we are. We’re in Washington, but we’re in all 50 states. And that’s why we advocate, that’s why we do what we do. So hopefully, some of this legislation will become law.

Steven Newmark  01:42

And what’s the next step for the PBM transparency? Who has to review it next? Or what do we think the likelihood of passage is?

Steven Newmark  01:49

So yeah, it advanced out of committee, so it goes to the full house. So we have to hope that it gets attached to a package or at least, or perhaps gets voted on as a standalone measure and in the full house, and if it passes there and then goes on to the Senate and passes there, then it gets reconciled. But that’s a whole other thing, before it finally gets to the President’s desk.

Zoe Rothblatt  02:08

Okay. Well, you know, we’ve talked about this a lot, little increments are pretty big when it comes to policy, and it’s great to see it moving forward.

Steven Newmark  02:15

Absolutely. Absolutely. Well, let’s turn now to our topic for today, something that has been in the news, and is certainly of interest to folks. This should be of interest to all Americans, but certainly those who are listening to our program, and that topic is drug shortages. So drug shortages occur, obviously, when there’s an inadequate supply of medications to meet the demand.

Zoe Rothblatt  02:34

And this impacts people because obviously, it leads to delays in treatment. Sometimes it means inadequate dosing, if someone’s trying to space out the medications, they already have to last or even a complete lack of access altogether to essential medications, because there’s just no end in sight for when the shortage will be over. It’s so important for patients to have regular access to treatment. And It’s a really scary place to be in if you don’t know when the next shipment of your medication is going to be.

Steven Newmark  03:05

Yeah, absolutely. It’s definitely a frustrating feeling to know that your medication is due for a refill as an example, and you’re being told it’s on backorder or whatever the case may be, you know, so what causes these drug shortages? What’s going on?

Zoe Rothblatt  03:16

So yeah, generally, there’s many reasons that can contribute to drug shortage. Number one could be manufacturing issues directly where the drug is coming from. There’s also supply chain disruptions. We definitely saw this in COVID. And then there’s also a high demand, like, remember, in COVID, we saw an increase in demand for hydroxychloroquine. And people were taking it and it took it away from people that needed it most. There could be regulatory challenges. There’s a lot of factors at play when it comes to drug shortages.

Steven Newmark  03:47

Yeah, for sure. So what’s happening now?

Zoe Rothblatt  03:49

Well, like we said, drug shortages is not a new problem, but currently there’s hundreds of drugs in scarce supply and that’s just hitting an all time high for the US. So these drugs include critical drugs for cancer care. I think that’s the one people are most focused on right now. But others on the list include sterile fluid for injections, some antibiotics, ADHD medications and children’s Tylenol.

Steven Newmark  04:13

Yeah, very scary. I saw that the American Cancer Society warned earlier this month about potentially life threatening supply problems of chemotherapy drugs, which don’t have an effective alternative.

Zoe Rothblatt  04:24

That’s scary, you know, don’t have an effective alternative. These are people’s lives. I’m sure we all know someone that’s impacted whether it’s cancer or by a condition, and it’s scary to hear that phrase, there’s no effective alternative. And when you’re living with a condition, especially something like cancer that can be so life threatening, you really don’t want your doctor like having to experiment with alternatives simply because of a drug shortage when you know that there are medications that can help.

Steven Newmark  04:51

Yeah, so what’s going on? What’s the reason for these challenges?

Zoe Rothblatt  04:56

It’s a good question. You know, there’s a few reasons so some are just the old fashioned supply and demand challenges like children’s Tylenol, for instance, one on the list after we had this big flu, RSV and COVID season, yeah people stocked up, Tylenol was in demand and now we’re seeing the effects of it. So, a lot of experts are pointing to the generic drug market. We know that when it comes to medications, there’s a brand name and once it loses its patent, often a generic version comes out, that’s much cheaper, and generics account for 90% of all drugs in the US. And in a few cases, we said high demand or over prescribing may be to blame. But for the most part, the drugs that are in shortage, are in short supply, are from this generic drug list. So experts are saying, well, what’s going on in the generic market that’s causing all of these drugs to be in short supply? And there’s a number of factors that could be contributing, you know, one of the makers of Adderall, which has been in shortage announced plans to scale back its generic business because of low profitability. Lidocaine is in short supply, and the manufacturer there announced a financial restructuring.

Zoe Rothblatt  06:11

So it’s a lot, it sounds like there’s a lot of little things that are contributing, that are maybe disconnected perhaps, particularly when you’re dealing with the generic industry. You’re talking different manufacturers have different reasons. But all in all, it’s contributing to this overall, dare I say chaos.

Zoe Rothblatt  06:29

Exactly. So what happens next? How do we deal with this? Of course, the Biden administration has to get involved players like the FDA, and they are all looking at it. The Biden administration has assembled a team to find long term solutions for you know, making sure that we have a smooth running pharma supply chain. The FDA, they have a team that works day to day to mitigate and report on drug shortages, you can go to their website and type in drugs and look at what’s in shortage, like they’re really on top of reporting that and they’re looking into what additional information they can gather. There’s also four Senate bills with bipartisan support that could help get generic drugs to market more quickly by addressing different tactics or loopholes that cause delays. So there’s definitely attention being drawn to this issue. But a lot of it right now is information gathering and figuring out the exact cause of what’s going on here.

Steven Newmark  07:24

All right, that good that they’re gathering the information. Most importantly, what do you do if you’re affected or potentially affected? And what can you, let’s take it into two steps. What can you do if to prepare yourself? Some of the basics, knowing your medications, know what alternatives might exist? Talk to your doctor, am I on the right path, Zoe?

Zoe Rothblatt  07:43

Definitely, I would say yeah, definitely talk to your doctor, number one. Even if you’re a drug isn’t on a shortage list right now. And I don’t want to scare people. Like I’m not saying your drug will be on the list.

Steven Newmark  07:55

Right right right, no, of course.

Zoe Rothblatt  07:56

But definitely just talk to your doctor say, you know, I heard The Health Advocates talking about this, is this something that could impact me? And if so, what’s our plan, and it’s just great to talk about options ahead of time. So you can really get comfortable with it before you’re faced with it, and often just like it’s a high stress anxiety situation, and you feel like you don’t have a lot of control. So just talking to your doctor about options and alternatives ahead of time is really helpful.

Steven Newmark  08:22

Yeah, absolutely. I would also add to that, talk to your pharmacist, I mean, I have personal experience where a pharmacist, I ran to a drug shortage and a pharmacist recommended or alternative to which I said absolutely not, I like my drug the way it is, damn it. I lucked out, it was able to arrive before I needed it. But I actually subsequently saw my doctor and I mentioned that to her, and she said yeah, yeah, you could have certainly taken this other drug, I would have sent that prescription over in a heartbeat. That’s that would have been fine. So you know, it’s definitely good to talk to your health providers and I would include pharmacists in that conversation as well.

Zoe Rothblatt  08:55

And your pharmacists also may have an idea of when a next shipment could come in or stuff like that, and give you a little foresight into timelines on different delays.

Steven Newmark  09:04

Yeah, yeah, you know, I always get the largest quantity that I’m able to get of a supply of a drug. So sometimes that’s 90 days, sometimes it can only be 30 days, depending on the drugs and for reasons, honestly, with all of our policy expertise, I don’t know why that is, but when I’m able to get a 90 day supply, I always do so.

Zoe Rothblatt  09:24

Me too. I noticed that in COVID actually, that was the first time I was able to start regularly filling 90 day supplies and for most of my medications, it’s stuck and it’s really nice to be able to do that. And it wasn’t like a benefit that was told to me, one day my doctor just tried it and it worked. So it’s always good to just try these things and see what your health plan will cover.

Steven Newmark  09:45

Good tips, you know, hopefully folks are okay and just staying on top of things like this and once again, talking to your provider if something were to happen, look for alternatives and you know, knock on wood that everyone will be okay.

Zoe Rothblatt  09:58

And as always advocate, you know, speak up and share your experiences, call your local elected officials and let them know that their sense of urgency around this issue, encourage them to support legislation that helps bring access to medications. Because, you know, we always talk about how important it is for legislators to hear the story, they can see these things in the news, but to know that it’s impacting real people and their constituents makes such a difference.

Steven Newmark  10:23

Absolutely. Well, this has been great, I think, informative. You know, before we wrap up, I should mention we’re recording this right before Memorial Day weekend. So we hope that folks are able to have a nice three day weekend and, of course, on Monday, we hope that everyone takes a moment to think about those we’ve lost in service to our country.

Zoe Rothblatt  10:42

With that, bring out your white pants and enjoy the start of summer. Well Steven, that brings us to the close of our show, what did you learn today?

Steven Newmark  10:51

Well, I learned from you and I had known about these drug shortages, but I didn’t know that ties to the generic market and how it affects it. So thank you for educating me and our listeners on that.

Zoe Rothblatt  11:01

And I learned about momentum around the PBM transparency. I hope it passes. And by the way to our listeners if you have learnings or any questions for Steven or me, we’ve set up a new email address for all of our podcasts series, which is [email protected]. Send us your questions, your thoughts, suggestions on topics, we’d love to hear from you.

Steven Newmark  11:23

Excellent. Well, we hope that you learned something today. And before we go, we definitely want to encourage everyone to check out all of our [email protected]/listen.

Zoe Rothblatt  11:33

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. I’m Zoe Rothblatt.

Steven Newmark  11:48

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

Narrator  11:53

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

And today we’re going to talk about a new public health crisis unfolding across the United States that is of loneliness. First, we do have a few news updates on the Safe Step Act and our latest quick poll results on the bivalent booster. So, let’s jump into that. Steven, what’s happening with the Safe Step Act?

Steven Newmark  00:47

Yeah, so some good news – After over six years of hard work from patient and provider advocate communities around the country, the Safe Step Act was included in a piece of legislation that is passed out of a Senate committee and it has real momentum at becoming law. Senator Lisa Murkowski, Republican of Alaska, introduced the Safe Step Act as an amendment to a large pharmacy benefit manager reform bill that is being led by Senators Bernie Sanders and Bill Cassidy, the chair and ranking member of the Senate Health Committee that’s, Health, Education, Labor and Pensions Committee.

Zoe Rothblatt  01:17

So this is really exciting and it’s the same bill text as the act has been all along, it’s just included in a larger bill, which helps bring it momentum. So Steven, what’s the next steps for this bill?

Steven Newmark  01:29

I’m glad you asked. The next step for this bill is for it to receive a committee vote and then a full Senate vote before heading to the House for the process to start new in that chamber. I don’t know if you remember that from the great cartoon when a bill becomes a law. Excellent cartoon for those.

Zoe Rothblatt  01:44

Oh yes.

Steven Newmark  01:45

So bills that are led by the bipartisan leaders of the committee do have the best chance of actually taking these steps. So with bipartisan support, we’ll see where it goes. We’re not just going to sit back and be passive observers, of course, but we’re going to do everything we can to ensure that the next steps are taken. The Safe Step Act is a relatively small part of an overall bill so the likelihood that will be cut during the amendment process is slim, because its fiscal impact is quite small. And with over 100 sponsors of the Safe Step Act already in the House, it has an even smaller chance of being cut there during any possible discussions. So we’ll see what happens all in all, where we are right now, this is a huge accomplishment for the advocacy community. But we still have a lot of work to do before this bill becomes a law.

Zoe Rothblatt  02:26

Definitely. And for everyone that’s advocated for step therapy reform, whether as part of this bill federally or also within your own state, it’s definitely helped increase the momentum with states passing laws to help get federal protections and just you know, thank you to everyone in the community has been advocating for so long, and now we get to see the fruits of our labor and see action being taken.

Steven Newmark  02:49

Yeah, absolutely. So we shall see. And we shall continue fighting until it becomes law and signed by the President.

Zoe Rothblatt  02:55

Definitely switching gears a little bit, I have the updates from our latest COVID-19 Patient Support Program quick poll.

Zoe Rothblatt  03:02

This one was about the second bivalent booster. So we talked about this a few episodes ago probably about how a second booster was authorized for people over 65, and people with compromised immune systems. So we wanted to know our community’s plans on getting this booster. And here’s what we found out. Only 12% said they don’t plan on getting it, nearly 43% said that they plan to get it, 22% said they already got it and the other 22% are going to speak to their doctor.

Steven Newmark  03:02

Let’s hear it.

Steven Newmark  03:33

Excellent.

Zoe Rothblatt  03:33

That was really interesting to hear about our community’s plans and that everyone is getting protected and feeling good about it.

Steven Newmark  03:40

Yeah, as folks should. So that’s that puts us in a good place.

Zoe Rothblatt  03:44

And for those who said no, in the free response section, they were able to elaborate and people just mention how they got side effects from the vaccine or it flared their disease or it’s been a lot of shots. Those were some of the common reasons that came up, which is understandable. But I definitely encourage everyone to at least talk to their doctor about these options and what’s right for them.

Steven Newmark  04:04

For sure. All right. Well, let’s get into our main topic for today, which is about loneliness. A new report from the Surgeon General says that social isolation’s effects on mortality are the equivalent of smoking up to 15 cigarettes a day. And I do know from health class in high school that smoking 15 cigarettes a day is definitely not a good thing.

Zoe Rothblatt  04:23

Definitely not. It’s interesting that we’re able to assess that something so physical as smoking to something more, I guess, you know, a mental emotional state of social isolation. There are physical aspects, of course, but wow, that’s shocking to hear that those two are equivalent.

Steven Newmark  04:41

Yeah, research on social isolation and loneliness finds that it contributes to a person having a higher risk of heart disease, stroke, anxiety, depression and dementia, and it makes people more susceptible to infectious diseases. Reports from the Surgeon General are usually reserved for urgent public health issues that require immediate action. So the fact that this report came out from our what we call the nation’s top public health official is a pretty big deal.

Zoe Rothblatt  05:03

Well, yeah, it definitely is a big deal. I’m glad that issues like this are coming to the forefront. Especially, I believe everything you just said about higher risk of these conditions. As someone who is chronically ill, and I hear it a lot from our community, we know how intertwined mental and emotional health are with physical health. And sometimes it’s hard to quantify that or there isn’t exactly treatments that go for both all the time and it’s great to hear a public health leader talking about this so we can get some solutions.

Steven Newmark  05:33

Yeah, it is fascinating. Having read the report myself, I’m not totally shocked and although I was surprised that the report heavily emphasized that its findings were based on trends that were taking place before the pandemic, and they were exasperated during that period of isolation of the pandemic. It was very strongly emphasized in multiple places around the report that these are not due to the pandemic, but if anything, was only exasperated by the pandemic. So let’s get into it. Let’s see what they did. The advisory itself breaks down the measures of social isolation and loneliness in the United States, how they can affect people’s health and introduces recommendations about how to alleviate the epidemic of loneliness. So here are the reports main takeaways. So we’ll start with the first one, Americans are lonelier and more isolated than ever, yet Americans are experiencing more loneliness and isolation than at any time in recent memory. As I said, the trends were underway well before the COVID-19 pandemic, though, of course, living through three years of a public health crisis has likely accelerated these issues, at least for some folks.

Zoe Rothblatt  06:31

And did they talk about how they’re defining loneliness?

Steven Newmark  06:35

Yes. So taking a step back social isolation is an objective measure of lacking connection to family, friends and communities. And loneliness is more is a subjective measure, almost through surveys, like we do a subjective measure of feeling disconnected, generally.

Zoe Rothblatt  06:49

Okay.

Steven Newmark  06:50

And the findings found the findings in the report said, half of Americans say they experienced loneliness, less than 40% said in a 2022 study that they felt quote, very connected to others. Again, It’s subjective and the reports note that a certain amount of solitude even can actually help people become more resilient and has some positive effects. But more objective measures of social isolation also reveal that we’re increasingly feeling more and more isolated from one another.

Zoe Rothblatt  07:16

I was just thinking about how in this day and age, you would think with all the technology we would be even more connected and how this would decrease. And then…

Steven Newmark  07:24

Yeah.

Zoe Rothblatt  07:24

My second thought was, well, Zoe, remember, in COVID, there was all these great virtual options for people and slowly they’ve disappeared and so many people in our community, I know, these studies aren’t specific to our community, but I’m always thinking about our community. And so many people in our community are still isolating and taking more precautions than the general public and a lot of us are upset that the virtual options have gone away. And I definitely think that contributes to these statistics.

Steven Newmark  07:51

Yeah, that that can be a factor. I actually heard an interview with Dr. Murthy, where he talked about the pre pandemic, one of the ways he found himself actually, you know I’m not spilling the beans on the good doctor, because he said this in a very public forum, he said that he experienced his nadir, if you will, in 2018, feeling loneliness, which was where it was first brought to his attention. And one of the ways he helped dig himself out was he got together with two of his friends. So a group of three, and they would get together virtually and again, this was pre pandemic, they would gather virtually, and meet and discuss I don’t remember if he said weekly or monthly, but it was one of the ways he dug out getting together with close friends, even though he couldn’t do so in person, he was able to do so virtually and keep conversations flowing. And probably I don’t recall exactly what he said, but probably, you know, to dive deep and talk about what they were experiencing and help them and help each other out.

Zoe Rothblatt  08:44

Definitely, I actually started something similar with one of my friends we’ll press play on the same show or movie at the same time and talk about it. So it’s yeah, it’s connecting virtually, and it helps like having a plan and reducing that loneliness, for sure.

Steven Newmark  08:58

Yeah, no, for sure. I mean, the other thing about being online and connected and hyper connected, the report does talk about social media and inherent in the phrae social media is the word social, you know, there are a lot of negative effects of social media, as I think most folks are cognizant of these negative emotions that can run deep. It’s not truly connecting you necessarily to people, you’re not actually engaging or interacting. Not to mention sometimes you see very curated lifestyles on Instagram and …

Zoe Rothblatt  09:29

For sure.

Steven Newmark  09:29

It can have a negative effect on you. That said, there is a positive side of course to social media. Groups that have been traditionally marginalized, particularly groups and groups that are in if I will say small numbers in certain communities are able to find a community online in a way that they may not be able to in their physical community. And I think it’s fair to say that certainly holds true for people living with chronic conditions. The online community, one of which is our online community can be a home can be a place is where folks can come together and feel a little bit less isolated. And I think it’s, it is one of the great services that an organization like a GHLF provides. But you know, you have to take the good with the bad and try to accentuate the good if you’re going to be using social media and be aware of its downside as well.

Zoe Rothblatt  10:14

Of course. Taking a step back a little bit, we talked about how the loneliness and social isolation started a bit before COVID, not necessarily a result of the pandemic. So what are some of the other reasons for this increase in isolation and loneliness?

Steven Newmark  10:29

Yeah, well, I mentioned technology, that’s a big deal and all that. Americans are less likely to belong to organizations. Number one being religious organizations, historically, Americans tended to be active religiously, even if they were not, quote unquote, “religious beings.” Being a part of your local church, synagogue, mosque, was a place of social interaction, and certainly a sense of community with numbers. Those numbers have decreased precipitously, local organizations, like I don’t know what you call it, the Elks club, things like that, I don’t know what you call those groups, those are not as popular as it used to be. For kids groups like the Girl Scouts, Boy Scouts, groups that really existed just to almost be places to socially engage, or have lost in terms of popular culture, if you will.

Zoe Rothblatt  11:15

Yeah, you know, it’s so interesting to think about that slowly those things have just like quietly slipped away without you even realizing it and now here we are today, where we’re having the Surgeon General come out and say that we need to fix loneliness. So what is the next step?

Steven Newmark  11:31

Yeah, well, you know, there are other places too. People used to be more, Americans generally were more engaged in their communities more engaged I don’t want to say politics per se, but engaged in being a part of building their communities, a lot of that takes place online now. A lot of it can be vitriolic online, which is actually discouraging to getting people more active as a result. So okay, before we get to what we can do to address let’s also talk about the second major takeaway from the report, which is that loneliness and social isolation affect not just a person’s health, but it also affects the report found that it actually affects the community’s health, which is quite fascinating. So not surprisingly, what we’re talking about isolation and can contribute to a person feeling higher amount of stress, which affects emotional well-being, mental well-being as well as causing the body to release stress hormones. So that’s on the individual level. However, the report also concluded that social isolation in a community actually results in the community at large are having a decrease in life expectancy and higher rates of heart disease, stroke, hypertension, many other illnesses.

Zoe Rothblatt  12:36

Wow.

Steven Newmark  12:36

Yeah, sorry, sorry, to be a downer.

Zoe Rothblatt  12:38

Well, it’s just interesting because when you think about loneliness, like you really think about that as a personal thing, and you’re feeling the loneliness and isolation, but then to say, a community could be feeling that experience together. It’s just so interesting to say community is together and feeling the isolation, and it also causes all these tremendous health issues.

Steven Newmark  13:01

Yeah, absolutely. Which is why it’s being taken so seriously by the surgeon general. You know, another thing I think worth noting is the report itself was focused on the United States. And while things like this may be happening elsewhere, it did touch upon discussions of some other countries and not all countries are experiencing that. The United States is a very individualistic country, we pride our individualism, we pride success based upon the individual. That is somewhat foreign to other countries, if you will, I mean, Alexis de Tocqueville wrote about this way back when, you know, this is who we are as a nation, but it’s gotten to the point where it’s become an issue worth addressing, because it’s affecting our physical health as well.

Zoe Rothblatt  13:42

And to address it, the report mentioned these six pillars. It’s sort of a framework it’s not, you know, a perfect solution mapped out just yet, but there are six pillars to help Americans feel more connected and less isolated from one another. So let’s go through them one by one.

Steven Newmark  13:59

Okay, so the first of the pillars for making Americans feeling more connected and less isolated. Number one is strengthening the social infrastructure creating more communal spaces, more social activities, and better infrastructure to help people access these. So in other words, there should be more places where people to socialize and gather.

Zoe Rothblatt  14:17

And I also want to add, like a better job that I don’t know like, familiarizing each other with those spaces and talking about it more, inviting friends to spaces like I think one is that of course, we need leadership setting up these spaces, but I’m thinking about what could you do on an individual level, invite one friend to come to a new thing with you and just reach out to each other.

Steven Newmark  14:40

Totally, totally. Yeah, that’s actually a big one. Just the idea of talking to your friends. I mean, one of the things that I saw commentary about the report say when somebody calls pick up the phone, I mean, how often does somebody call and you look at your phone, like, I’m not picking up the phone. Who is this person calling without texting me first to give me a warning? But little things like that just picking up the phone and actually having a human to human conversation for a few minutes can go a long way.

Zoe Rothblatt  15:04

It certainly can. I mean, even think about how, I mean I can only speak for myself, but I get so energized after we do these recordings. And you know, we only get to interact with our listeners in a limited capacity but even hearing from all you all, you guys, when you leave comments and email us like, it’s definitely such a community in it of itself.

Steven Newmark  15:23

Yeah, I talk in social circles about how I miss adult interaction, because so much of work has become remote. And being on a Zoom call, I mean, I’m very fortunate that I have a job that I can work remotely that I could be on Zoom and conduct meetings in that fashion, but you miss a lot. You know the meeting starts, you’re lucky to get a perfunctory 10 seconds of “hey how are you”, but right into the meeting and the meeting ends and you press X and that’s it, and you go to your next meeting. Whereas in the olden days, or if you’re fortunate enough to be able to have more in person interactions before the meeting actually starts, you can have some social interactions with the people that are in the room, maybe before or after and you know, it helps foster that.

Zoe Rothblatt  16:04

Definitely. So number two on our list, develop pro connection public policies that account for the need to foster connection when passing laws or formulating regulations this includes anything from transportation to education to housing.

Steven Newmark  16:19

Yeah, essentially getting people to get together more, you know, sharing, carpool, whatever. Number three, mobilize the health sector and train healthcare providers to identify people at risk of isolation and better equip health providers to connect patients with other forms of social support they may need.

Zoe Rothblatt  16:35

This is so needed, we actually it’s Arthritis Awareness Month and Mental Health Awareness Month, and we asked on social media about if people bring up their mental health to their rheumatologist and a lot of people said that there isn’t time or their rheumatologist says, “talk about that with your other doctor.” So we definitely need better resources at our current health care providers to connect us to the next resource or just help us get the support we need.

Steven Newmark  17:01

Yeah, absolutely. Absolutely. All right. Number four, reform digital environments. Not surprising, require more transparency from large tech companies and establish safeguards such as restrictions for young people that can help ameliorate some of the worst effects of social media on vulnerable populations.

Zoe Rothblatt  17:17

Yeah, it sounds obvious, but how do we actually get that done?

Steven Newmark  17:21

Yeah, It’s a tough one. And the reports spent a lot of time talking about the particularly the effects of social media on minors, which, you know, we’re not gonna spend too much time talking about here, there is legislation that would require verification of someone’s age, when they’re under 18, would require parental approval, it would require actually folks who are under the age of 13, to be unable to access social media sites. And for people between the ages of 13 and 18, to have parental approval in order to access social media sites. How is that going to actually be verified? I don’t know.

Zoe Rothblatt  17:53

We’ll see. We’ll wait to hear more.

Steven Newmark  17:55

Right. Yeah, It’s funny. I don’t know if you ever got on a website for like, like, Budweiser or an alcohol company, they asked you to plug in your date of birth?

Zoe Rothblatt  18:03

Yeah. Are you 21? Yes.

Steven Newmark  18:06

So I don’t know how effective that is. But you know, I guess, start somewhere. And I mean, technically, if the safeguards are not strong enough, and they’re finding folks are getting around it, they can invite themselves up for more scrutiny and more, which is not something that big tech wants. So we shall see.

Zoe Rothblatt  18:21

We shall see. Okay, moving on, number five.

Steven Newmark  18:24

Deepen our knowledge, support, academic research, and public information campaigns to improve our understanding of the connections between isolation and health and make people more aware of the problem in the first place. So we are doing that right now. We are making people aware of the issue and helping to spread that. So Dr. Murthy, we’re doing our job here on The Health Advocates podcast.

Zoe Rothblatt  18:44

This feels like the core of public health to me, doing more research, information campaigns, letting each other know, this is what public health is all about.

Steven Newmark  18:53

Yeah, it’s like cigarettes, you know, first step is finding out that they’re bad for you. Second step is doing dozens upon dozens of more research to confirm that it’s bad for you. But then when a tree falls in the forest, you got to make sure someone hears it, so you have actually have to do the public campaigns to let folks know the ill health effects from smoking. And as a result, our smoking rates are way down versus what they had been in the past. Right?

Zoe Rothblatt  19:17

Yes. And hopefully we can get there with isolation. Lastly, we have number six, which is cultivate a culture of connection. So just really reinforcing the values of connection and reducing the polarization that can lead to people feeling more isolated. We know that we’re so polarized these days, like…

Steven Newmark  19:35

Yeah.

Zoe Rothblatt  19:36

In politics, of course, and we’ve seen it a lot in COVID. But you know, it’s also come up in a lot of other ways, even simple social things. Like if you don’t watch a TV show, you’re totally isolated from that conversation all that sudden, you know?

Steven Newmark  19:49

Right, although I was thinking about it in a different way, when it comes to pop culture. I felt like I felt like decades ago, most people did watch particular TV show, whatever the show du jour was and then you come to the office the next day or work and go to the watercooler and you chitchat about the show. Now the shows are all over the place. And people have such curated lists of what they watch. And it actually can foster connection, if you watch the show Succession and you’re a diehard fan, you got five people in your office who are diehard fans, the six of you are going to have some great connection there. But I think about it more with pop culture, the polarization, if you will. When I was a kid, I had records and cassettes dating myself of certain music, but I still listened, I still knew what everything was in the top 40, I had heard everything because you listen to the radio and that’s just It’s somewhat universal. Whereas with Spotify, and all these other things that we use, not everybody gets exposed to the same music, I was always exposed to music that I wasn’t interested in, in listening to if that makes sense.

Zoe Rothblatt  20:51

Yeah, that makes sense. Well, definitely right now is the moment to become a Swiftie, because…

Steven Newmark  20:56

Okay.

Zoe Rothblatt  20:57

The whole Swiftie community is together online, like looking at the same things that happen every weekend at her tour. And it kind of is exactly what you’re talking about everyone coming together talking about…

Steven Newmark  21:11

Yeah.

Zoe Rothblatt  21:11

The little neat tricks she did on stage or the surprise songs, or who got the hat this week. And it’s really fun to all be in it together, even with strangers, just seeing what they’re talking about.

Steven Newmark  21:22

Well, that is like a community, you know, I have my music that I like, and when I go to the concerts, part of what you’re paying for it is that community connection that everyone’s there. And it is interesting, because I’ve also go to concerts of bands that I am not a diehard fan of and I do feel like what’s what these people, they are like in a cult. There’s a fine line between a good social connection and a good cult. Yes, but ya no, that’s certainly a place where people can feel connected, you know, you have a shared interest. I don’t know if that can replace religion, or as a place for us to gather as Americans. But I was gonna say it does whether we like it or not. But yeah, you know, at least at least with music, it’s benign, I’ll say that.

Steven Newmark  22:00

Yes.

Zoe Rothblatt  22:00

For sure. Well, you know, we have these six points. They’re really big undertakings and this is just scratching the surface.

Zoe Rothblatt  22:01

So we’ll see how things develop. But it’s always good to get the conversation started, especially from such a high ranking official.

Steven Newmark  22:17

Yes. We thank Dr. Murthy, for getting the conversation started. And we thank you for listening and being a part of our community and making us feel less isolated.

Zoe Rothblatt  22:24

Oh, yes, I will second that any day of the week. Okay, Steven, that brings us to the close of our show. What do you learn today?

Steven Newmark  22:32

Well I learned a lot. When it comes to loneliness, I think just being here and being with you, and just talking things through, it helps me on a personal level, be less lonely, and I’m appreciative of that appreciate about the connections that I have. And I think going forward, I’m going to try to be even more appreciative and because I know that it’s for my own health, so there’s that.

Zoe Rothblatt  22:51

Yeah, that second part, actually, what you said is trying to appreciate it more just recognizing it is so important. So often we go through the day and don’t recognize little moments and it’s definitely worthwhile to take a step back and take it in. For me my quick learning was just about the Safe Step Act and the momentum there and hopefully we’ll see passage.

Steven Newmark  23:13

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

Zoe Rothblatt  23:21

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 check us out on YouTube. I’m Zoe Rothblatt.

Steven Newmark  23:37

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

Narrator  23:42

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 and 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  00:23

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  00:29

And today, we’re gonna talk about the end of the public health emergencies here in the US for COVID. And the recent World Health Organization announcement, you know, what will change and what it means for our community and public health at large?

Steven Newmark  00:42

Yeah, excellent. So, let’s get into it. The World Health Organization has announced that it’s ending the COVID global health emergency just last week, they declared that COVID is quote, “no longer constitutes a public health emergency of international concern.”

Zoe Rothblatt  00:57

And this decision was made as all these decisions are by a panel of experts and majority agreed that COVID no longer meets this criteria of public health emergency of international concern. And It’s not to say, you know, COVID doesn’t exist anymore. Of course, the virus exists, it’s just not in this heightened state.

Steven Newmark  01:18

Right, essentially they are saying the emergency phase is over but sadly, as we know, COVID itself is here to stay, you know, on recommendation from the Emergency Committee, the WHO is setting up a review committee to advise on the creation of recommendations for countries on the long term management of COVID.

Zoe Rothblatt  01:34

So, that’s really good to hear that although the emergency phase is ending there’s still plans for this next phase and navigating it together and how to manage COVID going forward.

Steven Newmark  01:44

Yeah. So let’s talk a little bit about what this all actually means. What changes are coming, and let’s begin with the vaccines, the COVID vaccines.

Zoe Rothblatt  01:52

Yeah, we’ve actually got a bunch of questions about this from our community, especially because the second bivalent booster was just authorized for our community. People have been emailing and asking us if vaccines are still going to be available for free or at what cost and what’s going to happen given the end of the emergency this week.

Steven Newmark  02:11

Yeah, well, as you know, the federal government has been supplying COVID vaccines, including boosters free of charge to everyone regardless of insurance. Now, this is not expected to change just yet, but may change if the government does not replenish its stockpile of vaccines, not to mention its funding for vaccines. So something that probably can’t be counted on particularly the latter.

Zoe Rothblatt  02:30

And until the stockpile is depleted, people enrolled in certain Medicare programs and most private insurance should still be able to receive vaccines from in network providers with no out of pocket costs. Medicaid members will have vaccines covered without copays through September 30, 2024. And Medicaid will also continue to cover future boosters that are recommended by the CDC.

Steven Newmark  02:55

The Provider Relief Fund, which has supported free vaccines, tests and treatment for individuals who are uninsured was exhausted unfortunately, over a year ago in April of 2022. Late last month, however, the Department of Health and Human Services, HHS announced a $1.1 billion public private partnership to maintain COVID vaccine access as well as some treatments such as antiviral medications for the uninsured. And those funds are expected to last through December of 2024.

Zoe Rothblatt  03:20

Okay, so bottom line for vaccines for now, things are still going to be operating as usual.

Steven Newmark  03:26

Yeah.

Zoe Rothblatt  03:26

But I would say definitely check in with your insurance before you get one just to make sure it’s in coverage or just to be totally aware of what’s happening.

Steven Newmark  03:35

For sure. So, let’s talk about treatments and medications.

Zoe Rothblatt  03:38

Right. We’ve gotten these antivirals that have been authorized during the pandemic that have been extremely life saving, especially for our community who’s at risk for severe COVID. It’s been amazing to have access to these and many are wondering, will I still be able to get these for free?

Steven Newmark  03:56

Well, similar to the vaccine stockpiles, when the supply runs out, manufacturers will set prices for the medications and any additional charge to consumers will depend on individual’s health care plans.

Zoe Rothblatt  04:07

So it kind of seems like it’ll depend on your plan, just like any other treatment or medication, you know, just how it goes regularly for other types of medications.

Steven Newmark  04:16

Exactly, exactly. So you’ll have to check with your provider, you’ll have to check with your specific plan. If you know something happens and you need to obtain medication for those on Medicaid. They will continue to cover treatments at no cost to patients through September 30, 2024. Afterward, the coverage is going to vary state by state, however.

Zoe Rothblatt  04:35

And for people with Medicare, plans that include drug coverage, we’ll continue to have COVID medications covered without costs.

Steven Newmark  04:43

Great. So next, what about the COVID tests?

Zoe Rothblatt  04:46

Oh, boy, Steven, we’ve loved getting the free tests through the government.

Steven Newmark  04:51

Yeah, it was good. It was helpful. Anecdotal story, I was meeting a friend last week and he had some sniffles and he said let me just test to make sure were low and behold, he was positive. So we didn’t meet. So you know, tests still have a value.

Zoe Rothblatt  05:05

Totally. Thank goodness you guys thought of doing the test and had it available. I am seeing some articles depending on what our episode comes out or not how useful this advice is. But before the emergency, you can stockpile or get your supply if you hadn’t yet.

Steven Newmark  05:21

Yeah.

Zoe Rothblatt  05:22

Before it ends and you can still cash in on those like eight free tests a month for your insurance. I’m not exactly sure what it is.

Steven Newmark  05:29

Yeah.

Zoe Rothblatt  05:30

It might be a good idea to get a few now, although remember to check the expiration date because tests do expire.

Steven Newmark  05:36

Right, tests expire, use the older ones first, and so on so forth. Yeah, like I said, I mean, I think that they are still useful if you’re going to be an enclosed environment, and with one or more people and you think someone is developing an illness, test and to be safe, but you know, so we’ll see, we’ll see the future of tests. Hopefully, we’ll get a multitask at some point, something that tests for both flu and COVID simultaneously at-home. But anyway, in terms of the public health emergency ending private insurance companies will no longer be required to cover both at home and lab COVID tests for free. So any out of pocket costs for individuals will depend on your specific plan.

Zoe Rothblatt  06:15

And for Medicare enrollees on certain plans will also have to pay for at-home tests. But laboratory tests ordered by healthcare providers are still fully covered by the dederal insurance program and Medicaid will cover tests without charge similarly until that date, September 30, 2024. And then coverage will depend on states.

Steven Newmark  06:37

Great. So we covered vaccines, we cover treatment, and we cover the tests. So those are the basics of COVID specific stuff. Now what about telehealth? Something we saw a big increase of during the pandemic.

Zoe Rothblatt  06:47

Definitely we saw a huge growth, widespread acceptance of telehealth. People in our community really loved it because we see doctors regularly when we have chronic disease. It was scary when we were in lockdown, and to say I’m gonna miss an appointment, it’s not safe to go in and low and behold, we had telehealth and it was just incredible source of technology for our community to maintain our health. So the reason we had that was because of the public health emergencies and policies that helped expanded it. So now we can assume that some of that is going to go away.

Steven Newmark  07:21

Yeah, for sure.

Zoe Rothblatt  07:22

But I would say the main things to look out for is that you know insurance companies did cover telehealth before, so a lot of those flexibilities will stay in effect.

Steven Newmark  07:33

Yeah.

Zoe Rothblatt  07:33

The main thing is that there was loosening restrictions around what technology you can use and providers treating patients across state lines. So those will probably no longer be waived. So technology systems that don’t comply with HIPAA, you’re probably not going to be able to use that anymore. And if your providers out of state from you, they might not be able to treat you via telehealth anymore.

Steven Newmark  07:55

Yeah.

Zoe Rothblatt  07:56

The requirement to be in the same, licensed in the same state will probably take effect again. But again, you should check with your provider because they could be licensed in your state.

Steven Newmark  08:06

Yeah, exactly. So we’ve spoken a lot about telehealth in the past on this show. And you know, it’s still being figured out to say the least in terms of reimbursement rates and what doctors charge when you have less overhead and when you’re seeing a patient perhaps for less time or as I said with less overhead not having to use an office and clean an office before and after an individual visits, scrub it down the way you would perhaps the costs are less. So perhaps the charges will decrease. And there’ll be some kind of a hybrid mix for providers, which will make it financially beneficial to all.

Zoe Rothblatt  08:37

So you know, another big topic we’ve been relying a lot on these weekly morbidity and mortality reports from the CDC. And a big discussion is how will CDC report on COVID data going forward? I think this is extremely important for our community, because we watch as cases rise, we adjust our safety precautions that we’re taking. And, you know like you said maybe encourage those around us to take tests more frequently. So how will we know about COVID cases going forward?

Steven Newmark  09:08

Yeah, well, the CDC did announce his plan for collecting and reporting COVID data going forward is going to focus less on case rates and more heavily on hospital and death data. And one of the biggest hospitalization data changes is that reporting of suspected cases won’t be required anymore. The CDC will still use its hospitalization surveillance network to collect clinical information to better understand the disease and any changes that occur with severity and symptoms.

Zoe Rothblatt  09:31

And I saw that they were talking about how case data has become less reliable because of the rise in home testing and reporting step downs in some jurisdictions. So leaning into the hospital data is actually more accurate.

Steven Newmark  09:45

Yeah, that’s great. We’re also going to be watching the variants which will tracking will continue but the CDC will adjust some of the metrics it uses to model variant proportions. State level estimates of varying proportions will go away but regional estimate will remain. So we’ll see we’ll see how this goes.

Zoe Rothblatt  10:02

And the CDC will also maintain traveler surveillance, testing wastewater on airplanes in an effort to spot new incoming threats.

Steven Newmark  10:11

Great. And starting in June, the CDC will update its vaccination data on a monthly basis. So that’s where we are.

Zoe Rothblatt  10:18

Ya, overall, it’s not as frequent data as we were getting. But it’s in line with saying that we’re out of this emergency phase and let’s start to monitor COVID, similarly to how we do other diseases, and we’ll look at the data that is relevant now. Because looking at, you know, the same way we reported in 2020, it isn’t the same COVID in 2023, we have to think about it a little differently, especially given the at home testing and new things that we have going on now.

Steven Newmark  10:48

Yeah, absolutely. Absolutely. So, you know, I think the bottom line, it’s fair to say that this is great news. We are moving out of the emergency phase, we can downgrade somewhat from where we had been, vis-a-vis this being classified as emergency and COVID still exists. Of course, other diseases still exist that are out there. But you know, you think back on the last three years, 2020 2021, 2022 or 2023, each year certainly was progressively better. 2020 was, you know, I don’t even want to think about it. 2021 we had vaccines. 2022, things start to get a little bit better, and 2023, we’re able to lift the veil of the emergency, it doesn’t mean if you don’t feel comfortable, if you depending on your comfort level, depending on your discussions with your doctors, that might mean still wearing a mask, or you know, a high quality mask out in public, of course, but things are moving in the right direction, for sure. Which is great news.

Zoe Rothblatt  11:39

I agree with a lot of what you said. And to me, it feels like our day to day life isn’t going to change all the sudden, May 11 when the emergency order ends.

Steven Newmark  11:48

Yeah.

Zoe Rothblatt  11:49

It’s more just now being extra mindful about insurance coverage and when you do get a vaccine, test, treatmen. I mean, us chronic illness people like we’re pros at checking insurance. I’m not too worried. But it will be a bit shocking to have to pay attention to this now. And if we do get a bill, I know people have gotten crazy bills for testing. But I hope that as we move forward and plans are put in place by the government that there is a widespread availability still because these measures are key to keeping COVID at bay.

Steven Newmark  12:21

Yeah, totally. I agree. And I think It’s good. I think it’ll be good collectively for our mental health as well. You can’t live years and years in a constant state of emergency. Zoe, I don’t know how much you remember, you’re so young. But in the mid 2000s, after 9/11, they instituted this color coded thing. And I think every day was like yellow, yellow was like, like we were always in a heightened state. It was always a heightened state. And that’s a horrible way for society to live. And then sometimes we would get these alerts to say we’re in orange today, like what we’re in orange, what the hell is going on. And it’s not a healthy way to live, it doesn’t mean that there’s not a threat, that bad things can happen and that happens every day, depending on where you live. You and I both live in the New York City area, there’s crime, but you know, you can’t let crime dictate your day to day life, and you take your precautions as needed. And similarly, with a virus that is out there, we’ll take our precautions as needed for those of us in the current legal community, and some folks need a higher level of precaution and that’s what we’ll do.

Zoe Rothblatt  13:17

And one final thought I was just thinking about how we’ve had a bunch of public health threats in my lifetime, Zika, Ebola, swine ’09. And I don’t really remember there being such discussion around the end of them, kind of one day I just realized we stopped talking about it. And maybe I was younger so I wasn’t reading news as much. But it feels like a lot of conversation and thought is going into ending these public health emergencies which brings me comfort.

Steven Newmark  13:44

Yeah, I was around for those and I was working in public health for Zika and for swine flu, H1N1, and the major difference, frankly, was that the case load went down to zero. It was almost as if we stopped that in what would be the equivalent of March of 2020, before the case loads got high. So to the extent we declared the emergency, it never got to an elevated point.

Zoe Rothblatt  14:08

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

Steven Newmark  14:12

You know, I learned actually, in the course of this discussion, I was a little cautious about the end of the emergency but just in talking to you it’s almost therapeutic. I feel pretty happy and that this is something to be celebrated. I learned to look on the bright side and be very happy about this.

Zoe Rothblatt  14:25

For sure, and I learned a bit more about what insurance coverage is going to look like going forward for private health plans, Medicaid, and Medicare.

Steven Newmark  14:35

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

Zoe Rothblatt  14:44

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 check us out on YouTube. I’m Zoe Rothblatt.

Steven Newmark  14:58

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

Narrator  15:04

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  00:09

Welcome to the Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. I’m Stephen Newmark, Director of Policy at the Global Healthy Living Foundation.

Zoe Rothblatt  00:18

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

Steven Newmark  00:23

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  00:29

Today, we’re going to talk about the latest news on the debt ceiling, PBM reform, RSV vaccines and advocacy activities in DC. Steven, I’m excited to hear from you. And we also will hear from two others later in the episode, Adam Kegley, and Angel Tapia on osteoporosis awareness and advocacy. So let’s dive into our news.

Steven Newmark  00:50

Yeah, it’s the beginning of May and unfortunately, this could be the last month that the United States is able to pay our bills, because Treasury Secretary Janet Yellen says that we’re going to run out of money unless our debt ceiling is increased by June 1st. So, welcome to May everyone.

Zoe Rothblatt  01:06

More happy news that we just pile on every episode, right?

Steven Newmark  01:10

Yeah.

Zoe Rothblatt  01:10

Okay. So what does this mean? What is happening? What might happen to stop this?

Steven Newmark  01:16

Well, I’m not gonna take the deepest dive into what a debt ceiling standoff is all about. I’ll just say, essentially, you accrue bills, and you have to pay them, right? You at home, you, you take your credit card, you go out and you pay for things, you have a mortgage, perhaps, or what have you. You don’t then decide whether or not you actually want to pay the bills. In the United States, a government, we have a law that says, “In order to pay the bills in order to increase your debt, even after agreeing to pay these bills, you then have to vote to increase the debt limit afterwards.” So It’s like saying, “Hey, we just ran up the credit card tab. This is from a few years ago, actually. And now those bills are coming due. It’s time to pay the bills.” Now, if you don’t pay your bills, what happens to you as an individual? You get a bad credit rating. You get – now, if, as a government, you decide not to pay your bills, or sometimes even if you threaten to not pay your bills, you can affect your credit rating, which is not a position anyone wants to be in. Folks holding treasury bonds, which are considered to be amongst – if not the safest investment you could possibly hold – they will shake up the markets, to say the least. So it’s not something anyone wants to see happen. But what’s going on right now is that attention is in the Senate as the standoff over raising the debt ceiling continues. So Republicans are using the opportunity of the debt ceiling, it being hit, they’re raising the debt ceiling to put pressure on both the Senate and the White House to try and get through some policies that they favor. So they put forth a bill, the House, put forth a bill. It squeaked by with 217 votes. I think that was one more one, now. They got it by one vote to increase the debt ceiling that – but it also includes a laundry list of deep cuts, shall we say, which are – which have essentially been declared dead on arrival by the Senate Majority Leader, Democratic Majority Leader, Chuck Schumer. And it’s also, you know, even if it somehow miraculously passes the Senate, it’s shortly going to be vetoed by President Biden. However, it’s the opening salvo in negotiations. So it’s probably what we should talk about. And we should talk a little bit about what’s in there in terms of health care policies, because, you know, that’s what we do on the show is we discuss what’s going on. So the Republicans are using the debt ceiling standoff to advocate for one of their long standing goals, which is requiring more low income Americans to work in order to receive government benefits, primarily food stamps and Medicaid. So Republicans tend to see work requirements as almost a twofer. It allows them to reduce government spending, while also bolstering the nation’s labor force at a time when some businesses are stuck struggling to find staff. Still, you know, some Republicans also argue that work requirements can lift people out of poverty, and then their reliance on the government. Critics, of course, see the mandates as an attempt to shrink what many consider the vital safety net programs without regard for the people who will be left struggling to put food on the table as a result of losing their food benefits and Medicaid insurance. So let me just take a pause and say what is actually in the plan that passed the House of Representatives. So what’s in the plan is that if childless, able-bodied adults ages 18 to 55 could get food stamps for only three months out of every three years unless they are employed for at least 20 hours a week or meet some other criteria. Currently, the mandate applies to those ages 18 to 49. That was suspended during the COVID public emergency, which expires next month. Medicaid, the Medicaid work requirements – it should be noted – Medicaid has never had a work requirement, but the Trump administration did grant waivers to several states to impose a mandate on certain enrollees, but that those never went through in full force because of litigation. Now, the Congressional Budget Office estimates that about 1.5 million adults, on average, would lose funding for Medicaid if this were to go through. So – but, the analysis also does say that it’s very possible that states might pick up the tab for some of these folks, or actually more than half of them. So it’s ironically a way of – in trying to save money for the federal government –  shifting some money back to the state governments. Also, it should be noted for working age Medicaid beneficiaries without disability, 61% were working in 2021, according to the Kaiser Family Foundation, but of course, they held such low wage jobs that they still qualified for Medicaid. You know, there was one small sample set in Arkansas that, that did mandate work requirements for a little while before it was stopped by the court. And the result there in that small sample size, did – it showed that there was not an increase in [……]. So I’ll pause there and just say that’s, that’s where we are, the debt ceiling debate. The opening salvo includes Medicaid work requirements, which could have an impact on 1.5 million adults.

Steven Newmark  01:45

So thank you, for all that. That was a lot of rich information there, especially in the context of healthcare. I want to ask what happens next? What should we be on the lookout for?

Steven Newmark  06:00

Well, like I said, so now it moves to the Senate. So we’re speaking in the first week of May. The house is in recess this week, and the Senate is conducting hearings specifically on this bill where essentially the Democrats in the Senate are – that control the committees – are basically holding hearings to dismantle the bill,  politically, if you will, but we’ll see where that goes. You know, as for the long term plan, that’s tough to say. The White House says they won’t negotiate over the debt ceiling, which I would argue that’s saying you’re not negotiating is actually a way of negotiating in some respects, right? You say, “I’m not going to negotiate over that?” “Well, what if I give you this, what if I give you this.” ” I’m not gonna negotiate.” You know? It’s like going to the car dealer and walking away, like, that’s part of the negotiating strategy, in some respects. So what that ultimately means, who knows? There’s all kinds of tricks that the Treasury Department can make in terms of this June 1st deadline, maybe make it a little bit later. Sometimes they could pass extenders, extend the debt ceiling for a month, two months, tied into the budget negotiations, which is a whole other rabbit hole I don’t want to go down for our listeners. But ultimately, it will affect the entire economy. Because if we do hit the debt ceiling – in 2011 we came close to hitting the debt ceiling, and our credit rating was affected. The United States’s credit rating, I’m referring to. So if that were to happen again, yeah, it could be – I don’t want to be alarmist and use the word catastrophic. That’s an overused term, but it could have an impact on the economy and ripple through and affect essentially everyone, and in terms of healthcare, you could start seeing, legitimately, cuts that have to take place, if the government is forced to pay their bills, and they don’t have – we don’t have the money, you could start to see true draconian cuts across the board, including in the healthcare space, including places like NIH, including places like FDA, HHS, and so forth.

Zoe Rothblatt  07:45

Yeah, that’s definitely, you know, like, scary as someone – just a regular person, but someone with chronic illness that relies on all of the research being done in these authorities to help guide us and we know the COVID public health emergency’s expiring soon. So now feels like a time to bolster all of these authorities, and it’s a little scary to hear that the opposite could happen.

Steven Newmark  08:07

Yeah, I know. I wish I had better news. I wish there were more exciting things to talk about. Well actually I do a better news; I do have better news. I’ve spent some time in Washington the last few weeks and on a very positive front, the issue of PBM reform is really gaining traction. Senators Bernie Sanders, an independent but of course caucuses with the Democrats, and Bill Cassidy, a Republican, have reached a deal on new legislation that aims to increase transparency measures on PBMs, Pharmacy Benefit Managers, as we all know, listeners know, are essentially the middlemen who help raise the price. So these senators, the two of them, lead the powerful Senate committee called the Health Education, Labor and Pensions Committee or the HELP committee. And so they are working on a legislative package to essentially reform the PBM process. They actually held hearings on Tuesday of this week, Tuesday, May 2nd, and ,in what’s called – known as a markup. So we’ll see where that goes. We – and I say ‘we’ – I mean GHLF, and our advocates have been in Washington, and have been pushing to make sure, you know, ensure that a PBM reform is included in the final piece of legislation, which is really a years long effort on our part just to get PBM – the idea of PBMs – even recognized by lawmakers. So it’s fascinating, talking to a colleague, just a few years ago, we would go down to Washington and talk to legislators, and they didn’t know what a PBM was. So you were talking PBM 101 with them, and now we’re at the point where we’re very close to this actually being a part of a major piece of legislation that – bipartisan legislation – has a strong chance of passing. So now where we are in the advocacy phase is as things sort of get into the muck of the sausage making, we want to make sure that our – us – I’m losing the metaphor but our clump of meat gets, gets to stay in that sausage, if you will, before the final bill gets to the full Senate. So that’s where we are. The bill, I should mention, would increase transparency plans to use PBMs as well as impose transparency measures on PBMs themselves. It would also ban spread pricing and mandate that PBMs pass 100% of the rebates collected from rebates from drug makers to health plans. We advocate that the rebates savings should go to, should go to patients. But I think, due to accounting tricks in terms of legislation and getting it marked up and savings to the government, that’s why they it’s going to health plans. And just to define ‘spread pricing’ for those who don’t know: it refers to the margin between the amount charged to a health plan and the amount paid by a PBM to pharmacies or prescriptions. So that difference would be banned essentially.

Zoe Rothblatt  10:36

And there’s a lot of mystery around what PBMs do and the deals behind, so this bill would help uncover some of that and put the practices more into light and put patients in a stronger position.

Steven Newmark  10:47

Totally. So I think transparency is the key, and I should mention there’s growing momentum on the House side as well. So we hope to see something, so if this does get through the Senate, we’re hopeful on the House side as well. So fingers crossed, we’ll see where we are. More than fingers crossed, because we’re actually going to do work to keep fighting for that.

Zoe Rothblatt  11:05

Exactly. Like you said, it’s years of advocating, and we know policy change takes time, and it’s exciting to see that work pay off.

Steven Newmark  11:14

Absolutely. Absolutely. Yeah, like you said, it is the culmination of years of so many folks doing this, and it’s not just GHLF and our members, but we are members of coalitions that come together from different organizations and different backgrounds, different disease states. Just last week, we participated in a congressional briefing with the Coalition for Skin Diseases. We had the opportunity to meet directly with legislative officials in their offices, as well as a luncheon with dozens of attendees of lawmakers’ offices. It was a great opportunity to educate policymakers about what it’s like to live with a chronic skin condition and how pending legislation can make a difference in the lives of these patients.

Zoe Rothblatt  11:52

That’s great. It’s also, I mean, we’ll hear more from Adam and Angel later in the episode but it’s also – you know – a ton of Awareness months, and I think we have the ear of policymakers during this time. And it’s a great time to just get active and do what you’re doing, what our network is doing and help raise the voice of people living with chronic conditions

Steven Newmark  12:11

For sure. So off with Capitol Hill. Zoe, why don’t you tell us what’s going on with the FDA?

Zoe Rothblatt  12:17

Sure. So in exciting news, the FDA is considering an approval of an RSV vaccine for older adults. So an advisory committee to the FDA voted in favor of approving two different vaccines for older adults for protection against RSV. They were looking at Pfizer and GSK vaccines. So let me tell you a little bit about the data that was shown. We know RSV had a huge impact last flu, winter season. So it’s exciting to see this come out now, ahead of the next you know, winter season when stuff usually crops up. So the data they were looking at, the Pfizer data showed that the vaccine was about 67% effective at preventing people from getting two or more symptoms of RSV-associated lower respiratory tract illness and also 86% effective at preventing three or more symptoms. And then similarly the GSK data showed the vaccine was about 83% effective against RSV lower respiratory tract disease and 94% effective at preventing severe RSV. So this was great data to see. This doesn’t mean the vaccines are approved, though the FDA usually follows guidance from the advisory panel, and their decision is expected this month, during May.

Steven Newmark  13:34

What a difference it would be to have a vaccine for the flu or RSV and for COVID next year.

Steven Newmark  13:43

Right. This one’s specifically for older adults, but I think we could expect that next would come immunocompromised [people] or young children, thinking about the groups that RSV poses the greatest risk to. It’s like we’re getting the foot in the door kind of like with policy, you know? You do one change, and then you add on. So hopefully this means that more news is coming.

Steven Newmark  14:06

Yeah, that’s great. That’s great. Thanks for keeping us informed about that, these important updates. That’s fantastic.

Zoe Rothblatt  14:11

Well, like I mentioned, today I’m joined by Adam Kegley and Angel Tapia to talk about their work in osteoporosis both with awareness, advocacy, and helping patients here and globally. So hi, guys, welcome to the Health Advocates!

Adam Kegley  14:25

Hello!

Angel Tapia  14:26

Hi!

Adam Kegley  14:26

Thanks for having us!

Zoe Rothblatt  14:27

I’m so happy to have you guys here. Why don’t you start off by introducing yourselves and telling our listeners a little bit about you. Angel, I think you’ve been here before, so welcome back!

Angel Tapia  14:37

Thank you! Yes, this is my second appearance on the Health Advocates. So super excited to be back. I’ll reintroduce myself. I’m the Senior Manager of Hispanic Outreach. And I also am the host of Wellness Evolution podcast with Global Healthy Living Foundation. So I’m happy to be back and to be here to really share the great work that we’ve been developing to help raise awareness and support engagement for osteoporosis, fracture prevention and healthy aging.

Adam Kegley  15:02

And I am Adam Kegley. I’m the Manager of Global Partnerships at the Global Healthy Living Foundation. My work is all about -well, you may have guessed it – building partnerships with people, organizations, institutions around the world so that we can really continue to better the lives of people living with chronic conditions. I’m super proud of the work we’ve been doing, and especially about leading our Strong Bones & Me global osteoporosis initiative alongside Angel, which I think we might be here to talk about today.

Zoe Rothblatt  15:31

Definitely. So let’s take it back a few steps. Can you guys both – or one of you – briefly explain osteoporosis, and then I’d love to hear from both of you about, you know, what drew you both to advocate for this condition and help patients.

Adam Kegley  15:45

Sure. So osteoporosis is quote unquote, a “bone thinning” disease. It essentially occurs when your body no longer creates new bone as quickly as it removes old bone, which means that your bones kind of become weak and brittle and are pretty abnormally porous and compressible, kind of like a sponge, actually. And at that point, a fall, or even mild stress, like coughing, sometimes – in the worst cases – can actually cause a bone to break. And, you know, most common osteoporotic fractures include the hip and the wrist, but also the spine, which is something that I think a lot of people forget about, or maybe don’t know about. It’s also known as the “silent thief” as a condition because it kind of silently steals your bone density, often kind of – without knowledge – until someone really experiences a fracture or receives a diagnosis, which unfortunately, means it’s pretty successful thief.

Angel Tapia  16:39

And I’ll say, for me, just being a part of the project was, first off, like, we all have bones. So it was very interesting to be part of a project that even though it’s a diagnosis that I don’t have, it’s something that I could learn from, and because it is something that is preventable, and [related to] the importance of healthy aging. So when Adam brought me into the project, I was just very interested in the education, you know? I had a general understanding of osteoporosis. But when you start looking at the research, and you learn the statistics, like one in three women worldwide, over the age of 50, will experience a broken bone due to osteoporosis, and one in five men will – worldwide – will have that experience as well over the age of 50, to experience the broken bone due to osteoporosis. That, like, brings it home, because it is something that can affect all of us at some point. Also, learning about the different communities that are at higher risk was very interesting. And finding out the differences between first fracture and second fracture and those that are not aware of the resources that are available, or maybe don’t know how to talk to their doctor about their bone health. It just really spoke to my empathy, that we can create something that can be helpful for them to engage in better health, to be able to have more education around how to ask questions to their physicians, and then also how to better take care of themselves.

Adam Kegley  17:57

That’s exactly right. And I could only second everything that Angel said so beautifully. I thought, also, it was kind of touching on what she said, it’s so pervasive and kind of rather insidious, in its nature globally. And when I kind of realized one of the statistics as well, that’s over 200 million people around the world live with it, it’s a pretty staggering number already, but the thing is that so many people go undiagnosed, because they think a fracture is just a fracture. Sometimes doctors or hospitals, when they come in, they just send them right back on their way without any follow up or without receiving a bone density scan, which is also known as a DEXA scan, which is kind of a crucial testing element to be able to determine whether your bone density is thinning over time. It’s a key way to determine whether somebody is either at risk for osteoporosis or has osteoporosis already. So these things were really interesting, I think, to both of us and really hit home that we could hopefully help make a difference in people’s lives, you know, who’ve been affected by it.

Angel Tapia  18:59

And even the creativity with figuring out, you know, what some of the barriers are to access and again to the education that’s so important. And us being able to have partners where we can really bridge the gap for a lot of these communities, I think is a part that we’ve really enjoyed about this project.

Zoe Rothblatt  19:17

Thank you so much for all the work you both are doing. You may know this, I’m not sure, but about a year ago, I found out about a family history with osteoporosis and we knew nothing about it. A lot of what you’re talking about just undiagnosed. And it was just, you know, preventative run of the mill scan and it was like, “Okay, this is what’s going on.” And in turn, now, I’m taking preventative steps because of my risk, which includes bone strengthening exercises and daily calcium, and it just – I feel so fortunate that at a young age, I found out about this and I’m able to take the right steps. But I really didn’t know anything about it until it showed up and as so many in our community know it’s like really intimidating when there’s a diagnosis in the family, and it can feel overwhelming. And I just think the work you’re doing to help give people the education and tools upfront is so important, especially because you said one in three women, so many people worldwide, are dealing with this and not enough is being talked about.

Angel Tapia  20:16

And it’s another condition where we have to think about stigma as well, because when we think about our bones, we’re thinking about when we get older, when we get to a certain age. And when you start learning that, as you said, there’s those preventative measures that we can start taking now, there’s history that we could find out from our family members that, you know, makes this even more important. So advocating for those loved ones to get tested, when they get to the age that they should have these testings and then sharing that information, you know, within the family so that those that aren’t of age yet but need to really start paying attention to family history, and really having that focus on how to maintain healthy bones, I missed an important conversation,

Adam Kegley  20:55

I was just going to build on what both of you said, actually, I think it’s a really important point. And what you mentioned, Zoe, is that, you know, outside of family history as well and I think a lot of people don’t realize that if you’re over 50, and you’ve broken a bone, you need to get a DEXA scan. And there are other situations as well, that the average risk person, it’s 65 or older for women and 70 or older for men, but somebody maybe who’s living with a chronic condition that’s been linked to osteoporosis or bone loss or on medications that have been linked to bone loss- those people, no matter the age, they should also be getting a DEXA scan because they’re at a heightened risk for bone density loss.

Zoe Rothblatt  21:35

And just so it’s clear to people talking about that with their primary care, or is there a specialist that that they would go to for this

Adam Kegley  21:42

That’s a great question. The first step I think would be to talk to your primary care provider. There are specialists as well. If you’re involved with an endocrinologist, or perhaps an orthopedic surgeon, or seeing somebody for bone related issues, of course, you can talk to them as well. But your first step would also be your primary care provider.

Zoe Rothblatt  22:02

So tell us about the Strong Bones & Me program. I’m so excited you guys teased it a little bit. Tell us what’s going on there.

Adam Kegley  22:09

Yeah, the Strong Bones & Me program is basically GHLF’s new global osteoporosis initiative. Our focus is really to educate and inform and engage people living with or affected by osteoporosis, as well as providers and others around the world on the risks of the condition, including multiple fractures and prevention of them how people might ask for support and treatment, or especially follow up care if they’ve experienced a fracture from their providers, as well as additional support from caregivers, family and friends.

Angel Tapia  22:42

I was going to add another great part about it is also the partnerships that we’re creating with this project. Since it is a global initiative, we’re working with many organizations worldwide, that are bone health experts. And that’s a way for us to collaborate with those that are leaders really in bone health and to work with the groups that are represented through our Global Council. So we’ve dubbed it a little bit of “friend raising”. And the key there is because we’re cultivating the partnerships and the support. It’s really supporting each other. We don’t see ourselves as the bone health experts, we know that those are already out there, and we’re partnering with them as part of our Global Council. So really, it is just our goal to help connect the education to the populations that are most at-risk, to make sure that we’re amplifying the education that these organizations are already creating, and that we enhance that with the research that we have also found with the content that we’re able to create, and that we’re able to do this in various languages as well, working in countries that may have limited resources to really amplify this gives us an opportunity to use this material in several languages to reach across the world.

Zoe Rothblatt  23:54

That’s great. making things accessible in so many languages is such a huge part of advocacy and giving people the tools to be able to you know, speak up and advocate for themselves. And I’m curious, you know, what’s it like working with these different groups? Tell us about the global perspectives and your experience there.

Angel Tapia  24:11

So aside from the varied time zones that we all have to get very comfortable with quickly, there is a lot of great learnings. I think the experiences have shown us some of the similarities and differences between the communities that we have in the US and the communities that we have worldwide. I specifically work with the Hispanic community and what I’ve seen with some of the partners that we are now engaging is that the similarities for caring for our aging population is something that’s very important, making sure that we are advocating for our loved ones looking out for the barriers that they may have to health care and also providing financial and emotional support to our elders is something that’s very important in a lot of the countries that we’re working in. So our idea to make sure that caregivers find support, that physicians are hearing patients’ stories so that they’re aware of how their community is being affected once they leave their office, and also just an opportunity for voices to be heard around the world, people sharing their stories that may have different circumstances. So it really brings about that even though there are different languages, we are all sharing this human experience that we are all aging, or we have family members that are aging, so we can learn this education for ourselves, and we can share it with others and realize that better health is always a value, no matter where you are in the world.

Zoe Rothblatt  25:32

That’s great. How can people get involved what’s coming next?

Angel Tapia  25:36

we are going to be launching the Strong Bones & Me website very soon. So we’re going to be sharing great content there that has been created to really highlight the osteoporosis and fracture prevention education. We also will be having a social media promotion happening for Osteoporosis Awareness Month, which is May, and that will be on GHLF, as well as CreakyJoints, social media channels and website. So there’ll be more information to come with that. And I’m sure that we could share more content or a few links for some of our resources on the page for this interview.

Adam Kegley  26:09

That’s right! And we’re also having an osteoporosis and bone health-themed live CreakyChats, one of our great CreakyChats on Twitter on the 15th of May, that’s Monday at 7pm Eastern Time. And we would love for any and all of you to join the chat. We’ll have several co-host organizations from our Global Council and a special guest doctor who is an endocrinologist.

Zoe Rothblatt  26:33

Very cool! So we’ll see everyone on Twitter. You could either do #CreakyChats or follow @CreakyJoints to get the information. Very cool. I’m so excited that there’s ways for our community get involved in the great work you both are doing. Thank you so much for joining us today.

Angel Tapia  26:49

Thank you, Zoe!

Adam Kegley  26:50

Thank you, Zoe!

Steven Newmark  26:53

Wow, that was fantastic, Zoe. It was great hearing from Adam and Angel and hearing what they had to say about osteoporosis.

Zoe Rothblatt  26:59

Well, that brings us to the close of our show. Would you learn today?

Zoe Rothblatt  27:02

Well, I learned from you about the great work that is being done in RSV vaccines for older adults, and how there’s some hope that there may be a vaccine as we go into the winter and knock wood hopefully also for you know, beyond just the older adults.

Zoe Rothblatt  27:17

Definitely, and I learned from you a lot about the debt ceiling. There’s so much to recap there and thank you for breaking it down simply for us.

Steven Newmark  27:25

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

Zoe Rothblatt  27:30

Well everyone, thanks for listening to the Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, please give us a rating and write a review on Apple Podcasts. And definitely check us out on YouTube. I’m Zoe Rothblatt.

Steven Newmark  27:52

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

Narrator  27:57

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

Today we’re going to talk about the recent ACIP committee meeting who advises the CDC on vaccines. We’ll talk about the second bivalent booster available, a mifepristone update, and of course some quick poll results on stress and chronic illness.

Steven Newmark  00:26

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  00:35

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

Steven Newmark  00:40

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

Zoe Rothblatt  00:46

And today’s Steven, we’re going to talk about the future of COVID vaccine scheduling, what was discussed at the recent committee meeting. But first, as always, let’s hop into the news updates.

Steven Newmark  00:57

Well, speaking about vaccines, the second Omicron boosters are here. The FDA recently authorized an additional round of bivalent boosters for those 65 and older and those with weakened immune system.

Zoe Rothblatt  01:08

So the shots are given in two different time increments. So if you’re 65, plus, it’s four months after your first bivalent booster. And if you’re immunocompromised like many in our community, it will be two months after your first bivalent shot.

Steven Newmark  01:22

These updates are a little different because they say these groups can choose to get these vaccines, they are not a requirement.

Zoe Rothblatt  01:28

Yeah, I thought that was interesting as well. I guess our community has been asking a lot of questions about when the next vaccine is going to be. So it’s good to see that these updates are happening. And I know we’ll get a little bit more into this as we go into the committee meeting. But It’s interesting that it’s not a requirement or recommendation, but rather just a choice.

Steven Newmark  01:49

Also interesting is the FDA is withdrawing authorization for the older vaccines targeting the original strain. And so essentially, anyone who is unvaccinated still can get a single dose of the by bivalent booster, so they don’t have to go through the whole primary series to get the updated booster.

Zoe Rothblatt  02:04

Pretty cool and makes sense because we’re seeing that those are the variants that are circulating, and we’re not really seeing any of the original cases, so I’m glad to see this update.

Steven Newmark  02:14

Yeah, definitely. We also have a mifepristone update from the Supreme Court. The Supreme Court preserved access to the medication ordering that the drug should remain broadly available as the litigation plays out in a lower court.

Zoe Rothblatt  02:25

Yes. So basically, this didn’t end the legal battles over the drug that we’ve been talking about but it just assures that mifepristone will remain available until the justice has decided otherwise.

Steven Newmark  02:36

Yeah, the next steps are the case is going to be heard in the United States Fifth Circuit Court of Appeals on May 17. Although the Supreme Court order is likely to stay in place, even after the Fifth Circuit rules so that any decision would be appealed back to the Supreme Court for a final ruling.

Zoe Rothblatt  02:51

Which might not happen for a while, so I guess we’ll keep updating on this as we learn more.

Steven Newmark  02:56

Stay tuned.

Zoe Rothblatt  02:57

And then our third bit of news here, we have a quick poll update. So we asked our community about stress, specifically stress related to their chronic illness and 75% of the people that answered the poll said that in the past seven days they’ve been moderately or very stressed due to their chronic illness.

Steven Newmark  03:15

I’ve been there. What did they do to manage their stress?

Zoe Rothblatt  03:18

That’s a good question. We also asked about that. So people could select all that apply. 61% said they watch TV or movies.  Definitely agree with that. And then nearly half had selected each of these options: they listen to music, read a book, go for a walk or a hike or talk to family and friends.

Steven Newmark  03:36

Those are probably healthier than watching a movie or TV but whatever works, right?

Zoe Rothblatt  03:41

I know. Yeah, I guess It’s like a mix.

Steven Newmark  03:43

You gotta mix. Right? You gotta mix it up, for sure. You’re right, you’re right.

Zoe Rothblatt  03:46

Alright, so let’s hop into our big topic of today. So there was another meeting of the Advisory Committee on Immunization Practices, ACIP for short. This is a committee that advises the CDC and let’s talk about what they discussed. There was a lot of updates on the COVID vaccine specifically. I think we’ll get into some data on the effectiveness, what hospitalizations are looking like, and then ultimately, where does vaccination policy go from here?

Steven Newmark  04:14

First, there was lots of discussion around the vaccine effectiveness and waning immunity and talking about pediatrics. The committee advised that children should stay up to date with COVID vaccines No surprise there. The data showed that monovalent primary series vaccination helped provide protections for children ages three to five against symptomatic COVID infections for at least the first three months after vaccination. It started to wane after roughly the 46 months after the second dose.

Zoe Rothblatt  04:42

And this is similar to the patterns that we’ve seen in adults right, you know, there’s no surprises here.

Steven Newmark  04:48

Exactly. So for most people who got the monovalent shot and are eligible for a bivalent booster it’s been more than a year since their monovalent dose and because of waning immunity, they may have limited protection and it may be time to get that booster.

Zoe Rothblatt  05:01

So yeah, when thinking about what I gathered from this discussion was that in all age groups, there is waning immunity at the four to six month mark, and many people haven’t been vaccinated in over a year. So there’s a lot of people out there that have limited protection.

Steven Newmark  05:17

Absolutely. They also looked at hospitalizations…

Zoe Rothblatt  05:19

And yeah, so the 65 plus age group had the highest rates of COVID associated hospitalization. This isn’t surprising.

Steven Newmark  05:26

No, not at all.

Zoe Rothblatt  05:27

It also makes sense with you know, the new recommendations that 65 plus can get the second bivalent booster. The data did show that they looked at the first bivalent booster and you know, how protective was it for hospitalizations? It showed that it did in fact provide additional protection against emergency department and urgent care encounters and hospitalizations. And most importantly, it showed that the vaccines provide protection against most critical illness, which is you know, being on a ventilator or dying.

Steven Newmark  05:55

Yeah, and then there was also some updates to a COVID vaccine policy. The ultimate goal as for the CDC is to take steps towards simple recommendations to increase the vaccine uptake and they came up with three ways to simplify. The first is a single formulation for mRNA vaccines, the second is to do a single, possibly an annual dose for most individuals to make things easier similar to the flu vaccine. And the third is to allow for flexibility for vulnerable populations including the immunocompromised.

Zoe Rothblatt  06:23

So let’s break down each of these. We’ll start with number one, the single formulation for mRNA COVID vaccines. So basically the committee is supporting the FDA and that transition from the monovalent primary series to the bivalent shot or the mRNA vaccines. That’s a little important distinction, there’s no change for Novavax, or Johnson & Johnson just yet. This is specifically about the mRNA vaccines.

Steven Newmark  06:48

Right. You know, the situation is that many of the monovalent COVID vaccine products have already expired, others are going to expire soon. So the FDA removed authorizations for the monovalent mRNA COVID vaccine products.

Zoe Rothblatt  07:01

And I guess what’s the data to support this? They looked at that in the meeting. And there was a lot of science going on there. And we could just break it down in simple terms as advocates.

Steven Newmark  07:11

That’s what we do here.

Zoe Rothblatt  07:12

So they showed that the bivalent COVID vaccines induce an immune response when given either as a primary series or a booster and when the bivalent shot was given as a primary series induced an antibody response that was 25 times higher than the original monovalent vaccine, which was really good to know that we’re replacing the monovalent shot with the bivalent, and it is in fact producing a higher antibody response.

Steven Newmark  07:40

Yeah, no, that’s great. I mean, there’s limited data to directly compare COVID outcomes after getting the monovalent or the bivalent vaccines, but most studies show that bivalent vaccines expanded the immune response.

Zoe Rothblatt  07:50

So overall, number one, that makes sense, simplify it, get the bivalent shot instead of the monovalent.

Zoe Rothblatt  07:57

Yeah.

Zoe Rothblatt  07:58

Now, what was number two again? That was about a single annual shot, right?

Steven Newmark  08:02

Correct. So when thinking about how frequently people should get a COVID vaccine, data showed that there is an increase in cases in the winter months, and also when there’s an emergence of new variants, of course.

Zoe Rothblatt  08:12

And in the summary, the committee said that they plan for a fall booster that could provide added protections at a time when one you know, the cold weather’s coming, like you just said, or two many would be one year from their last dose and it would help with that waning immunity, right?

Steven Newmark  08:28

I think it would almost sound somewhat similar to this year where many people got the flu and COVID vaccines in tandem, some literally on the same day, some within a few weeks of each other and that looks like we’re going into the future.

Zoe Rothblatt  08:41

That’s what I did. I got them, like within a few days of each other, and it felt good. Just to get that done both together, on a schedule, now I have protections, especially with… I have to hold one of my meds. So it gets a little annoying. And it’s nice to do it together, and just everything at once out of the way.

Steven Newmark  08:59

Definitely, definitely. Hopefully it will be as seamless in the sense that the public emergency is ending. And it will be as simple as going to a pharmacy to get the shots, as many of us did last year, as many of us have done for many, many years with the flu vaccine. So we’ll see. We’ll see what it looks like in the fall. But I’m hopeful that it’ll be pretty, pretty straightforward.

Zoe Rothblatt  09:20

So that was briefly mentioned in the meeting about COVID vaccine cost after the emergency order ends in May. And the committee said that all vaccines purchased by the US government will still be available for free. But there was you know, a few notes on the commercialization of vaccines and having private entities buying vaccines. So we’ll have to see how it all plays out with what it costs. But for now, it’s looking like it’s still covered.

Steven Newmark  09:45

I didn’t quite grasp… they mentioned… I know what you’re referring to in the hearing. Did you happen to grasp or get a sense of whether the U.S. government was going to be purchasing the same quantities that they had been in the past or having a more limited supply and targeted only to those with financial needs, or if it was more likely to be a free for all into the far future. I couldn’t tell.

Zoe Rothblatt  10:06

I couldn’t tell either. From what I saw, it felt vague, kind of like: Oh, this is on our minds, and maybe we’ll discuss it at the next meeting.

Steven Newmark  10:14

All right, well, that’s good. But our preference here as advocates would be for vaccines to be as widely available as possible. We want individuals who are immunocompromised to, of course, get the vaccines and be protected. But we also want the general population to get vaccinated as much as possible to help stop the spread of whatever’s coming our way next fall next winter. So the more accessible these medications, if they’re free, that makes it easier if they’re available at local pharmacies, that makes it easier and more seamless. You know, whatever increases accessibility for the entire population is something that we will continue to advocate for.

Zoe Rothblatt  10:49

Definitely. And one last note on this single annual dose. The data showed that children will likely still need a primary series and a booster to optimize immunity. Like we talked about that data before that immunity was waning in children under five. It’s depending on age, there’s a little bit of difference in how things will go. So always talk to your doctor, I guess is the ultimate rule of thumb. Check in with your doctor about what the timing, when you should get it, which you should get, and all the good stuff there.

Steven Newmark  11:20

Yeah. oh, and then the third piece was the flexibility for vulnerable populations.

Zoe Rothblatt  11:24

Yeah, this goes in line with what we talked about the top of the episode. So this third part with the FDA authorizing a second bivalent booster for 65 plus and immunocompromised, the committee, you know, looked at that decision and were talking about it and ultimately said that right now, there isn’t enough data to support a routine recommendation for both of these groups and just acknowledging that they have to be flexible with vaccine recommendations. So what this ultimately means is, we don’t really know the next step right now for or how often 65 plus and immunocompromised will need a COVID vaccine, but they will continue to look at the data and give recommendations on what feels right and what the data is showing.

Steven Newmark  12:04

Excellent. Well, thank you, Zoe, for covering that for for GHLF. And learning all that you learned from feeding.

Zoe Rothblatt  12:10

Yeah, same to you. It’s good to talk about this. I haven’t seen any big news. I saw news on the boosters. But the rest of these recommendations, it’s like, I feel like we’re not getting news specific to our community. So it feels really important for us to be breaking it down and talking about it. Because again, like a lot of science is talked about, and it’s hard to read the data sometimes. So just having time together to break it down is helpful.

Steven Newmark  12:35

Definitely, definitely. Well, we’ll continue to do that.

Zoe Rothblatt  12:39

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

Steven Newmark  12:43

You know, I learned a lot about what happened, at the ACIP meeting from you and your great reporting, if you will, on the ground. And I think generally, my takeaway is that we’re in a good spot, and I feel comfortable about where we’re going in terms of the vaccines moving forward into the future as the public health emergency ends.

Zoe Rothblatt  13:00

Me too. I would agree with that. My takeaway was just that we have a lot of good data now. And it seems like we’re getting stronger in recommendations for how to move forward than just kind of letting you know COVID lead the way. It feels like we’re really leading now.

Steven Newmark  13:14

For sure. But we hope that you’ll 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  13:26

Well everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, please give us a rating and write a review on Apple Podcasta. And don’t forget to check us out on YouTube. I’m Zoe Rothblatt.

Steven Newmark  13:40

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

Narrator  13:46

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

Narrator  00:00

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

Zoe Rothblatt  00:08

Today on The Health Advocates, I’m joined by guest co host, Corey Greenblatt and we’ll cover the latest news on mifepristone and the court ruling, promising results on a new mRNA cancer vaccine, and plans to expand health insurance coverage to DACA recipients.

Zoe Rothblatt  00:28

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. Our goal is to help you understand what’s happening in the health care world to help you make informed decisions to live your best life. Today, I’m joined with a special guest, co host Corey Greenblatt.

Corey Greenblatt  00:50

That’s right. I’m Corey Greenblatt, Associate Director of Policy and Advocacy at GHLF. And I’m really excited to be joining you as co host today.

Zoe Rothblatt  00:56

Well, thanks for joining us, Corey. I’m excited to have you here. We have a bunch of news items, and I’m looking forward to hearing your thoughts and insights on these.

Zoe Rothblatt  01:05

But first, how are you? Do you have any advocacy updates for us?

Corey Greenblatt  01:09

I’m well, Zoe, I’m doing really well. And yeah, actually, there’s a lot going on in the advocacy world right now. Myself and our Director of Policy, Steven Newmark, your normal co host are going to be in D.C. this week to advocate for reforms for pharmacy benefit managers, as well as a copay accumulator adjuster ban and holding our second congressional briefing to highlight these issues. And then later next month, our colleague JP Summers and I are going to be taking stops at the state capitals in Wisconsin and Ohio along with some local patients there to support copay accumulator adjuster bands there. So that’s obviously a big issue for us, and we’re hoping to see some things done both statewide and federally. So if you are listening to this, and you have any friends in Ohio, and Wisconsin that are interested in getting involved, we’d love to work with them on this.

Zoe Rothblatt  01:57

Very cool and where can they go in order to work with you on that?

Corey Greenblatt  02:01

Well, the first thing to do would be to sign up at the 50-State Network, and then talk to some of our staff members who will give you a call after you sign up and tell them that this is what you’re interested in doing. Because we’d love to work with you.

Zoe Rothblatt  02:11

That’s great. It’s really cool to hear about all the work you and our network are doing both federally and state-side. We’ll definitely have to have you back on in a few weeks for a recap to hear how it goes, how legislators are thinking about these bills, and the overall impact that you’re seeing.

Corey Greenblatt  02:26

Love to come back.

Zoe Rothblatt  02:27

Okay, so let’s dive into our news. First off, we have an update on mifepristone. So last week, we talked about… Steven and I debriefed our listeners about what’s happening with this drug and how this ruling impacts patient access, FDA authority and ultimately, the biopharma industry. So maybe before we jump into the news update here, Corey, do you have any thoughts you wanted to share on this issue? And just you know, what it means that an FDA approved drug can be attacked like this? I’m curious for your thoughts.

Corey Greenblatt  02:57

You know, I have a lot of thoughts on this. Obviously, this is not something that should happen. The FDA has legal authority to say whether a drug is safe or not safe. And simply put, judges are not trained in scientific matters to be able to understand things in the way that the FDA should. So they shouldn’t be making decisions that overrule these decisions. I have a lot more thoughts, but I’ll keep it to that for now.

Zoe Rothblatt  03:21

Totally agreed. Yeah, especially for our chronic disease community. We know how important drugs are in the review process and the safety, the trust we have in the FDA. So hearing this news is definitely scary for us. So the news update here is on Friday, U.S. Supreme Court, Justice Alito temporarily blocked lower court rulings that impose tighter restrictions on mifepristone. So this block is in place until midnight on Wednesday of this week, that’s April 19th. And basically what it does is it just gives justices more time to review the case. And it gives the groups challenging the FDA time to submit a written argument. So it doesn’t necessarily signal which way the court is leaning and how they’ll rule, it just overall, you know, delays the process a bit to get more opinions out there and thinking.

Corey Greenblatt  04:09

Yeah, I think that this is something that it ultimately helps patients right now. I think that making any decision in a snap judgment would ultimately harm the country. So I think that this was the right decision, and we’ll see what happens during written arguments.

Zoe Rothblatt  04:24

Definitely. We’ll see what happens and we’ll keep our listeners updated. Our second news item; This is pretty cool. There’s progress on mRNA cancer vaccines. So I was reading that this Moderna-Merck mRNA vaccine shows promise against skin cancer. And the researchers presented these findings at an American Association for Cancer Research meeting, and it showed that in combination with Merck’s immunotherapy, it cut the risk of death or recurrence of the most deadly skin cancer by 44%.

Corey Greenblatt  04:55

You know, that’s really incredible. The findings also suggested that adding this personalized cancer vaccine to immunotherapy treatments could prolong the time that patients have without reoccurrence, or death. These vaccines are custom built based on an analysis of the patient’s tumors after surgical removal. And they’re designed to train the immune system to recognize and attack specific mutations in cancer cells. You know, this is amazing, it shows how innovation can take something like the COVID vaccine and turn it into a vaccine that impacts cancer across the country and across the world and could have effects for decades down the road.

Zoe Rothblatt  05:32

Exactly. I heard two elements from what you were saying, one, it’s amazing the technology that we got from the COVID vaccine. And so quickly, we’re seeing mRNA vaccines in use, but also too, you talked about how this vaccine is custom built, and you know, using precision medicine, in order to tailor the treatment to the patient is so cool. We see it a lot in the cancer space, we’re starting to see it in the arthritis chronic disease space. But just seeing this in the cancer space, I guess gives me hope. I know patients in our community have cancer, but most of them are living with auto inflammatory conditions, and it gives me hope that we might see something in our space soon.

Corey Greenblatt  06:09

For sure. And you know, while we aren’t scientists, we can, as you said, talk to the use of precision medicine. We’ve seen it with arthritis starting up. And this is just something that I hope to see more of as we’re going down the line.

Zoe Rothblatt  06:22

Me too, and talking about something we hope to see more of our third news item here is insurance expansion for DACA recipients. So the Biden administration announced a plan to expand access to Affordable Care Act and Medicaid coverage for DACA recipients.

Corey Greenblatt  06:37

Yeah, for just a little background. DACA was created in 2012 by the Obama administration, and allows roughly 600,000 immigrants who were brought to the U.S. illegally as children to live and work in the country, legally,

Zoe Rothblatt  06:51

And DACA recipients are already eligible to apply for some health services in the U.S., but it’s primarily around emergency Medicaid. So it’ll pay, you know, for emergency medical treatment for people who meet the state’s Medicaid eligibility requirements, but not the citizenship and immigration status requirements that DACA recipients don’t meet. And you know, I just think like, it’s just not fair to say you’ll only cover emergency services, especially when you live with chronic conditions. And we always talk about preventative care is so important, and how just detrimental it is to wait for someone to get in that emergency state and have to go seek care at this point so I think this is long overdue to allow access to these coverages.

Corey Greenblatt  07:38

Yeah, and I think something that’s really important to point out, especially as it relates to kind of the health care industry that we occupy, nearly half of DACA recipients are uninsured. So when we talk about the importance of Medicaid expansion, or the importance of the Affordable Care Act expansion, or just generally affordable access to health care, this is something that is just exponentially more important for this group of people.

Zoe Rothblatt  08:03

Totally agreed. I have to ask Corey, we know DACA is currently under threat, how likely do you think this is to go through?

Corey Greenblatt  08:10

You know, it’s hard to predict anything at the court level. But the White House has set a goal for finalizing the measure by the end of the month. And then the program is not currently open to new applicants because of legal challenges. So like always, we’ll keep an eye on the courts. We’ll continue to update people through our podcast. And we’ll hope for the best case scenario in this case.

Zoe Rothblatt  08:30

Especially this is coinciding as millions are about to be losing their Medicaid status because of the emergency health orders. So I think it’s really important that these measures are popping up to increase access to health care as one has reduced and other pops up to help our community.

Corey Greenblatt  08:48

Completely agree.

Zoe Rothblatt  08:50

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

Corey Greenblatt  08:54

You know, I learned about the new technologies related to mRNA vaccines. I think that when the COVID vaccine was first created with this technology, we all heard that this was the potential gateway to some really exciting things. And to see that start to pay off is really incredible and makes me really excited for where it could go.

Zoe Rothblatt  09:14

Amen to that. And I learned from you about all the great work happening federally and state side in order to help our patients get access to the care that they need. And listeners, we hope you learned something, too. Before we go we definitely want to shout out all of our podcasts and you can check them out at ghlf.org/listen. 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 check us out on YouTube. I’m Zoe Rothblatt.

Corey Greenblatt  09:50

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

Narrator  09:55

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

Narrator  00:00

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

Steven Newmark  00:08

Last week a federal judge in Texas issued a ruling to revoke the Food and Drug Administration’s 23-year-old approval of a medication. This poses threats to the US government’s regulatory that can go far beyond any one drug, and this appears to be the first time a court has moved toward the ordering of removal of an approved drug from the market over the objection of the FDA. The ruling could open the door to lawsuits to contest approvals, or regulatory decisions related to other medications and if upheld, the Texas decision would shake the very framework of our reliance on the FDA’s pathways for developing new drugs.

Steven Newmark  00:44

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 

00:53

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

Steven Newmark  00:57

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

Zoe Rothblatt  01:03

And today we’re going to talk about a recent ruling by a federal judge around some medication that’s been approved decades ago, and you know how this impacts our community living with chronic disease. But before we get into that, we do have a few news updates.

Steven Newmark  01:18

Yeah, so let’s get into it. The FDA is set to authorize a second booster.

Zoe Rothblatt  01:23

Very cool. So yeah, they’re expected to announce this and this would be a second Omicron-specific booster for those who are 65 and older, and those with a weakened immune system, so very pertinent to our community.

Steven Newmark  01:36

Yeah, absolutely. Once authorized eligible individuals can get it if it has been four months since the first shot of the bivalent booster.

Zoe Rothblatt  01:43

Yeah, we’ll definitely keep our community updated on this. Our second news item; I know you love these, we have quick poll results. This time, we asked about exercise habits, essentially, because COVID just changed the way a lot of us exercise. Like for instance, we don’t have a commute anymore. So we lost that daily walking that we once had, and have to find different ways. And we’re just curious what our community does, especially living with chronic disease where it’s unpredictable. So this is what the results showed: Most people in fact exercise daily or weekly, about half said, you know, multiple times a week to every day. And then about 20% said often weekly. So that means that around 70% are exercising daily or weekly, which was pretty surprising.

Steven Newmark  02:27

Pretty high, for sure. What does that mean exercise? I’m just curious. How do you define exercise? Like walking into the garage to get the car? Does that count? When do you cross the threshold?

Zoe Rothblatt  02:38

I think it’s like about intentional movement. We didn’t ask specifically about what kinds of exercise, it was more looking at how often and what barriers. So two of the biggest barriers were chronic pain and chronic fatigue that stop people from exercising. But I would say it’s more just like with the intention to get movement into your day would count as exercise.

Steven Newmark  02:57

Interesting. I mean, when it comes to intentionally exercising as you put it, or intentionally moving, intentional movement, personally, I find the biggest barrier to be time… to set aside time. Like you said, if you’re commuting, you don’t have to set aside time if you’re walking, you know, that’s sort of built into your day. But if you need to set aside time to go to a gym, or to set aside time to say; Hey, I’m gonna walk for the next 30 minutes around the neighborhood. That’s my number one barrier.

Zoe Rothblatt  03:22

19% agree with you. They said not enough time.

Steven Newmark  03:25

Here you go. It’s like Family Feud, number three on the board. But I will say this, talking about like changing habits because of the pandemic, so I used to… I like working out in the middle of the day, I’ve never been someone who is able to wake up early and work an exercise. I’ve never been somebody who’s able to exercise at the end of a workday. I’m just too exhausted. And I find, frankly, to my dismay, that the gyms are much more crowded during the day because people have much more flexibility and their workday. So I don’t get that. I used to like going to the gym, particularly when it was less crowded, so now I don’t have that advantage. So now I find myself going earlier and earlier into like the seven o’clock hour, which I don’t like to do. But anyway, you know, just one digression on how exercise habits have changed in that sense.

Zoe Rothblatt  04:07

Exactly. It’s different for everyone. And like you said, you have to find what works for you in order to make it a regular practice.

Steven Newmark  04:14

Definitely, definitely.

Zoe Rothblatt  04:15

So let’s jump into our topic. Steven, I’m hoping you could walk us through the timeline, some of the big, you know, rulings here as a lawyer, I’d love to hear your perspective on what’s going on.

Steven Newmark  04:26

So what we’re talking about is that last week, a federal judge in Texas issued a ruling to revoke the Food and Drug Administration’s 23-year-old approval of a medication known as mifepristone. Now this medication is used primarily for terminating pregnancy and also has other medical uses as well. It was approved in the year 2000. So It’s been on the market for 23 years, but the judge is essentially over ruling the FTA’s rule approval and saying that it’s not safe and effective. And I’m really oversimplifying things. In a real… in the real world scenario as we’re recording, the judge put a seven day stay on. The Department of Justice is asking to have that state extended, is looking to get to the appellate court. That’s the Fifth Circuit Court of Appeals to have that listened to. But in blunt terms, as best as any… as legal commentators can tell, this is the first time a judge has essentially overruled the FDA. And this ruling could open the door to lawsuits, to contest approvals or regulatory decisions related to other medications or vaccines. We live in this crazy anti-vax world, and if this decision is upheld, it could really shake the very framework of patients’ reliance and doctors’ reliance and the pharmaceutical’s industry reliance on the FDA’s pathways for developing new drugs.

Zoe Rothblatt  05:41

There’s so many layers to this. I think the first is that, like you said, this is undermining the FDA’s authority. We talk about this all the time, as our listeners may know, I have another podcast called Breaking Down Biosimilars, and especially we talk about this in the context of biosimilars about the FDA’s is rigorous studying of medications and how they look at safety and efficacy and how they have to run animal studies, human clinical trials, post market surveillance, all this stuff to say that a medication’s safe. This one in particular has been around 23 years, you know, we look at that and say: Okay, this is like a tried and true medication that’s been around for a long time. We see the effects of it, and we know that it’s safe in post-market surveillance. So it’s really shocking to see that for the first time a court has moved to order the removal of a drug like this.

Steven Newmark  06:29

Yeah, to remove it from the market is quite unprece… You know, I don’t want to hate to overuse the word, but it’s unbelievable, to say the least. You know, let’s just take a step back and give a little bit of background on who the FDA is, where their authority comes from. In 1939, Congress gave the FDA overarching authority to determine whether drugs are safe and effective in the Food, Drug and Cosmetic Act of 1938. Drug companies must conduct a series of animal studies and human clinical trials that can take years and millions of dollars, frankly, to provide enough evidence to the FDA that a drug is safe and effective in treating a disease or a medical condition.

Zoe Rothblatt  07:06

And now this ruling is coming in and contradicting all that work that the FDA does. It’s put the FDA’s authority into a spotlight like never before. And the case is probably going to go to the Supreme Court and just as someone living with chronic illness, and you know, we represent people with chronic illness, it genuinely scares me that judges and people in this country are able to fight and undermine the FDA like this, especially as someone who relies on medications to keep me functioning in everyday life. I’m just wondering to what end… where does this go?

Steven Newmark  07:39

Yeah, that’s a… that’s a great question. Like, you know, we were saying earlier, it’s scary because if a judge, a single judge, anywhere in the country is able to essentially pull a product from the market, you can envision scenarios where anti-vax folks are able to find an anti-vax judge with sympathetic views and pull a vaccine on the market based upon similar ruling, if you will. And you know, not to mention, basically any medication folks don’t like, and they can get to a judge, and the judge could issue the ruling. So it’s scary to say the least. I mean, since the Food Drug and Cosmetic Act passed in 1938, courts have usually defered to the federal agencies’ scientific expertise and oversight.

Zoe Rothblatt  08:18

And you know, we saw this this past summer with methotrexate access, and while that seems to have died down, and of course, people were restricted access, it seems to the situation improved a bit. But we know that when situations like this are happening, it also does cause you know, pharmacists to take pause, doctors to take pause. And even though we don’t know the final ruling, yet, people could have restricted access already, even though it’s still available. And all this news gets people to be overly cautious and people are not able to access their medications like how we saw with methotrexate. I’ve seen some states are already stockpiling this medication, specifically so people can have access. But it’s also just the implication of the news going around has such an impact on, you know, direct patient access already.

Steven Newmark  09:07

Yeah, no, absolutely. Like you said, it essentially throws chaos into the world of the pharmaceutical industry, the medical community and the patient community. It’s a head scratcher, and people don’t know what to do. And oftentimes people can be cautious and say: Well, I’d rather just not get involved and the easiest way to do that is if I’m a doctor not to prescribe a medication, if I’m a pharmacist, it’s not to fulfill certain prescriptions. And it’s scary if you’re a patient because throughout all of this, the patient’s voice tends to get lost, the individuals who are out there being most affected by such a I call it a perverse authority seen in our judiciary.

Zoe Rothblatt  09:41

So let’s walk through some of the timeline of this what happened exactly after the judge, you know, declared that this approval should be invalid?

Steven Newmark  09:50

Sure. As I mentioned, he did put a seven day stay on that… on the exact same day, I guess coincidentally, or perhaps not coincidentally, I don’t really know, a case in Washington state that was brought by Democratic Attorney General’s from 17 states, and the District of Columbia was live and it was challenging extra restrictions that the FDA imposes on Mifepristone. And in a preliminary injunction, the judge there in Washington State ordered the FDA specifically not to limit the drugs availability in those jurisdictions. So you’re talking about 17 states plus the District of Columbia have been ordered not to limit the availability. So now you have essentially two competing rulings, and those are in two different circuits not to get too bogged down, but the appellate courts in the United States are broken down into nine circuits. So you’re dealing with two separate circuits, one out of Texas and one out of Washington State. And if there’s a conflict at the circuit level as well, eventually, it’s likely to make its way up to the Supreme Court. And in the immediate aftermath in the Texas case, the Justice Department, which is representing the FDA, of course, immediately said it would appeal the Texas injunction to the Fifth Circuit Court of Appeals.

Zoe Rothblatt  10:54

So what happens next? This is like the lot of legal jargon.

Steven Newmark  10:58

Yeah, there’s a lot of legal jargon. That’s true. So some folks have called upon the Biden administration and Health and Human Services to ignore the judge’s ruling. They have actually come out and said that they will not ignore a judge’s ruling. That’s probably not the smartest move. It’s also not a way to endear yourself to the Supreme Court where you ultimately want to get a ruling in your favor. So the likely scenario is that this makes its way to the Supreme Court. Now, does the ruling get stayed until it gets the Supreme Court, that remains to be seen? And what happens in those 17 states versus the rest of the country? Again, it’s very chaotic, to say the least we’re dealing with one specific drug. I will add, they’re starting to become political pressure there, that the medical community and the pharmaceutical industry have put out, missives decrying this ruling. So we’ll see where it goes is my tepid answer. I know, it’s not fun to say that. Let me get back into more comfortable waters for myself. I will just say the ruling could violate the Constitution’s Commerce Clause, which prohibits states from impairing interstate commerce, and also the Supremacy Clause which says the federal laws – in this case Congress’s decision to authorize the FDA to regulate drugs – have priority over conflicting state laws. This theory has rarely been tested in court. However, there was a case that involved Massachusetts about a decade ago, where Massachusetts tried to ban a new opioid because state officials worried that the drug itself could be abused, leading to addiction or overdose. A federal judge in that case ruled that states do not have authority on their own to ban such drug. So not exactly on point because that was done by the state of Massachusetts and not by a federal judge. But it gives you an idea of how the federal judiciary has differed generally to the FDA.

Zoe Rothblatt  12:41

Right. So could this case be used then in support of the precedent to uphold the availability of the drug?

Steven Newmark  12:47

Yeah, absolutely. Absolutely. General precedent is under the Commerce Clause, and under the Supremacy Clause. You defer to Congress’s decision to authorize the FDA to regulate drugs such as the one issue here.

Zoe Rothblatt  13:01

Well, you know, that kind of just begs me to ask how then a judge is even capable of making this ruling in the first place if these clauses are in place at federal power?

Steven Newmark  13:11

Well, you know, rulings are made by judges, judges are humans, humans, they’re not always… they don’t always get things right, and that you get overturned. That’s why there are appellate courts to sometimes overrule lower courts and so forth. And even then, even at the highest level judges, shall we say, sometimes get things wrong. We’ve had some horrific decisions over the years and are even at the Supreme Court level, we’ve had the Dred Scott case Plessy versus Ferguson, which said that separate but equal did not violate equal protection clauses of the 14th amendment that was overturned decades later by Brown versus Board of Education. So there are bad rulings that occur. What a lot of legal scholars were considered to be bad rulings, it happens. And you know, that’s just how I guess that’s the best answer I can possibly give is how it can be done. But I will add, judges are human so they are receptive to the real world. And in this situation, upending the FDA is authority could be disruptive to an entire industry, the pharmaceutical industry, to patients to the medical community. You know, the industry itself spends many years and millions of dollars looking for drug approval. If FDA approval can be withheld by a judge, by one federal judge, somewhere in the United States, this could really stifle drug manufacturers from seeking out new therapies. So, again, these folks live in the real world, these judges, so hopefully, they’ll be receptive to the real world consequences of their ruling.

Zoe Rothblatt  14:34

Well, that’s right. That’s what’s scary, too, right. It’s not just attacking a current drug. It also has implications for innovation and just uncertainty for the entire biopharma industry for years to come if this is actually capable of going through.

Steven Newmark  14:48

Right. Yeah, it’s scary. Knock on wood. You know, we’ll certainly keep our eyes on This. And we’ll see where it goes. As I said, it’s likely to end up all the way to Supreme Court.

Zoe Rothblatt  14:56

In a scenario like this is there anything that we can do, just as a patient, as a person, like who can we call when something goes to the Supreme Court like this?

Steven Newmark  15:06

Sure. Well, there is nothing at the Supreme Court. So there’s no one to call right now. I think we’re at the phase where it’s just getting educated and on what this does. Inserting your voice to elected officials is always a welcome thing. The idea that you don’t want to live in a world where you’re worried that you take certain cocktail of drugs, and you don’t want to find… you know, you don’t want to live in a world where a non-experted medical expert judge can revoke the use of those drugs is something that is scary for you. And that’s something that can be expressed, certainly to elected officials. And, you know, there may come a moment where there’s an opportunity to insert yourself in the litigation itself as an… as an amicus curiae, which means friend of the court. Those are individuals who may not be litigants in the case, plaintiff or defendant, but have, you know, some particular special concern about the outcome of how that case could affect them going forward. So that’s… that could be an area where groups like the Global Healthy Living Foundation might insert themselves and might be seeking patients to help with that.

Zoe Rothblatt  16:04

So bottom line, get educated and stay tuned. We will certainly keep our community updated and raise your voice wherever you can.

Steven Newmark  16:11

Absolutely. Absolutely. Yeah.

Zoe Rothblatt  16:14

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

Steven Newmark  16:18

I learned that our folks, our GHLF folks like to exercise so it’s good for everyone.

Zoe Rothblatt  16:23

Excellent. I almost forgot about that in the middle of all of this chaos. And you know, for me, I just learned a lot about the judicial process and all of this from you. So thank you for that debrief.

Steven Newmark  16:35

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

Zoe Rothblatt  16:44

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 check us out on YouTube. Hit that subscribe button wherever you listen. I’m Zoe Rothblatt.

Steven Newmark  16:58

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

Narrator  17:03

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

“Millions are potentially going to lose access to Medicaid what is going on?

Steven Newmark  00:13

Yeah, so during the pandemic, the government suspended procedures that would remove people from Medicaid rolls. In the past, people would regularly lose their Medicaid coverage if they started making too much money to qualify for the program or if they moved out of state.”

Steven Newmark  00:30

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  00:39

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

Steven Newmark  00:44

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

Zoe Rothblatt  00:50

Thanks everyone for your patience during our break, we are back with a new season. Season six, how exciting!

Steven Newmark  00:57

Very exciting. Thanks to all our listeners, and today we’re going to catch up on some news together, and also about some important bills that we’ve been following around the country.

Zoe Rothblatt  01:06

Yeah, so let’s start there. We’ve been busy advocating. Let’s do a: ‘Here’s what you should know’, both federally and around the states. Steven, maybe you could kick it off. I know you’re recently in D.C.

Steven Newmark  01:16

Yes, I was in Washington D.C. talking about copay accumulators with some great individuals starting with JP Summers. She is a Patient Advocate and Community Outreach Manager here at GHLF. I was also joined at the event by the Association of Women in Rheumatology or AWIR, and we were able to discuss the issue of copay accumulators and their detrimental impact on patients. Specifically, we were there to talk about a piece of legislation called the Help Copays Act, which we’re hoping will pass in Congress this year, and as a result, it would ensure that all payments made by patients or on behalf of patients are counted towards their deductible. Using accumulators is a tool that insurance companies often deploy when patients are able to use copay, coupons or have others pay for their high cost medications. It does not count towards their deductible, so it makes it harder for them to reach their deductible and thus, they continue to remain on the hook for this… for payments later in the calendar year.

Zoe Rothblatt  02:16

And what was the sense when you were there? Did you feel like the legislation could pass this year? Were the legislators overall supportive? Do people have any interesting questions?

Steven Newmark  02:26

That’s a great question. There was definitely… I think it was a combination of meeting with folks who were already strong supporters on both sides of the aisle, which is great trying to get them to push a little bit harder, meeting folks who were at the opposite end of the spectrum, not in a sense that they were not supporters, but in the sense that they were not aware of these programs, and not familiar with these programs. So it was a good first step to engage these folks on accumulators and what they do detrimentally towards patients. And then there was a cluster of folks who were sort of in the middle. They were aware of these programs, perhaps a little more educated, they hadn’t yet signed on to the legislation, and they’re interested in continuing the dialogues. So it’s a good… I’d say we’re in a good phase. Look, we have legislation that’s introduced, it’s bipartisan. Is it likely to pass? The one thing I will say in my professional career dealing with policy and advocacy is that patience is most certainly a virtue. It takes time and sometimes it takes several legislative sessions, that’s unfortunate. In certain cases, that’s actually a good thing to let legislation simmer for a bit. You know, obviously we want to pass it as quickly as possible but I think that there are still a lot of elected officials and staff who are unaware of what accumulators are, who don’t get to hear the patient perspective enough. And I think it says to us; we have more work to do. And to anyone listening, it’s important to continue to play a role and to let folks, policymakers, and elected officials know what it’s like to live with a chronic condition, and when dealing with accumulators, the affordability issues at play

Zoe Rothblatt  03:53

100%. And I mean, this one, it’s such a simple issue, but also confusing, like, you might not even know you have an accumulator. It’s like kind of hidden in there. I didn’t even realize I had one at first, and then it’s obviously so upsetting when you learn about it, and you’re paying so much money to take care of yourself. So yeah, I mean, everyone can definitely join our 50-State Network or contact your local representatives and let them know that this issue is important to you. We also had the opportunity to advocate for this Help Copays Act and the Safe Step Act, at the DDNC spring forum, so that’s the Digestive Disease National Coalition, which is always fun for us. We join every year. This year our colleague, Corey Greenblatt, Associate Director of Policy and Advocacy went and he led a few teams around to advocate for these bills and felt similarly that legislators knew the basics of these bills and it wasn’t like the 101 explaining and now we could get into deeper conversation and Corey felt like that’s always a good sign. Of course, there’s more work to be done. But the fact that there’s more comfortability among the legislative offices with these bills is really exciting for us.

Steven Newmark  05:00

For sure, it’s great work that we’re doing around the 50 states, and it’s good to get out there. And with DDNC that was a great opportunity for us to join with a coalition of other like-minded groups and continue to inform elected officials and their staffs about what’s happening with chronically ill individuals and how some of this legislation can help.

Zoe Rothblatt  05:16

And then around the States, we’ve been pretty active. JP, you mentioned before, she was able to testify in Austin, Texas for, you know, similarly, about co pays, but this time on the state level, so she was able to share perspective as an advocate from GHLF. But also as someone who experienced co pays herself and it just always powerful to hear directly from patients.

Steven Newmark  05:40

Yeah, absolutely. And in Texas, there is legislation at the state level that is working its way through the House Select Committee. So hopefully, we’ll get some news to report out of there.

Zoe Rothblatt  05:50

I hope so too. And then some West Coast advocacy that we’ve been involved in. Our colleagues did a little advocacy road trip with some patient advocates going to Washington, Oregon and California. Unfortunately, both the bills in Washington and Oregon died in session. But like we said before, it’s good to lay a foundation. Patience is important, stuff can get reintroduced. So one of those in Oregon was focused on copay accumulator adjusters, and then the other one in Washington was focused on Share The Savings. I’m not sure if we mentioned this so much on the podcast, so it might be worth a quick summary of what that means. It basically requires that patients benefit from the savings that insurers receive from manufacturers. So this bill specifically would require that at least 75% of the rebates and fees negotiated by insurers and pharmacy benefit managers are passed on to patients. Ultimately, this helps reduce financial burden and protect access to affordable medications.

Steven Newmark  06:47

Yeah, excellent. No, that’s great. Unfortunately, we need more legislation like this. And it takes a lot of work to keep pushing ahead. I know these issues can sound esoteric, they can be tough to wrap your head around. And you know, that’s why we have to keep fighting.

Zoe Rothblatt  07:01

Yeah. And then in California, we focused on a legislation that helps again with copay accumulator adjusters. And what was so interesting was that two different legislative offices said that with GHLF coming with patients, it was the first time they ever heard directly from patients about these bills. So like you’re saying; more work to be done.

Steven Newmark  07:22

I mean, that’s incredible. And that really speaks to the work of GHLF in bringing patients to state capitals, to Washington, to meet directly with legislators. There is nothing more powerful for a legislator than to hear directly from person impacted by a piece of legislation. And in our case, there’s nothing more powerful than hearing directly from a patient. So it’s great that our 50-State Network members can join us when we try to advocate around the 50 states and in Washington.

Zoe Rothblatt  07:50

Exactly. It brings it back down to the individual. And that’s what we’re all about: making sure patients feel good. So let’s transition a little bit. That was our recap what’s going on around the states advocating, but there’s also some insurance things been going on the past few weeks.

Steven Newmark  08:07

Some bad news going on actually. I don’t want to talk about it.

Zoe Rothblatt  08:11

I know.

Steven Newmark  08:11

But let’s do it. Let’s do it. We have to.

Zoe Rothblatt  08:13

Okay, so the first on our agenda is Medicaid. Millions are potentially going to lose access to Medicaid. What is going on?

Steven Newmark  08:21

Yeah, so in simplest terms, during the pandemic, the government suspended procedures that would remove people from Medicaid rolls. In the past, people would regularly lose their Medicaid coverage if they started making too much money to qualify for the program, or if they moved out of state. This was somewhat common for people who are… they call them on the bubble, where any given year they might be above or below the threshold. It’s almost ironically a disincentive sometimes to earn more money. But during the pandemic, these procedures were removed, so folks wouldn’t have to worry about that and get kicked off the rolls.

Zoe Rothblatt  08:52

And in fact, during the pandemic, because this was removed, or I guess… we can assume because this was removed, Medicaid enrollment grew by 5 million people between 2020 and 2022. So that’s a lot of people who are on it and could potentially be losing coverage, maybe even more than that. And it’s already starting to happen around some states. I think we’re going to see more throughout April. The good news is that not all ineligible people will be dropped at once. States have different timelines. Most states are expected to take between nine months and a full year to complete this verification process. So there’s a good amount of time to check in on what’s happening.

Steven Newmark  09:33

Yeah, and check in is really the operative phrase there because many people are not being notified about this until it’s happening. And we could end up in limbo in with these individuals with no insurance, because they make too much for Medicaid, but they don’t make enough to get subsidies for the Affordable Care Act.

Zoe Rothblatt  09:51

So you know, what can you do if you’re on Medicaid; look out for the renewal form and any notifications whether it’s mail, phone, text, email. You have 30 days to fill out the form. So definitely keep an eye out to see if you’ve received any of those or we’ll be receiving soon.

Steven Newmark  10:07

Yeah, absolutely. And if you are removed, other options that you have, you know, potentially employer-based insurance, if that’s an option, you have the Affordable Care Act marketplace, including all the subsidies to help you afford different plans. You should note that your child may still be eligible under CHIP. That’s the Children’s Health Insurance Program. And there’s a special enrollment for people who are dropped from Medicaid, which started on March 31, and will last through July 31, 2024. And you can apply for coverage 60 days before your Medicaid is scheduled to end.

Zoe Rothblatt  10:38

Yeah, well that’s good to know because hopefully, that’ll stop some people from ending up in limbo. Obviously, we talk about this all the time, like insurance is so important. Regularly… but especially when you have a chronic illness and we take you know, prescriptions regularly, see our doctors regularly, it’s… Insurance is a lifeline, and it’s scary to potentially lose that access. Hopefully, there’s enough supports out there that people can get a new plan. And if you do change plans, I know you guys know this, but always remember to check your doctor coverage and prescription coverage to make sure that you’ll be able to continue your care as you were.

Steven Newmark  11:13

Definitely. There were some other news as well, regarding the Affordable Care Act, and specifically the provision in the Affordable Care Act about preventive health care. A federal judge in Texas ruled that employers cannot be required to cover specified preventive health services under the Affordable Care Act.

Zoe Rothblatt  11:30

I know. This was like so surprising to me, I thought we were done attacking the ACA, but apparently not.

Steven Newmark  11:36

Right. Well, this is one of the most popular provisions of the ACA, if you will, the idea that insurance coverage is required to cover certain preventive health screenings. You know, it’s important for folks who are healthy and folks who are not healthy to get preventive care and get regular checkups. And you know, so we’ll see what kind of damage this does. The Biden administration is appealing that decision and the case is now on its way to the Fifth Circuit Court of Appeals.

Zoe Rothblatt  12:01

So we’ll wait to hear more news. We don’t know the full extent of the impact, especially as it gets appealed. But it could limit access to keep running of services, you know, aimed at early detection of disease, like lung and colorectal cancer, depression, hypertension, a lot of these are comorbidities for people in our community who live with various chronic diseases. And it’s just really hard to learn that these services that were free now, while they still may be offered, they just might have a co-pay or deductible attached to them.

Steven Newmark  12:32

Yeah, and let’s not forget insurance plans still have the option, of course to cover these services for free. But without this in place, they may start charging co-pays and cut into deductibles. So something to think about.

Zoe Rothblatt  12:43

Definitely. Well, you know, we’ll keep everyone informed on these insurance issues and around the states.

Zoe Rothblatt  12:50

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

Steven Newmark  12:53

Well, I didn’t know that we… we apparently were the first group to bring patients at the California state legislature or at least to the specific offices that we got to visit. So it just shows a great work that we are doing here.

Zoe Rothblatt  13:05

And I learned from you a bit more about what’s going on with Medicaid enrollment and why people may be losing access.

Steven Newmark  13:13

Well, we hope that you’ll learn something too. We also want to mention; check out all of our great podcasts at GHLF. A specific one we’ll talk about is Talking Head Pain hosted by our friend Joe Coe where he interviews neurology experts and people living with migraine.

Zoe Rothblatt  13:27

Definitely, check it out. 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 check us out on YouTube. I’m Zoe Rothblatt.

Steven Newmark  13:40

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

Narrator  13:45

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  00:09

Early on, I felt like there was a high level of concern for the community, for others, people masking up for others for those in the community who have chronic disease, who are elderly. And that seems to have just gone by the wayside.

Steven Newmark  00:24

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  00:33

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

Steven Newmark  00:38

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  00:44

Today, we’re gonna discuss COVID and where we’re at now, since it’s been three years since the World Health Organization declared COVID a pandemic. Pretty hard to believe. First, we do have a news update.

Steven Newmark  00:56

First of all three years, okay,  feels like three decades. But okay, but you mentioned a news update. Last week in a recent episode, we discussed the Cochrane review on masking and how the findings were misleading. And that it made it seem as though masks were not effective. Cochrane has now revised their summary owning up to the fact that their wording was misleading.

Zoe Rothblatt  01:17

Yeah, they basically explained that the review examined whether interventions to promote mask wearing helped slow the spread of respiratory viruses. So COVID and flu. And then, you know, they said, given the limitations in the evidence, the review is not able to, you know, make a conclusion on the question of whether mass wearing itself reduces people’s risk of contracting or spreading respiratory viruses, just you know, if they were looking at whether masks were promoted if people wore them.

Steven Newmark  01:48

Right, and that’s basically what we discussed a few episodes back. Essentially, what we learned from the Cochrane Review is that, especially before the pandemic, distributing masks did not lead people to wear them, which is why their effect on transmission could not be confidently evaluated.

Zoe Rothblatt  02:02

That rings true here, you know, it was hard to get people to wear a mask, even I see free masks out there sometimes and signs and people aren’t wearing them. So I guess, to me, that conclusion makes sense.

Steven Newmark  02:15

Yeah. And that’s during the pandemic, post pandemic, whatever your you know, when masking became somewhat normal, so you can only imagine what it was like trying to distribute and get people to wear masks in the before times. In fact, not so funny story. I remember traveling on an airline in February of 2020, you know, when the word COVID was in the ether, but not fully out there. A guy came on the plane with a mask. And I remember thinking to myself, “What a weirdo.” Shame on me, that’s where we were three years and one month ago, if you will.

Zoe Rothblatt  02:47

Yeah, that’s where we were. I remember, like starting to see people wipe things down. And I’m like, “Okay, maybe should I do that? That’s a little weird.” And it’s like, now you look at at where we’ve come through years later. And it’s a totally different mindset.

Steven Newmark  03:03

Right, right. Well, you know, that brings us to our topic for today, just discussing where we are, we’re at the three year anniversary, whatever you want to call it, of when COVID was declared a World Health pandemic. And we talked about this last year for COVID at year two, we mentioned the things that have changed or were brought to light during the COVID. And it wasn’t all bad. We got telehealth, for example.

Zoe Rothblatt  03:25

I haven’t used telehealth recently, but I’m like so glad that we still have the option there. I’m worried about what’s to come in May when the health emergency ends, we’ll see how that affects providers. I know one of my friends got a message from her provider saying that, you know, when the health emergency ends in May, and they won’t be able to do telehealth anymore. So you know, there’s a lot to see on that in the coming months.

Steven Newmark  03:49

Absolutely. We learn new lingo things like zoom fatigue, social bubbles, six feet, social distancing, and in potentially positive we learn to enjoy outdoor dining. Depending on your take. I don’t know how you feel about that.

Zoe Rothblatt  04:03

I mean, I remember in New York, they set up these like great establishments outside just like brought the city to life to have that so yeah, there were some good things. There was also some negatives negatives to say the least. Yeah, right. COVID really highlighted the glaring health disparities in our system. We saw who was getting sicker and hospitalized from marginalized communities, our mental health has certainly suffered. It’s been a long three years and I know we say like it’s hard to believe it’s three years and then that time has gone by but it’s also had a huge impact on our communities mental health and you know, the public generally.

Steven Newmark  04:40

Yea, no know, for sure our mental health is definitely suffered. I guess one positive to that, if I may turn that is that I think we’re more aware of our mental health than we were three years ago. So hopefully, we can address those issues better than we might have been able to pre pandemic.

Zoe Rothblatt  04:56

I think so too. And then ultimately, you know, we got vaccines, treatments, rapid tests; a lot of innovation.

Steven Newmark  05:02

Yeah, the medical and scientific communities really came together. And dare I say, saved us through the vaccines through their treatments through rapid tests. And then it was, you know, great to see the marshaling of those resources and, and what can be done when you put your mind to it.

Zoe Rothblatt  05:16

So where are we at now, the death toll is nearing 7 million worldwide and 1.1 million deaths in the US. Um, you know, I saw an interesting statistic from the Wall Street Journal, the virus ranked as the nation’s third leading cause of death in 2020, and 2021. Right behind heart disease and cancer.

Steven Newmark  05:35

Yeah. And infectious disease hasn’t ranked that high, since the combination of pneumonia and flu 85 years ago,

Zoe Rothblatt  05:41

Wow. COVID just become a part of our everyday life. And sometimes I just find it important to look at these statistics. And remember that you know, those 7 million deaths are each a person that has a family and loved ones out there. And, you know, it is really serious. And when you say, you know, something as ranked as high since 85 years ago, like it really is a stark reminder of the impact of COVID.

Steven Newmark  06:06

Yeah, absolutely. But let’s also remember that vaccines, as well as past infections, have less than a threat right now. People are getting less severe illnesses on a whole compared to where we were two years ago, three years ago, of course,

Zoe Rothblatt  06:18

Yeah. And that’s definitely a positive, I would say that we still have a lot of questions about how the virus behaves, its mutations and long term effects. And while we do have vaccines and treatment, you know, we’re still learning a lot.

Steven Newmark  06:31

Yeah, no, absolutely. And you mentioned mutations, one, knock on wood, please, please, please knock on wood. We’re still in the Omicron phase, and it has not mutated out of Omicron, thankfully, which is good. But of course, there’s always that threat.

Zoe Rothblatt  06:46

I know, do not threaten me with that COVID, our mental health can’t handle it. You know, I thought it would be a little interesting to look at the flu for a minute. I was like, what happened there in the end? And how did we get out of it? Or how did it become, you know, the way it is today. So just a quick timeline, the influenza pandemic lasted 1918 to 20. And it wasn’t until the 30s and 40s, that researchers were studying the flu viruses and developed flu vaccines. At this time, it was mainly military members that could get the vaccine first. And then ultimately, in 1945, the first flu vaccines were approved for people who were in the military. And I just thought that timeline was so interesting, because when you think about like COVID, hit 2020. At December 2020, health care workers are getting vaccines, right? It’s right. It’s like incredible what we’ve done.

Steven Newmark  07:40

Yeah, it’s incredible how much faster we’re able to respond. That’s that’s certainly something to be positive about based on the flu curve. As you mentioned, we’re way ahead of that curve. And you know, it look, it took decades to figure out the vaccines, it took a while also to figure out the seasonal nature of the flu. Right, you know, and the system for predicting flu is still not perfect. It’s far from it. But you know, hopefully with more scientists and virologists working their magic, we can get better production as the years go on.

Zoe Rothblatt  08:09

Yeah. And I guess I learned from this that like, it can take time, you know, scientists are really working on this. And while it may feel like we might be behind the curve with COVID, because we don’t know the patterns yet. Like, it just might take some time to figure out but this brought me comfort that it will get figured out just looking at the pattern of flu and the timeline and that history.

Steven Newmark  08:32

Yeah, I agree with that. I think it will get out, you know, get figured out. It’ll be a normal part of our lives the way flu is a normal part of our lives. And you know, we’re not at that stage yet. But we’re also not at the phase we were in one year ago, two years ago, three years ago.

Zoe Rothblatt  08:44

I know, it’s good. We’re not at that phase. It’s hard to think back on it.

Steven Newmark  08:49

I know. I try not to.

Zoe Rothblatt  08:50

So what our vaccine rates looking like in the US right now?

Steven Newmark  08:56

Well, according to the CDC, only 16% of United States have received the bi-vaillant booster shot. The majority who got it are in the 65 and over group or almost 42% of that age group got the booster. That compares to only the primary series by comparison. 69% completed the primary series of the first few shots.

Zoe Rothblatt  09:15

That’s a huge lag off, 69 to 16%.

Steven Newmark  09:20

Yes, it is. Don’t forget, a lot of people even who have been vaccinated, still contracted COVID. So that’s I’m oversimplifying, I could do that. Because I’m not a doctor. It’s almost like getting a booster if you will to have contracted it. But yeah, it is a big drop off. I think there was definitely less of a push for the bi-vaillant boosters, there was definitely fatigue and, you know, the anti vaccine voices are loud. And you know, there are more than a few who will say, “Look, I’ll do I’ll do the first two, but that’s it. I’m stopping there.” So we’ll see. We’ll see where that goes when it comes to the similarities with the flu vaccine and going forward.

Zoe Rothblatt  09:55

I was about to say that I’m curious if once it becomes an annual shot and this regular thing if rates go up and people are more willing to just get the annual shot, because when you look at flu shot rates, it’s similar to last year, it’s at around 47% this year, 44% last year. It’s interesting that that number is so much higher than the people getting the bi-vaillant booster shot.

Steven Newmark  10:22

Yeah, I mean, again, it probably has, there’s so many factors at play. One is that the flu vaccine has been around as maybe more part of that your normal course, your annual course. It probably has something to do with the idea that the people believe the flu vaccine perhaps has been tested more, if you will, even though it’s not necessarily accurate, but it’s been around longer. And it probably has something to do with as I mentioned, earlier, folks have contracted COVID, even after getting the vaccine, so they felt that there was some protection that they had built in.

Zoe Rothblatt  10:54

I got COVID I hope I’m super protected now against these new.

Steven Newmark  10:58

Ah, yeah, well, they say the ultimate protection is, I don’t have it in front of me these studies, but they do say the ultimate protection is the combination of the vaccine and an infection is the highest level.

Zoe Rothblatt  11:09

Yeah, I get that memory like deep in your body. Never forget this virus and.

Steven Newmark  11:14

Right, right, that’s a good thing in some strange way that you had it and you’re fine. I had it and I’m fine. You know, we’ll see what happens. I also sometimes do wonder, by the way, I don’t know about you, but you had it more recently than me. I sometimes wonder whether I’ve contracted it and didn’t know it. Since then. If my body was so ready to fight that it came, my body knew what was going on, and took care of it.

Zoe Rothblatt  11:35

Sometimes I play that game like is it my chronic illness? Or did I catch COVID? The flu? Is it allergies? Symptoms can get you thinking like so deep and wide.

Steven Newmark  11:47

Definitely, definitely. Frankly, I think it’s more than a 50% chance it invaded my body at least a second more than once a second time, if that makes sense.

Zoe Rothblatt  11:56

Yeah. You know, whatever helps you sleep at night. I know, we just mentioned mental health, it’s like, I have to believe that that infection helped give me antibodies. Oh, for sure. You know, speaking of just like mental health, our community, we can’t stress this enough that people in our community are still feeling ignored, whether it be by society, friends and family. We get a lot of messages in our COVID Support Program asking, you know, for help about how they can be with family in a safe way, and that they’re feeling a little pressured. And you also get messages that people sometimes feel ignored by their doctors, you know, the health care facilities, a lot of them are removing masks now and people in our community are asking what to do in that setting and saying, “Could there be a separate waiting room for people with masks versus not masks”. And I just think it’s really important to share that concern that’s coming from people with chronic illness.

Steven Newmark  12:56

We’ve mentioned it so many times. But I think one of the sad things, results of this pandemic was early on, I felt like there was a high level of concern for the community for others, people masking up for others for those of the community who have chronic disease who are elderly, and that seems to have just gone by the wayside. It seems we’re in this every man, every person for themselves situation now, which is just sad.

Zoe Rothblatt  13:24

Yeah. And you know, aside from from that feeling, people really want specific information, you know, similar to seeking out information on your chronic disease and how it affects your life, like people really want COVID information that’s specific to someone with an autoimmune disease or chronic disease, whatever it may be. And while researchers are looking into these, it’s not talked about enough in mainstream media. And I feel like we have a really important role to report stuff like that out.

Steven Newmark  13:53

Absolutely. The last thing we should discuss is long COVID and where we are with long COVID. Well long COVID was frankly, my biggest fear by far during the pandemic once I you know, I hunkered down. I wasn’t afraid of getting sick early on, if that makes sense. I mean, I was just like everyone else was, you know, I was comfortable enough that I could get to a hospital if I needed to, but I was always afraid what would happen with what is This long, COVID thing, but we’re starting to get more and more information about long COVID, dare I say more and more comforting information, in some respects about long COVID. Because obviously, the more you know about something, I think the more you’re able to address your fears if that if that makes sense. You know, if You’re afraid of bats like Batman, the more you learn about bats, the better the better. You feel, I think.

Zoe Rothblatt  14:37

I totally agree that that was also one of my biggest fears, is long COVID especially as someone that lives with chronic illness. It’s like, yeah, you sit there like begging please don’t give me another thing to deal with.

Steven Newmark  14:51

Right, right. I mean, I think the number one thing is almost universally it’s accepted that long COVID is not a chronic illness. It’s not a lifetime thing. It doesn’t I’m not trying to minimize it by any means. But that, for me was one of my biggest fears. Who needs another chronic illness tapped on top of this? Again, not good, but not as, you know, scary, I think, as some of us had thought. And it also seems to be following pattern that other coronaviruses when it comes to the long tail of the illness.

Zoe Rothblatt  15:21

Yeah, I think it’s exactly what you said, it’s not a chronic illness, it’s these lingering symptoms, right. And it’s a little hard because there’s no clear definition or consensus generally about what long COVID is, you know, what are the symptoms included under that they really vary from like a cough to GI symptoms, it really varies. And I think that, you know, a lot of researchers are just trying to piece together all of these diverse studies and symptoms to try and figure it out.

Steven Newmark  15:52

Yeah, absolutely. I still think the worst part of long COVID and I didn’t have long COVID, as far as I know, is the profound stigmatization of people who disbelieve that long COVID is actually a thing. That’s quite, you know, unfortunate, because it is a thing and folks who contract COVID end up getting long COVID end up suffering for a lot longer than your traditional COVID suffer, if you will.

Zoe Rothblatt  16:15

And I actually saw that there could eventually be a blood test to help predict who will get long COVID for you know, these persistent symptoms by looking at certain blood protein levels. Researchers are starting to look at it. And, of course, you know, it may be different for people in our community who have different bloodwork. But yeah, that would be really cool.

Steven Newmark  16:37

Yeah, that would that is interesting. It’s always good to know your risk levels when it comes to certain things. So that’s, that’s good to know. I also actually read a study saying that the risk of long COVID drops after a second infections compared to first infections. So that’s kind of good. It’s good news. And bad news is good news that it drops. In fact, it drops apparently, very precipitously. But the bad news is the risk is not zero.

Zoe Rothblatt  16:59

Well, you know, let’s end on, I guess, a positive note. Yeah, a few things that we’ve learned in these three years, I would say number one, mRNA vaccines are safe and effective, it’s easy to forget that now, like, you know, we have this new technology. And it’s pretty remarkable that we have that.

Steven Newmark  17:16

That’s fantastic. And another thing that we learned, if we didn’t know before we now you know, there are enough studies to show that masks actually work. So if you’re concerned if you’re going out there, wear a mask, or an n95 Mask where it KN94 mask, and they work.

Zoe Rothblatt  17:32

On that note, indoor air quality matters. Better ventilation, we saw, reduces transmission. I had never, you know, given much thought to that before. But yeah, these are all just like really important public health learnings for the future.

Steven Newmark  17:47

Yeah, no, absolutely. I would also say that tracking viral evolution is key. Countries and health agencies around the world have now established genomic surveillance to track novel concerning variants. So that’s great that the world is working together to track these things.

Zoe Rothblatt  18:03

Agreed. I think that’s a great note to end on with these positives. Steven, would you learn today?

Steven Newmark  18:08

Well, I learned from you that there’s potential blood tests to determine if you might be at higher risk for long COVID. I didn’t know that. Going into today’s recording. So thanks, Zoe.

Zoe Rothblatt  18:17

Yeah, for sure. It’s great learning. I learned from you, you know, top of the episode talking about the Cochrane Review and just you know, re establishing the learnings there and the misleading could be and why.

Steven Newmark  18:31

Great. Well, we hope that you learned something, too. And before we go, we want to give a shout out to Healthcare Matters, where our colleagues, Conner and Robert, do a deep dive on health policy. Check it out, along with all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  18:47

Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, please give us a rating and write a review on Apple Podcasts. And definitely check us out on YouTube. I’m Zoe Rothblatt.

Steven Newmark  19:02

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

Narrator  19:05

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

Narrator  00:00

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

Steven Newmark  00:06

The goal is not to stop COVID entirely, it’s about the prevention of severe disease. To me, this is similar to the flu, nobody in public health rationally thinks that we can ever stop flu via vaccination in a given year. But public health officials recommend vaccinations to help slow the spread to those most vulnerable and to protect against severe disease.  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  00:41

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

Steven Newmark  00:46

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  00:52

And to help you make informed decisions, today we’re going to talk about the recent Advisory Committee on Immunization Practices. They had a meeting, and we’ll talk about what it means for our community. So let’s dive into that.

Steven Newmark  01:06

Yeah, the committee recently met and this is the CDCs external advisory group of expert scientists, and they met to discuss all vaccines. This was part of their regularly scheduled meeting, you know, in other words, these things happen with or without a pandemic. And on this particular morning, they focused on COVID-19 vaccines.

Zoe Rothblatt  01:23

So this discussion was really highly anticipated because it followed the meeting where the FDA discussed the future of boosters in the US for COVID. We talked about that recently, on an episode of The Health Advocates, we had a lot of unanswered questions, you know, will it be a bi-vaillant dose from now on instead of the primary series? Will it be an annual shot? We’re kind of left with suggestions, but up in the air.

Steven Newmark  01:47

Yeah, so some top lines from the meeting. First of all, the top top top top top top top line is that vaccines continued to be safe. There was more reassuring data presented on the safety of COVID-19 vaccines.

Zoe Rothblatt  02:00

I wish our listeners could see that I was smiling, as you said that. Always good to know that vaccines continue to be safe, especially for our community where there’s like a lot of considerations with just you know, your condition, your meds, so it’s great to hear this news.

Steven Newmark  02:15

The second what I think is a big top line is that the vast majority of COVID hospitalizations are actually for COVID-19. What I mean by that a lot of detractors say that the number of COVID hospitalizations is misleading, because it includes people who go to the hospital for some other ailment and quote unquote, happen to have COVID. But the data presented last week actually says the opposite.

Zoe Rothblatt  02:38

Okay. So you know, what does that mean exactly?

Steven Newmark  02:41

The data on hospitalizations for and with. So for means the primary reason that you entered the hospital with is a coincidental coinciding ailment that you may present with when you’re at the hospital. The vast majority of COVID-19 hospitalizations between 80 and 90% for those under age five years, and over 50 are for COVID itself. And this has not changed over time. So yes, COVID-19 is still a problem.

Zoe Rothblatt  03:06

So that’s just basically saying, you know, if I’m sick and going to the hospital for COVID, that’s more likely the case, then I have Crohn’s flare, and I happen to also test positive for COVID while I’m in the hospital. We’re saying that first case COVID’s still problem people are going into the hospital for COVID.

Steven Newmark  03:23

Right, exactly, exactly. So another big deal that jumped out at me is that for adults, 96% had at least one underlying condition. So that’s not surprising. It’s something you know, that those of us in the immunocompromised community are well aware of. Amongst kids, however, 49% had no underlying condition. So essentially, it was 50/50. That’s a really big deal. Half of the children presenting at hospitals with COVID had no underlying health conditions.

Zoe Rothblatt  03:53

And that surprised me that, you know, half of these cases of COVID hospitalizations amongst kids are with no underlying health condition. So that seems like a really big deal to me, given that we’ve said in the past that it hasn’t affected kids so strongly.

Steven Newmark  04:07

Absolutely. So something just to be aware of, to say the least. And you know, another reason why why children should get vaccinated, frankly, regardless of whether you have an underlying condition.

Zoe Rothblatt  04:16

So, you know, when we talk about adolescents, you know, the risk benefit there. I think that they talked about that there’s a lot of chatter around whether you know, the benefits of the COVID vaccines still outweigh the risks for adolescents. You know, where myocarditis is rare but still real risk. So the CDC ran a risk benefit analysis on the bi-vaillant boosters. And what they found is that, you know, when they looked at for 1 million bi-vaillant vaccines given to ages 12 to 17 years old, they found that the benefits did outweigh the risks. So that’s really good to know. This is looking at bi-vaillant boosters, so it’s more recent data, which is always nice to hear.

Steven Newmark  04:57

Yeah, and we should say that the benefits described by the committee were limited to severe disease. Other benefits that they didn’t even discuss include preventing infections, generally, long COVID, days of work that were missed, reduced transmission, etc. So there are even more benefits harder to calculate, if you will.

Zoe Rothblatt  05:15

So we’re looking at this data on protection by age. Where does that lead us for older adults?

Steven Newmark  05:22

Well, older adults were vaccinated in September are coming up on six months on post vaccine. So do they need another vaccine? Or do they wait until the fall like everyone else. It’s clear that protection does wane. You know, it’s unclear as to where we’re going in terms of trying to increase the dosage or decrease, if you will, the time between dosages.

Zoe Rothblatt  05:41

Right. And it’s also an interesting time right now, because we’re headed into spring in the northern hemisphere, which is typically when you know, COVID cases start to go down. So I guess like our immunity would be waning, as the cases are waiting too. So it’s just interesting to see about how, you know, we’ll move forward, whether it’s an annual dose or whatever, but I did see in the meeting that, you know, the CDC clarified the ultimate goal of vaccines is prevention of severe disease, which that’s what they’re doing.

Steven Newmark  06:13

And I think this is an important point that sometimes gets lost. The goal is not to stop COVID entirely, it’s about the prevention of severe disease. To me, this is similar to the flu, nobody in public health rationally thinks that we can ever stop flu via vaccination in a given year. But public health officials recommend vaccinations to help slow the spread to those most vulnerable and to protect against severe disease

Zoe Rothblatt  06:39

Because of this concept that you know, we’re preventing severe disease and it is working in that sense, the committee decided there was insufficient evidence right now to suggest that older adults and immunocompromised need another bi-valiant booster at this time. They did say that could change in the future based on a few things. So the first hospitalization rates among those who got the bi-valiant booster start to increase if we see that, that may be pointing to a reason to get another shot. Other signals of waning vaccine effectiveness of bi-vaillant vaccines and COVID significantly mutates of course, that would be you know, a reason to take a look at when the next dose should be. But as for right now, it seems like the recommendations are that that everyone will be eligible for one shot per year.

Steven Newmark  07:27

Yep. But as we’ve learned, we have to be flexible as this could change. And we you know, we’ll see where we go next.

Zoe Rothblatt  07:32

That’s been the motto the whole pandemic, right, like we know our protective things, you know, handwashing, masking, distancing vaccines, but ultimately, it’s like, we’ll see where we go next. With each season brings a new wave of either relief or concerns. You know, we got relief this year when it stayed in the Omicron lineage and we didn’t get a new original variant. But then again, we got these ones in lineage that that were more transmissible. So it really is about watching and waiting and trusting in the experts that they will lead us in the right direction.

Steven Newmark  08:06

Absolutely. So stay tuned. And it was a good meeting, we learned some interesting stuff. And we’ll keep our ears to the ground again to see what else comes of it.

Zoe Rothblatt  08:15

Well, Steven, that brings us to the close of our show. But did you learn today from the committee?

Steven Newmark  08:20

Well, I learned a lot. I think the most important thing I learned from the committee, for me, is that the vast majority of COVID hospitalizations are for COVID. I was surprised I actually bought into the idea that a lot of the hospitalization numbers in dealing with COVID were for folks who actually presented with something else and turned out that they had COVID.

Zoe Rothblatt  08:39

And for me, it was a good reminder that the ultimate goal of vaccines is to stop severe disease. I think like I say that a lot. But it’s it’s tough to internalize it because we do get caught up in you know, testing positive and what does that mean, but it really is helpful to know that that in this committee, they’re determining that the vaccines are doing their job at stopping severe disease.

Steven Newmark  09:01

Well, we hope that you learn something too. And before we go, we’d like to shout out to Healthcare Matters hosted by our colleagues, Conner and Robert where they do a deep dive on health policy. Check it out, along with all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  09:16

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 check us out on YouTube. I’m Zoe Rothblatt.

Steven Newmark  09:31

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

Narrator  09:34

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

Narrator  00:00

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

Steven Newmark  00:06

Based on the studies that are out there in controlled environments when individuals are masked properly, it does help stop the spread and it certainly protects those who are wearing the masks.  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  00:33

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

Steven Newmark  00:37

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 will talk about a new study about the effectiveness of masks and break down its conclusion and what it means for our community.

Zoe Rothblatt  00:49

I’m really excited to dive into that topic with you, Steven. First, we do have a few COVID infectious disease related news updates. The first on our list is this lab leak theory.

Steven Newmark  01:00

Yeah, I don’t think we can really call it a theory anymore. Or maybe we still can. But several US agencies, including the Department of Energy and the FBI, now say that Coronavirus pandemic was likely caused by a leak at a laboratory in Wuhan.

Zoe Rothblatt  01:17

You know, this adds to previous intelligence that in 2021, a few other intelligence agencies said that, you know, with low confidence, they thought the virus emerged through natural transmission, you know, which would be whether it’s through the market or just jumping around, but they had low confidence. And now it seems like we’re getting new information that it did come out of a lab. We weren’t told what the new information is. It’s just that now that’s leaning towards that this is the true origin, which you know, what does this mean for the future is the big question, right?

Steven Newmark  01:50

First thing we should say is we’ll probably never know definitively where this started, because it’s been three years, and China is not allowing any foreign agencies to actually go and inspect and to try and learn the truth of the origins. But the closer we come to learning where the virus originated, the better we can do in the future to help contain viruses generally speaking.

Zoe Rothblatt  02:12

Exactly and be proactive about how to protect ourselves, especially for our community, who it’s so important. I mean, it’s important for everyone to stay safe, but especially for our community, it’s helpful to be proactive about health.

Steven Newmark  02:24

Absolutely, absolutely. So we continue to learn more, we’ve spoken about it on this podcast, the idea that it came from a laboratory that happens to be situated in Wuhan, I don’t think should come as a total shock to most folks, even despite the transience of China in allowing inspectors in. Hopefully, we will continue to learn more about the origins.

Zoe Rothblatt  02:43

Next up on our news lists we have the FDA authorized the first over the counter at home test for flu and COVID. This is really exciting.

Steven Newmark  02:52

Yeah, that is great. It’s funny, that’s one of the questions, we would scratch our head about, like, hey, why don’t we just have one test for both? And as best as I can recall, I don’t. I’ve never even I don’t recall ever knowing about an at home test for flu at all. Unless I’m wrong.

Zoe Rothblatt  03:07

I don’t think so.

Steven Newmark  03:08

So that’s fantastic. So if you’re feeling ill, you can now take a test and you’ll at least be able to recognize whether you have flu or COVID. And both of those are, of course, illnesses that you want to treat as quickly as possible. And for flu, we talked about it a lot less than COVID. But if you can get yourself on medications early during the course of your illness, it certainly bodes well for outcomes.

Zoe Rothblatt  03:28

And we’ll have to see how this is covered by insurance. I couldn’t find any information yet, because it’s so new. We’ll keep everyone updated as we learn that.

Steven Newmark  03:37

What gets even crazier, the company that produced the actual test filed for bankruptcy. So, so so it’s we’re not exactly, we don’t exactly have the tests ready to go. But certainly we should knock on wood by next flu season.

Zoe Rothblatt  03:52

Yeah, I was about to say hopefully for next flu season, we can be using these.

Steven Newmark  03:57

Yeah, that will be great. And in terms of obtaining them through insurance or whatnot, TBD.

Zoe Rothblatt  04:02

And lastly, big news this week in a narrow vote that FDA advisors recommended that the agency approves the country’s first RSV vaccine, and this would be for people ages 60 years old and up.

Steven Newmark  04:15

That’s more good news that there’s a vaccine out there that will certainly be out into the public. The vote was close, as you said it was seven to four with one abstention. But you know, we will soon have a single dose shot that has been shown to reduce the risk of illness from RSV by 86%.

Zoe Rothblatt  04:31

That sounds pretty great to me. 86%, I’ll take it except obviously I’m not 60 and up, we’ll see what happens for immunocompromised. I bet that that’ll be you know, the next group that they focus on. But as we’ve seen these vaccines get rolled out with certain groups in mind first with how the studies go.

Steven Newmark  04:48

So we’ll see how that goes. The Advisory Committee has also made about another RSV vaccine for older adults, more vaccines that are out there to help the better and certainly the more likely that some of these might get approval down the road or in short order for the immunocompromised population as well.

Zoe Rothblatt  05:04

Now, if only we can combine all these into one vaccine not only go to the pharmacy, but it’s better to make some trips than get sick.

Steven Newmark  05:13

Better to live today than 100 years ago. So be grateful for what we have.

Zoe Rothblatt  05:17

That is true. I am grateful that aside from vaccines, biologics exists now and keep me healthy and our community healthy. There’s a lot of great advancements. Let’s dive into our big story. Do masks work? There’s a new study that seems to show that masks don’t help stop the spread of COVID. This was like super alarming when I read it. You know, I was just really surprised when I learned about this. And I was thinking has everything we’ve been told and learned about this whole time getting unraveled now?

Steven Newmark  05:48

I wouldn’t say it’s getting unraveled. But there’s certainly been a study that came out called the Cochrane Study and it’s a very reputable source. In fact, for medical questions, they are a major source of high quality meta analysis. They’re a UK based nonprofit that publishes long and comprehensive analysis of current evidence on medical and therapeutic interventions. Generally speaking, to boil it down, they kind of aggregate existing studies to produce reviews that are frequently called the gold standard. This study concluded and I’m quoting, “wearing masks in the community probably makes little or no difference to the outcome of laboratory confirmed influenza/SARS-CoV-2 compared to not wearing masks,” that was their official statement.

Zoe Rothblatt  06:32

Okay, lots of confusion. When I hear that, yes, it seems to undo everything we’ve learned. But what’s important is that this was a meta analysis, right? “ooked at a lot of studies.

Steven Newmark  06:44

78 to be exact.

Zoe Rothblatt  06:45

So let’s dive into that. What did they actually look at? And how did they get to this conclusion?

Steven Newmark  06:51

Okay, so that’s a good question. So first of all, they looked at 78 studies, only six were actually conducted during the COVID 19 pandemic.

Zoe Rothblatt  06:59

Wait, hang on, only 6 of the 78 were during COVID. But the conclusion is about masks makes little to no difference for COVID?

Steven Newmark  07:10

For COVID and flu, correct, Okay. In fact, the majority of the studies looked at flu transmission under normal conditions, and many of them are about other interventions like hand washing, not about mask wearing. Only two of the studies were specifically about COVID and masking in particular. And furthermore, neither of those two studies look directly at whether people actually wear masks. But instead, whether people were encouraged or told to wear masks by the researchers. If telling people to wear masks doesn’t lead to reduce infections, it could of course be that masks don’t work. Or it could just be that people don’t wear the masks when they’re told to or they’re just not wearing them properly.

Zoe Rothblatt  07:48

Which we’ve learned about that in the pandemic. But you know, what I’m hearing here is that that conclusion, when you dive a little bit deeper, it’s not what it seems, because very few studies were about COVID.

Steven Newmark  08:01

Right.

Zoe Rothblatt  08:02

You know, somewhere about the flu. So maybe we can make a link there but unclear about COVID. And, you know, very, very few of them, he said two only looked at masking and it wasn’t even a strong study about you know, do masks work, it was more about feelings and attitudes towards mask if I’m getting this right.

Steven Newmark  08:21

Right, exactly. So people want to know a very simple answer to what should be a simple question does wearing a mask work? But that’s a very loaded question. What does work mean? What kind of a mask are you talking about? During what period of transmission? You know, is the individual shedding at a high rate at that particular moment? What is the disease? Are we talking about influenza? Are we talking about COVID? Are we talking about a different virus altogether? And what social context? How close are you? Are you within six feet of another individual, three feet of another individual? What’s the age factor situation? Are you indoors? Are you outdoors? So there are so many questions. You know, I would just sort of come back to this, do you masks work against COVID 19? I would start almost by asking a physics question. Can a masks physically stop droplets and aerosols from coming in and going out? In other words, calling out when you are sick and shedding and can spread a virus and coming in to protect yourself when wearing it?

Zoe Rothblatt  09:22

Okay. Yes, important question. And it’s a little confusing, right? Because we’ve heard a lot over the course of the pandemic. If we go way back to March 2020, we were told not to wear masks, in part because there was a shortage of PPE and we needed to save it for our essential workers. Then, you know, it was like any cloth mask could be good. Later, we learned that that might not be as effective and we really need an N95, KN95, you know, a tighter fitting stronger mask. So where are we today? How do we answer that physics questions, Steven you know, is that true do masks stop these aerosols from coming in?

Steven Newmark  09:59

For the specific experiments, scientists place test subjects in a very tightly controlled environments with equipment that precisely measures the number of particles that were released when wearing a mask or inhaled while wearing different masks. And they inhale them while doing different things while whispering while coughing while laughing to get different variations. And multiple studies have shown that masks help protect the person wearing the mask against COVID-19. In other words, they reduced the number of particles inhaled by someone. Also, the masks reduced the number of particles emitted by a person. One study, in fact found that surgical masks and KN95 masks reduce the outward particle emissions by 90%, or at least 75% in some cases. So when worn properly, masks do prevent emission from individuals that are shedding. And they do prevent inhalation for individuals that are trying to protect themselves.

Zoe Rothblatt  10:56

So it seems like from this, I’m gathering that masks work on an individual level, you know, to help just person to person oftentimes we talk a lot about the population level and public health in that sense. But it seems like this study is proving that even if you as an individual wearing a mask, and especially if the other individual you’re talking to is wearing a mask, it really does reduce what you inhale and what you would emit.

Steven Newmark  11:20

For the most part. And I say for the most part, because, you know, these are studies that are done in tightly controlled environments, which are very different from the real world. In the real world, too many people, of course, don’t wear masks at all. As an example, if you’re in a crowded subway car were very few people are masked and a bunch of them have a virus and are shedding and are coughing, your protection may be limited. Those who do wear masks don’t always wear the proper masks or the highest level of protection, the N95 masks, KN95 masks. Even when wearing masks, folks don’t always wear them properly to get the proper seal. So within the real world, the conditions are quite different. But yes, based on the studies that are out there, in controlled environments, when individuals are masked, properly, it does help stop the spread. And it certainly protects those who are wearing the masks.

Zoe Rothblatt  12:12

So you know, linking this back to that study we were talking about at the top that had a different conclusion, I wish they would have looked at this and seen how this would have altered their results. If they included this study, you always have to look deeper at what’s going on. Because this is a study that’s actually looking at the effectiveness of masks and how aerosols and droplets transmit whereas that meta analysis didn’t look at that.

Steven Newmark  12:38

Correct. Correct. Correct. Because they were looking also don’t forget, they were looking mostly at non COVID-19 viruses, they were looking particularly influenza, which is different. And they were looking at a lot of studies that took place in the real world where it’s hard to get a gauge on on how folks were wearing the masks, and not to mention what kind of masks they were wearing.

Zoe Rothblatt  12:57

I feel like we still have some unanswered questions.

Steven Newmark  12:59

Some?

Zoe Rothblatt  13:02

Well, I mean, we’re going almost three years into the pandemic, I think we’re hitting that mark, but it’s just like, you know, do masks work on an individual level? Do they work on a population level? How do we know what the right mask is? What happens if you don’t have that right fit that you were talking about and there’s leakage? Which is a lot of these questions come to mind. And does it lead to less severe disease, if you are wearing a mask?

Steven Newmark  13:27

I’m a big proponent without any scientific evidence of the last one, the idea that, you know, if nothing else, my hope in wearing a mask is that I will inhale less of the virus and have a smaller viral load, which would lead to either if I were to get infected, either an asymptomatic infection or less severity of an infection. So it’s sort of like, I don’t know, like a strainer? I don’t know what that I don’t know how to describe it.

Zoe Rothblatt  13:53

Like explaining the stuff at the top of your soup.

Steven Newmark  13:57

Right, right. But we don’t have anything definitive that says, you know, I could be, you know, what, that what I’m doing is actually protecting for that particular instance. You know, I think ultimately, the main problem with taking too much out of the Cochrane Review is is is just that too many people in the real world were not masked properly. And it’s hard to extrapolate that because people were not masked properly, that the virus spread. And as a result, we shouldn’t encourage masking any means.

Zoe Rothblatt  14:30

Wait, can you explain that last part?

Steven Newmark  14:32

Well, you know, basically, you don’t want to I think it’s dangerous to say the top line takeaway is that masks don’t work because study after study shows that they do help to decrease the spread when worn properly. They do help to protect the individual on an individual level when worn properly. And if you care about others, if you’re not sick, you help to stop the spread if you have an asymptomatic infection, or if you actually know that you’re sick, you certainly should be matched up if you have to be outside. You know, I don’t think too much can be put into this. Look, the bottom line when you go to get surgery, do you see people wearing masks?

Zoe Rothblatt  15:09

Yeah, I would be terrified if they weren’t. Right.

Steven Newmark  15:12

Right. Exactly. And they would be to they’re doing it for themselves. Yes. So I think the beat goes on, we still have a lot more to learn. And we’re still living the world we’re living in where those of us who want to remain masked can do so you know, I’ll continue to wear mine in public settings, I’ll continue to wear my N95 masks or which, you know, which I feel does provide robust protection when needed.

Zoe Rothblatt  15:36

I think it’s tough because it’s like, where do we go from here? You just mentioned what you’ll keep doing. And I guess at this point is become an individual thing. What’s helpful for me is to think about what we talked at the top of the episode, you know, there’s now a new test for COVID and flu, you know, there might be a new vaccine for RSV coming. And I think it’s helpful that we have all these other supports outside of masking and they can all come together to help us feel safer.

Steven Newmark  16:05

Right. Absolutely. Absolutely. You know, we’d love to hear from you. I’m curious what our listeners think on this subject. We’ll keep reporting what we know until we hear otherwise, as the studies keep showing the efficacy and safety in wearing masks, we’ll continue encouraging folks to do that when in certain situations.

Zoe Rothblatt  16:22

Absolutely. And, you know, we know masking is so important to our community. We hear about it all the time on the internet and just through one on one conversation. So you know, do what you feel is comfortable for you. And like Steven said, we’ll we’ll keep everybody updated. Steven, that brings us to the close of our show. What’d you learn today?

Steven Newmark  16:40

I learned I guess in preparation for today, I learned about the at home over the counter test for flu and COVID. I’m excited when that’s actually available to purchase at my local Walgreens.

Zoe Rothblatt  16:52

Awesome. Yeah, me too. And I learned from you just how to do a deeper dive onto these studies that are meta analyses and like really, really dive in and see what they’re looking at and with a critical eye.

Steven Newmark  17:03

Well, we hope that you learned something too. And before we go, we want to give a shout out to Talking Head Pain, the podcast hosted by Joe Coe, featuring interviews with patients and leaders in the migraine community. Check it out along with all of our podcasts at ghlf.org/listen.

Zoe Rothblatt  17:20

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 check us out on YouTube. I’m Zoe Rothblatt.

Steven Newmark  17:34

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

Narrator  17:36

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.

Eddie Applegate  00:10

If I’m able to share my story with others in a way that can help them in a way that I didn’t have when I was first diagnosed, I thought that that would be just a great opportunity to pay it forward.

Steven Newmark  00:22

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  00:31

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

Steven Newmark  00:36

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  00:41

Today we have an interview with Eddie Applegate, we talked about Eddie’s psoriatic arthritis journey, advocating for yourself with your doctor, and also just how the chronic disease community helps support each other. It was a really great interviewer, I’m excited for you all to listen. First, we do have some news updates.

Steven Newmark  00:59

The HELP Copays Act was introduced this week in the house. The Help Ensure Lower Patient, or HELP, Copays Act to protect patients from harmful insurance and pharmacy benefit manager practices that raise out of pocket drug care costs.

Zoe Rothblatt  01:12

And this is a federal legislation that helps fill in the gaps that people are left behind. Because the state doesn’t cover everyone. Not every state has a law. And this is basically saying that if you use any money that you use towards a copay, whether it’s a copay card or you know a coupon, something from the manufacturer, or any of those will count towards your deductible. So you can help meet your deductible faster, and the insurance companies aren’t double dipping. So this is huge, because we know our community relies on regular medication.

Steven Newmark  01:46

Absolutely. This is legislation that we at GHLF have sought for many years. And I can’t emphasize enough the bipartisan nature of this legislation. I know, we hear a lot about dysfunction in Washington, particularly in Congress. But this is an area that has bipartisan support. And with that support, or hopefully it’ll get pushed through or hope it gets pushed into law.

Zoe Rothblatt  02:10

And similar to the discussions we’ve had with the Safe Step Act, this is something that’s been introduced in years past, which always is more hopeful as we gain more co sponsors on the act. And finally shout out to our colleague, JP Summers, Patient Advocate, Community Outreach Manager here at GHLF. Yes, she advocated and spoke at a Wisconsin Press Conference on the importance of this bill and how it helps patients. So thank you, JP, for all your work with the 50 State Network.

Eddie Applegate  02:38

Absolutely. Great job by JP.

Zoe Rothblatt  02:41

Our next news update is a little bit of research news. So we have some answers on protection from a previous COVID infection. This new study, it was a meta analysis, which means they analyzed 65 studies from 19 different countries, it was published in The Lancet. And what they found was that risk of hospitalization from COVID among people who were previously affected is 89 to 90% lower for at least 10 months post infection.

Steven Newmark  03:10

Yeah, excellent news for pretty much everyone. It’s great news if you have been infected, of course, but it’s also good news if you’ve not been infected, because it means that there are folks walking around who have been infected who have greater protections for themselves, which will endure to greater protections for the community as a whole.

Zoe Rothblatt  03:28

Exactly. And the study did find that protection from past infection from the earlier variants was high, but it was substantially lower for like the Omicron BA.1 lineage. And you know, obviously the study authors recommend that vaccination is still really important and the safest way to get protection, especially because vaccines also are important for you know, older adults in our community with underlying illness who really rely for those around them to have protection. You know, a vaccine is guaranteed protection versus an infection we really don’t know so much.

Steven Newmark  04:02

We also want to mention, this is our last recording in the month of February. And as we end Heart Health Month, there is a few tips that we wanted to share for you and your loved ones.

Zoe Rothblatt  04:11

Let’s hear it. It’s really interesting how much heart health overlaps with chronic illness like inflammatory arthritis, things like that. There’s such an overlap among co conditions, it’s hard to remember to consider it all. So what are the tips, Steven?

Steven Newmark  04:25

Well, some tips are as with anything else, always start with a good team. Start with your primary care doctor and add a cardiologist to the mix when it’s appropriate to talk about your heart health. You know, when you have your team assembled, make sure that you get proper heart tests to get an accurate picture of your cardiovascular health. Obviously, it’s important to make healthy food choices. The Mediterranean Diet has been found to lower the risk of heart attack, stroke, and heart failure. And stay active. Get moving, exercise can improve vascular function and reduce the risk of cardiovascular disease.

Zoe Rothblatt  04:57

Great. I mean, it’s more of the same stuff that we hear for other chronic diseases, which is good news because I might be already be doing some of it. But just adding a little bit more on shouldn’t be too much of a burden. So like I mentioned, I spoke with Eddie Applegate, we had a really great conversation about ways to just speak up for yourself along your journey. You’re whether it’s the beginning of your journey, or you’ve been living with a condition for a while, it’s always important to connect with others and get these tips. So yeah, let’s have a listen to Eddie. Good morning, Eddie. And welcome to The Health Advocates. It’s so great to have you here today.

Eddie Applegate  05:37

Good to be here this morning, Zoe.

Zoe Rothblatt  05:39

So why don’t you begin by introducing yourself. Tell our listeners a little bit about you, your diagnosis, and where you’re at today.

Eddie Applegate  05:46

My name is Eddie Applegate. I am originally from the great state of Alabama. But I’ve been living in the Atlanta, Georgia area for the past 10 years. I work with making sure commercials run correctly. So I’m I’m sorry, I guess since I’m the one that I’m responsible for some commercials and some programs. So like I said, my apologies on that one. I was diagnosed with psoriatic arthritis in it’s been about 20 years now since I was first diagnosed. And I like to say that my diagnosis story is much different than other people’s because I was actually diagnosed early the first time and by an urgent care doctor, which whenever I tell people that they’re like, “You’re kidding.” I was like, No.

Zoe Rothblatt  06:29

Yeah, my jaw dropped when I found that out.

Eddie Applegate  06:32

I mean, it’s it’s I hate that it is such an anomaly in the lore of diagnoses, but I had been having issues with pain and with stiffness. Getting in and out of a car was tough and painful. And so I finally asked my mother at one point in time, do you think that I have arthritis? And she said, I don’t know, you may but you would need to get a referral first. So that’s why I went to an urgent care just to get a referral to a rheumatologist. But I think I had the one urgent care doctor who had heard of psoriatic arthritis. I had never even heard of psoriatic arthritis, but with the symptoms on my chart, and then he looked at me and he looked at my fingernails, which had some pitting in them, and he looked at my skin, which had psoriasis on them. He said, “I know exactly what you have. You have psoriatic arthritis,” and I was able to get a referral to a rheumatologist very quickly because it was a new rheumatologist at the practice. So I didn’t even have to wait a long time, like others do to see the rheumatologist. I think within a month, I was seeing a rheumatologist and that that led on my journey of 20 plus years. Right now I am at a period of lower disease activity. So I’m very thankful for that. Thanks to good medications. I’m very happy with that. That’s my story in a in a quick little nutshell.

Zoe Rothblatt  07:59

I’m so glad to hear that you’re living with low disease activity today. That is such a win. I wanted to ask you got a quick diagnosis. What happened next? When did you start, you know, advocating and sharing your story and being open about your psoriatic arthritis?

Eddie Applegate  08:16

That was a little further down the road. I tried some medications that didn’t work, I’d even gone off of medication at some point in time because my insurance had changed or lost insurance. It’s amazing how having the right job and the right insurance affects our health care. That’s, that’s another story for another day. But that’s it’s very important. But I’d finally been in a good place medically. And I saw something with the Arthritis Foundation actually like, oh, the yearly walk, I was like, Well, you know what, you know, several years ago, would not been able to do this walk. So why not? Why not try it? And so I did a little fundraising for that. And after a few times, somebody that worked there said, “I keep noticing your name. It’s great to meet you know, if I ever have anything, I’ll let you know.” And that led to being a part of an ACR symposium one day on psoriatic arthritis from as the as the patient, there were a lot of clinicians, and then they had some patients sprinkled in there as well to get the patient point of view. And that really is what what started it. And then I met Ben Nowell from GHLF. And he’s like, “Hey, we’ve got something called Patient Governors, were still looking for some and think that you’d be good. So if you’d like to do that?” Sure. Why not? You know, I thought things are being put in my path for a reason these opportunities have been put on my path for a reason why not get a chance to speak as a patient from my point of view, because you know, a doctor can speak 24/7 but it’s different when someone who actually has the disease tells their experience. That’s much more, that hits much closer to home because when I started with psoriatic arthritis, 2003, there wasn’t a whole lot on the internet about psoriatic arthritis. There, there wasn’t social media like there is now 20 years ago, which makes me feel way older than it should. But it was that way there really wasn’t anything to it. There may have been some message boards are some people commenting on things, but there’s not what we have now. So if I’m able to share my story with others in a way that can help them in a way that I didn’t have, when I was first diagnosed, I thought that that would be just a great opportunity to pay it forward.

Zoe Rothblatt  10:33

I love that, I totally agree. It makes such a difference to hear things from other patients. As I think you know, I live with spondyloarthritis and Crohn’s disease and just opening up about my disease, I’ve had a similar experience to you where you meet people along the way that helped you and you in turn can say something that helps someone else recognize symptoms. And it just it makes such a difference having that in between the doctor’s visits, like you mentioned, you know, you go to the doctor, but what happens in between and you have this sense of community advocating with you in between, which is amazing.

Eddie Applegate  11:07

Absolutely. And I have made wonderful friends through my arthritis journey that I talk with, you know, most every day about arthritis things and about non arthritis things. But it’s good to have somebody because not everyone understands like, oh, well, the doctor told me this, or my medication is making me feel like this. The average person is not going to know what that means. So it’s good to have somebody that does know what it means. And also I found out a few friends of mine, that whenever I would post about stuff, they’ve messaged me privately and said, “Thank you for speaking about this, you know, I have psoriatic arthritis. I don’t feel comfortable speaking like you do. But I’m glad that you are speaking out and telling your story. It does mean a lot.” I was like, Wow, thank you.

Zoe Rothblatt  11:50

I think that’s so key everyone, advocates in their own way. And even just like the person that doesn’t want to share, but is reading your story that also is a form of advocacy, because they’re getting the knowledge and really trying to take control of their care. So that’s amazing. Eddie, you joined The Psoriatic Arthritis Club, another podcasts under our umbrella. And I really wanted to bring you on here to do a little crossover and talk about some of the things you mentioned on there. I was listening to your episode, and you said, “Because if you don’t say something than nothing’s going to change. If a change is needed, if you feel a change is needed, and you don’t say anything, the doctor is not going to know.” That was a really powerful quote to me and just like really highlighted to me how much you’ve advocated for yourself on your journey. Even with a quick diagnosis, it’s still may be a long road living with a chronic disease. Can you talk to us about a time you remember speaking up and a change that you felt you needed?

Eddie Applegate  12:50

Absolutely. I think that the medication that I’m on now is because I’ve advocated for myself. You can’t be shy whenever you go to the doctor’s office and go, “Oh, no, I’m fine. I’m Okay,” if you’re actually in pain, because if you say, oh, no, I’m fine. I’m not in pain. That’s what the doctors gonna believe. And if you are in pain, but you say you’re not in pain, the doctor is not, I think I’ve said before to people like, Well, the doctor is not a mind reader, you have to tell the doctor, exactly, or the nurse practitioner, or the physician’s assistant, whoever the medical professional is that you’re seeing, you have to tell them if something is wrong. I know that I kept mentioning to my rheumatologist, “Yeah, I’m having some issues in my ankle and my knee.” He said, “Well, maybe it’s time for a medication change.” He was always great to listen to me, if I was having some issues, there would be times when he would bring out his little ultrasound machine. And you know, run it over my hand, run it over my knee, just to make sure that when they are looking, see, but if you don’t say anything, nothing changed. And that goes for any situation in life, not not just on a medical situation. But any situation in life. If you don’t say anything, nothing’s going to change because people are going to think that everything is good the way that it is. So you have to you have to say something, if you feel that the medication isn’t working, if you have a new symptom, if there are some side effects to the medication, you really need to say something or else you’re going to stay where you are because the doctor will think, hey, where you are is fine. So it’s important that you do speak up so that they know, you don’t want them to say, “Oh, well, you never said that you were feeling bad. Oh, you never said that this was an issue.” Say it, put it out there. And if they don’t listen, make them listen, but at least you know that you’ve said something.

Zoe Rothblatt  14:33

So what advice do you have for others that are maybe a little bit timid to speak up? How can someone get to the place that you’ve got to where you are recognizing symptoms and saying it out loud?

Eddie Applegate  14:45

I think that if you are a little timid and a little hesitant to some people might think oh, you know, well, I don’t want to contradict what the what the doctor is saying I don’t want to, you know, seem like a bother. If saying something is a problem. Write it down. I’m a big advocate of if you know that there’s some issues going in, write down those issues before you get there. Even if you just want to hand it to the nurse, to the nurse practitioner, to the PA, to the doctor, it may be easier than just saying it out loud. This is how I’m feeling today. On the chart, I know that every time I go, I always have to mark on the chart how I’m feeling. Be honest on there. So if you don’t want to say anything, at least be honest on on the chart, that is super helpful, because they’re looking at that over time. Like, “Oh, you were a four yesterday, you were four you know, three months ago or six months ago, but you’re a six today. All right, what’s what’s going on that we have this, this change?” So honesty is the is the number one thing whether that’s honesty in speech or honesty in writing it down, if that makes you feel a little less aggressive or whatever, but just write it down if saying is too much.

Zoe Rothblatt  15:56

I think that’s great advice, especially because sometimes when you get to the appointment, you go blank and forget what you want to say. So just having it there as that little reminder and push to say it is really helpful.

Eddie Applegate  16:08

Absolutely.

Zoe Rothblatt  16:09

Well, Eddie, thank you so much for joining us today. I really appreciate your time and you sharing your story. You know, you mentioned 20 plus years, I feel like we’re just getting started still. Thank you.

Eddie Applegate  16:21

You are very welcome. It’s I’m very glad to be here. And I’m having to keep all this advice fresh in my mind, because I just switched rheumatologist because my rheumatologist of 10 years, just left his practice. And so I’ve started with I’ve started with the new doctor as of this week. And so I had to remember that for myself. So when I knew that this was coming, I was like, Well, this is kind of a good, this is a good way to put my own words into practice. And hopefully I’m listening to myself and, and, and following my own advice so that I can speak up. And that’s what I did. You know, I said, this is how I’m feeling. And I think that he could tell that I had a good knowledge of what was going on. So I was able to be involved in my own treatment plan. And I think that that that really impressed him. But that’s another reason to speak up because you want to be informed you want to know what they’re doing, you are the most vital and integral part of your own treatment plan. So being informed and speaking up is very important because of that.

Zoe Rothblatt  17:20

Well, before we go actually one more question you just mentioned you switch rheumatologist and I’ve been hearing a lot about that in our community, people’s rheumatologist retiring or, you know, there’s not one in their area. How did you go about finding a new one?

Eddie Applegate  17:35

Well, this one I didn’t have much of a choice with because my doctor sold his practice to another group. And they said, “Okay, yes, you can still come to to this location. There’ll be doctors from that practice that are here a few times a week. And so you’ll see them.” So at least I didn’t have to go out and search. But once I found out who it was with, you better believe I went to, to that practices website. Let’s find this doctor. Let’s see what his credentials are. Let’s see what he is, is doing. But the important thing is research. Unfortunately, the first research has to be do they take my insurance?  You are running into your insurance website. I have done that on other specialists. Oh, like, Okay, go to my insurance website. Alright, so what specialists are covered? Okay, so now, who’s closest to me in the Atlanta area. It’s a very big area. And so just because somebody is in the Atlanta area, they can still be an hour plus away from me. So I’m like, Okay, so let’s insurance and then closeness. And then All right, let’s see what the websites look like. And, you know, do they have a lot about the doctors and their credentials, and things like that, but I’ve done that with with other specialists, I’ve kind of gone through that, that research. I think I’ve done more research on doctors sometimes than I have on buying a car. Because that’s a little more important. Like, you know, a car is gonna get you where you need to go, but a doctor is going to be the one that you know, make sure that you are able to function, so a doctor is a little more important, but like I said, with this one that was like, Okay, this practice is taking over and then I was kind of like, assigned to doctor. I didn’t even get the doctor’s name until like a week or so ago. So it was Oh, wow. To me. They’re auditioning for me, not the other way around. It’s like do I want to stay with them? Do I trust them enough? That’s how I always look at it. It’s not Am I good enough to see this doctor is like, is this good? Is this doctor good enough to see me?

Zoe Rothblatt  19:30

Yes. I Love how you just framed that it’s it’s under the same umbrella as this medication failed me. I think we need to do so much in flipping the script on what happens in our care and, and we are you know, we’re the person it’s our life. You know, it’s up to us to have a say and be the main person.

Eddie Applegate  19:51

And feel comfortable with the doctor. And so I think that that’s, that is important that we’re not auditioning for the doctor. The doctor is auditioning for us. We want to make sure that we have that comfort level and the that they have the knowledge base that we require of a clinician. So if they don’t we search again and I know that unfortunately, especially with rheumatologists, it is tough to find multiple rheumatologists in an area. And so some people are kind of stuck with who they have just because of the lack of rheumatologists in the area, if you can and have to, you know, find the one that’s right for you.

Zoe Rothblatt  20:27

Well, on that note, thank you, Eddie, for joining us today and sharing your insights and advice from your journey. I know it’s going to help so many people. So thank you.