The Health Advocates
A podcast that breaks down major health news of the week to help you make sense of it all.


“The Health Advocates” is hosted by Steven Newmark, Director of Policy at GHLF and Zoe Rothblatt, Patient Advocate and Community Outreach Manager 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.
“The Health Advocates” is part of the Global Healthy Living Foundation Podcast Network and hosted by Steven Newmark and Zoe Rothblatt.
S5, Ep 16- Vaccine Update: From the Lag in COVID-19 Bivalent Booster Uptake to a Future RSV Vaccine
The Health Advocates discuss the reasons behind lagging vaccination rates for the COVID-19 bivalent booster in the United States, new vaccines on the horizon for RSV, and strategies that can help improve immunization rates.
“The ability for pharmacists to deliver and provide vaccines is important. It’s much easier to go to a pharmacy. Oftentimes you don’t need an appointment. It’s not as scary, you know, for anything else as going to a doctor’s office. It’s not as intimidating,” says Steven Newmark, Director of Policy at GHLF. “And now they’re also able to provide COVID vaccines, and in some jurisdictions, they’re even able to provide routine immunizations as well. So that definitely helps.”


S5, Ep 16- Vaccine Update: From the Lag in COVID-19 Bivalent Booster Uptake to a Future RSV Vaccine
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
“The ability for pharmacists to deliver and provide vaccines is important. It’s much easier to go to a pharmacy. Oftentimes you don’t need an appointment. It’s not as scary, you know, for anything else as going to a doctor’s office. It’s not as intimidating. And now they’re also able to provide COVID vaccines, and in some jurisdictions, they’re even able to provide routine immunizations as well. So that definitely helps. That definitely helps.”
Steven Newmark 00:34
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 00:43
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:48
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 00:54
So Steven, today we’re going to talk about vaccines. Where we stand with COVID vaccination rates, new vaccines on the horizon and just vaccine strategy overall in the United States.
Steven Newmark 01:04
Great. Well, let’s start with the COVID bivalent booster.
Zoe Rothblatt 01:09
Okay, so… you know, thinking about when this was first authorized and available to us, that was around the end of August of 2022. It got the emergency use authorization, and it became available in September, both the Pfizer and Moderna formulations for adults in the U.S., is that right?
Steven Newmark 01:28
That’s correct. In early October 2022, it was authorized for kids 5 to 17. Depending on the vaccine, Pfizer is a 5 to 11, and Moderna is 6 through 17. And in early December, emergency youth authorization was updated to include children as young as 6 months and older.
Zoe Rothblatt 01:44
So from August to December, all the groups got availability to this new booster and where do we stand now is the big question. What are vaccine rates if every U.S. citizen is eligible for this vaccine?
Steven Newmark 01:58
Well, as of today, only 15.3% of Americans have gotten an updated booster. That’s pretty low.
Zoe Rothblatt 02:04
Wow.
Steven Newmark 02:05
15.3% I’ll say it again. Yeah.
Zoe Rothblatt 02:07
That’s really shocking. Actually, I expected it to be a bit higher.
Steven Newmark 02:11
I know particularly with all of the announcements that you see about the importance of getting vaccinated in winter season leading up to winter season in November and December. There were so many announcements: get vaccinated, get vaccinated! It’s still relatively easy to find a vaccination site, it’s still free. So it is definitely surprising to say the least. There is no doubt that it is the easiest way to protect yourself, is by getting the updated bivalent booster, but here we are 15.3% of us have gotten it.
Zoe Rothblatt 02:41
So why is it so low I guess is the biggest question. And I found a study online that could help us understand this low rate of the bivalent booster compared to the other COVID vaccines. So this was published by the Centers for Disease Control and Prevention and their MMWR. So Morbidity and Mortality Weekly Report and it was about reasons for receiving or not receiving the booster. And what’s interesting is that all of the respondents of the survey had at least two doses of the COVID vaccine. So we’re not talking about a group that was against the vaccine. These are people that got their primary series. Okay, so Steven, the study found that the common reasons for not getting a bivalent booster were; number one lack of awareness about eligibility or vaccine availability, and then also over estimations of their own existing immunity. Whether you know, it’d be from previous vaccines or infections. And I thought that was really interesting.
Steven Newmark 03:42
That is really interesting. I mean, I sort of can understand the second one; the idea of overestimating your own immunity: I’m fine, I’ll be okay, I don’t need this. But the lack of awareness about eligibility or vaccine availability is so high, it boggles my mind. And I guess it sort of shows that we live in a little bit of a bubble, because to my mind, I see notices everywhere, they find me every time I go online. Those are the pop up ads about getting boosted. And you know, the idea that people still don’t know that is very surprising.
Zoe Rothblatt 04:13
You know, I went home to New York, New Jersey a few weeks ago, and I did notice a lot more signage about COVID compared to here in Nashville, there’s really nothing. you know, you go into a pharmacy, of course, there are signs about shots available here. But it’s not broadcasted, like we don’t have a subway system, for example. And that’s where a lot of signs are in New York. And it was like coming home and feeling comforted: Oh, yeah. Here’s my bubble. Here’s my people with my messaging. But I guess it’s hard to understand that people don’t know. But I also understand at the same time, because I see that we’re not getting the right messaging out in other parts of the country.
Steven Newmark 04:52
Yeah. So it’s interesting. I’m going to assume that that study did not break it down by geographical region.
Zoe Rothblatt 04:58
I don’t know.
Steven Newmark 04:59
Okay. Well, fair enough. We don’t We certainly don’t have the data for geographic region. But beyond that, what are the thoughts? What thoughts do you have if I may ask Zoe? Putting you on the spot, what thoughts do you have for better educating folks about the availability of these vaccines? The fact that number one, they are available. Number two, you are eligible if you have not gotten a fourth dose, that means you.
Zoe Rothblatt 05:20
Yeah, I think it’s about meeting people where they are.
Steven Newmark 05:23
Right.
Zoe Rothblatt 05:23
So you know, what are people doing everyday, they’re going to the grocery store, they’re dropping their kids off at school, like just… so they’re carpooling, they’re driving on highways, maybe signage there. I think that we have to reconsider where we’re putting messages that we’re meeting people in their everyday life and not creating an extra burden. Because often, like health care can feel like a burden. Especially for people with chronic illness. But I think it’s just about getting the right messaging out in the right places. And interestingly enough, this survey found that for participants that were given more information on eligibility and availability, 67.8% of those that hadn’t gotten their boosters said they would get one. And then a survey one month later showed that 28.6% had actually done so. So you know, giving information works.
Steven Newmark 06:13
Yeah, absolutely. I totally agree with that. I guess, like you said, it’s meeting people where they are. I mean, there was a time when you couldn’t walk three blocks in a major city without seeing a vaccine. Now, you know, to some extent, you have to seek it out a little bit more affirmatively now, by going to a pharmacy. You know, without diving deep into these numbers. I’m less concerned about chronically ill folks who probably have the right information, at least when it comes to knowing the availability of vaccines, and more concerned about the general public. I’m hoping that the chronically ill community is aware of what’s available and their eligibility. But of course, it is important for the chronically ill individuals that a large swath of the population also gets vaccinated to help control the virus and the spread of the virus.
Zoe Rothblatt 06:55
Exactly. I mean, we can dive so deep on that on the concept of herd immunity, that we thought we could get there with COVID but haven’t, but it’s still does matter that those around you are vaccinated. And then Steven, just really quickly, you know, something else that helps with vaccination rates is pharmacists ability to give vaccines and I wanted to give a shout out to our colleagues, Conner and Robert, on Healthcare Matters. They recently did an episode on this topic, on a report looking at the pharmacists’ role in immunization. And overall, they found that since the pandemic, adult patients were getting vaccines at pharmacies, and just general vaccines, and how important of an access point this is.
Steven Newmark 07:35
Yeah, absolutely, the ability for pharmacists to deliver and provide vaccines is important. As you said, it’s much easier to go to a pharmacy. Oftentimes you don’t need an appointment. You can just walk in. It takes a few minutes. It’s not as, it’s not as scary, you know, for anything else as into a doctor’s office, it’s not as intimidating. And it’s been many years throughout the country where pharmacists have been able to provide flu vaccines. And in the United States now, they’re also able to provide COVID vaccines, of course, and in some jurisdictions, they’re even able to provide routine immunizations as well. So that definitely helps. That definitely helps.
Zoe Rothblatt 08:12
You know, thinking about the COVID vaccines in the low rate, you know, experts are looking in strategy going forward about vaccine timelines. And our recording is before this meeting, but the FDA is considering a shift in the COVID strategy. Because currently, people… I actually just learned this. So currently, people want to get fully vaccinated against COVID, you have to first get your primary vaccines. So those first two shots spaced weeks apart, and then two months later, you’re eligible for the booster. So you can’t just walk into a pharmacy and say, I want the COVID booster if you haven’t got the original series, which has a bit of a disadvantage, because that’s updated to combat the current variants. So now the FDA is gathering to discuss whether or not it should just be similar to an annual flu shot where you don’t have to have this previous injections in order to be eligible for the current shot.
Steven Newmark 09:05
Right. And so that would obviously be a big help. So we’ll see… we’ll see what happens with that.
Zoe Rothblatt 09:09
So you know, what does that mean for immunocompromised? Well, there aren’t guidelines yet. This is just the initial thoughts and a meeting. It says that the FDA would recommend two annual doses of the shot and I was just thinking how it’s kind of annoying for people with chronic illness to have to do two shots because you know, myself like many had to hold my regular injections that treat my arthritis and Crohn’s for the COVID shot, so, you know, doing that twice is like a huge setback in health and…
Steven Newmark 09:40
Yeah.
Zoe Rothblatt 09:40
I know for the flu shot, I get a higher dose with my rheumatologist and I guess you know if anyone’s listening from the FDA, we would like a higher dose so we don’t have to go in twice and skip our meds twice because it’s just you know, a lot of considerations on your body.
Steven Newmark 09:56
That’s true. I’m just thinking out loud. I do wonder if some of that happens to be because having two doses is more effective than getting one stronger dose? I don’t know the answer to that. But I’m just positing that as potential, as well as the side effects of a much stronger dose of COVID vaccine versus a stronger dose of flu vaccine could be more impactful, shall we say, in the 24 hours after receiving it. Just a guess, or just a potential answer. But yes, obviously, getting one vaccine is better than getting two, and simpler.
Zoe Rothblatt 10:25
Yeah. So I mean, we’ll wait to hear the guidance. That’s all really good points. And obviously, I just want to do what’s best and gonna be the most helpful, but it’s just a bunch of considerations. Other things experts are grappling with, as this meeting comes up, you know; is it too soon to rely on annual boosters? Is targeting new variants, the most effective way to combat COVID? A bunch of questions like that.
Steven Newmark 10:48
Yeah. So we’ll see what the FDA does. And we’ll see where we go from there. And we’ll report what we learn as always.
Zoe Rothblatt 10:54
So you know, we covered COVID and flu. Now let’s turn to the other… the third link in our tripledemic: RSV.
Steven Newmark 11:02
Well, yeah, there is no vaccine to prevent RSV. There is a medication that can help protect some babies that are at high risk for severe RSV disease. It’s very costly and requires a monthly injection. But there is another medicine in development for infants that would last for an entire season.
Zoe Rothblatt 11:18
That’s great to hear that there’s something in development. And I think there’s also a bunch of vaccines in development for RSV in both elderly and infant populations.
Steven Newmark 11:28
And Moderna and Pfizer, as we know, produced the COVID vaccine in record times, shaving years off the traditional vaccine research and approval process. And now the same expedited timeline is occurring for RSV in both elderly and infant populations.
Zoe Rothblatt 11:41
So the vaccines, I know for infants, it’s focused on pregnant women to protect their infants by transferring antibodies in utero, which is pretty cool. Actually, one of my friends got the COVID vaccine, in I think the third trimester and her baby was born with protections against COVID. So you know, it’s just really cool that we’re able to do that.
Steven Newmark 11:59
Yeah, absolutely. So we’ll see what happens. Hopefully, we’ll get some development on this, particularly for the elderly population and those with young children.
Zoe Rothblatt 12:08
And I haven’t seen any talk about a vaccine for RSV for immunocompromised, but we could probably expect that next, right, since they’re focused on high risk groups. So we’ll definitely keep our community updated.
Steven Newmark 12:20
For sure.
Zoe Rothblatt 12:22
All right, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 12:26
Well, I was definitely surprised when you told me that the top reasons for folks not getting their bivalent boosters is because they’re not aware that they’re eligible, number one. And number two, that they… they’re just not aware about the vaccine generally. It was just surprising. I can’t believe with all of the information that’s out there. It just goes to show you how difficult it is to break through with important information.
Zoe Rothblatt 12:50
For me to. I was so shocked by that 15% have gotten the bivalent booster, especially because it came before the holidays, I really expected that number to be higher.
Steven Newmark 13:02
Well, we hope that you learned something too. And before we go, we definitely want to give a shout out to Healthcare Matters and our colleagues, Conner and Robert. They recently did a deep dive episode into the report on pharmacists role and immunization that we spoke about earlier. You can check out all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 13:19
Well, everyone thanks for listening to The Health Advocates a podcast that breaks down major health news of the week to help you make sense 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 13:33
I’m Steven Newmark. We’ll see you next time.
Narrator 13:39
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 15- Clinical Trials and Management of Chronic Pain Conditions: The Importance of Representation
In this episode, our hosts are joined by Dr. Titilola Falasinnu, Assistant Professor at the Stanford School of Medicine, epidemiologist, and pain scientist. Dr. Falasinnu shares about the importance of increasing diversity in lupus clinical trials, her research supporting the experience of patients with chronic pain, and the need to address the unique needs of autoimmune patients.
“We urgently need guidelines for the management of chronic pain… to address the individual needs of the patients from a biopsychosocial perspective, which is where the physical and emotional well-being of the patients are prioritized. So this requires an interdisciplinary approach where multiple specialties work in concert with rheumatologists to address the complex needs of patients with chronic pain conditions,” says Dr. Falasinnu.


Clinical Trials and Management of Chronic Pain Conditions: The Importance of Representation
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Lola Falassinu 00:08
“We also urgently need guidelines for the management of chronic pain in these conditions to address the individual needs of the patients from a biopsychosocial perspective, which is where the physical and emotional well-being of the patients are prioritized. So this requires an interdisciplinary approach where multiple specialties work in concert with rheumatologists to address the complex needs of patients with chronic pain conditions.”
Steven Newmark 00:32
Welcome to The Health Advocates a podcast that breaks down major health news of the week to help me 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 health care world to help you make informed decisions to live your best life.
Zoe Rothblatt 00:52
Steven, today I’m excited for you to hear the interview I had with Dr. Lola Falasinnu. We talked about the importance of representation of racial minorities, specifically in lupus clinical trials, her research on chronic pain and rheumatic disease, and the value of health advocacy.
Steven Newmark 01:09
Great, I’m excited to listen. But first we have some news updates.
Zoe Rothblatt 01:13
Okay, what’s our first update?
Steven Newmark 01:15
Well, 2022 was a record high year for Affordable Care Act enrollment, also known as Obamacare.
Zoe Rothblatt 01:22
That’s really exciting.
Steven Newmark 01:23
Yeah, open enrollment just ended and close to 16 million people have enrolled in the health insurance platform.
Zoe Rothblatt 01:29
And I think one of the main reasons for that is the increased subsidies, right? These were first put into effect in the Stimulus Bill during COVID, and they were extended in the Inflation Reduction Act, which we did a whole episode on. So it’s really exciting to see it come to life.
Steven Newmark 01:45
Yeah, absolutely. Basically, the subsidies help people pay part or even in some cases, all of their monthly premium.
Zoe Rothblatt 01:51
And we know how costly that can be, you know…
Steven Newmark 01:54
Yup…
Zoe Rothblatt 01:55
But health insurance is so important, especially when you have chronic disease. Like it’s literally a lifeline to getting care. So it’s good to see that Americans are enrolling.
Steven Newmark 02:05
Absolutely. Absolutely. Also following up from our recent episode we did on COVID policy in China, the CDC is expanding airport screening here in the United States.
Zoe Rothblatt 02:14
Yes. So you know, as China moves away from the zero COVID policy, there’s concern over outbreaks, and especially over a new variant and the US is being watchful.
Steven Newmark 02:24
Yeah, as of our recording all passengers two years old and older, originating from China will be required to get a COVID test no more than two days before their departure, regardless of their vaccine status.
Zoe Rothblatt 02:36
Okay, well, it’s good to see the CDC coming out and making some rules. I feel like we haven’t got updated rules from the CDC in a while, so it feels comforting to see that they’re watching this.
Steven Newmark 02:48
Yeah, hopefully it’ll help stem some of the flow and, you know, help us ward off or at least minimize a great influx of some super new variants, but we’ll see. We’ll see what happens.
Zoe Rothblatt 02:58
We’ll see. Alright, Steven. Well, that brings us to the interview portion of our episode. Like I mentioned, I spoke with Dr. Lola Falasinnu. Dr. Falasinnu is assistant professor at Stanford School of Medicine. She’s an epidemiologist, and pain scientist. Her current research interests are focused on developing best practices for adapting electronic health records for use and epidemiological inference in rheumatology with an emphasis on pain, disability and function. Dr. Falasinnu is also an expert in outcomes research and she identifies as Nigerian Canadian and is passionate about increasing the representation of patient and clinician voices impacted by rheumatic diseases in Sub-Saharan Africa. Well, thank you so much for joining us on The Health Advocates. Welcome.
Dr. Lola Falassinu 03:42
Thank you so much.
Zoe Rothblatt 03:43
So why don’t you start by telling me in our audience, you know about yourself, what led you to your research at Stanford, and we talked a little bit in your intro about what you’re working emcompasses now, but maybe you could elaborate for us.
Dr. Lola Falassinu 03:56
So I’m a classically trained epidemiologist. I started off my career after my Master’s Degree in Epidemiology and Public Health Surveillance. I helped coordinate the integration of an electronic HIV registry in health departments in Washington, D.C.. My Doctoral Degree is from the University of British Columbia in Canada, where I also conducted surveillance work at the British Columbia Center for Disease Control. During my PhD I also worked at the World Health Organization where I helped develop policies to guide the adoption of electronic health records in resource limited countries. I also identify as a social epidemiologist. So my PhD involves the development and validation of clinical prediction models and their integration into electronic health records. So during my PhD, I gained an appreciation for sex and gender research, particularly how clinical and structural interventions can best be implemented and adapted to promote health on a population level. And this directly led me to join in Dr. Julia Simard’s Lab at Stanford as a postdoctoral fellow with a broad interest in lupus research. So my current research interests can be condensed into three very broad areas. First, I’m interested in developing tools to study the epidemiology of pain in the general population and also in rheumatology. Second, I’m also interested in explicating the mechanisms of race, ethnic and gender disparities in rheumatology. And finally, I also studied ways to increase ancestral and gender diversity in rheumatology trials.
Zoe Rothblatt 05:25
So going back to your focus, you mentioned that you’re focused on rheumatic disease. Can you talk a little bit about what drew you into this field and why that focus specifically, I know a lot of our listeners live with arthritis so I’m sure they’re excited to hear that you’re doing so much great work in this field.
Dr. Lola Falassinu 05:41
So I am primarily a lupus researcher, but I’m also interested in autoimmune rheumatic diseases. Lupus is a systemic autoimmune disease that disproportionately affects women of childbearing age or women of reproductive age. And lupus has a predilection for racial minorities. So Black, Hispanic, and Asian women have higher risk. My journey to becoming a lupus researcher stems from my experience of losing a very good friend to lupus. During that time, one other friend and a close family member were also diagnosed with lupus. All of them were Black women. So I channeled the helplessness I felt at that time, and this was like a huge inflection point in my life, and I decided to redirect my skills into doing research that will ultimately reduce the pain and suffering in lupus.
Zoe Rothblatt 06:24
I think a lot of our listeners can relate to that and myself as well. I live with two autoimmune diseases and I think whether it’s yourself or someone around you that’s living with these conditions, or, you know, like you mentioned, you lost someone really, you can take that pain and turn it into purpose. So I’m excited to learn from you. Let’s dive into some of the research. You talked about diversity in clinical trials and just diversity in this research in general, why is that important? And what can we do to improve it?
Dr. Lola Falassinu 06:53
So in 2016, we did a review of the representation of racial minorities in lupus trials. We estimated that black patients comprise about 43% of lupus patients in the United States. However, black patients comprise only 14% of trial participants in lupus and black representation actually dropped during the study period from 20% in an earlier time period to 10%, between 2012 and 2017, making this the only race group whose representation had decreased during that time period. So we replicated that study in rheumatoid arthritis and also found under representation of racial minorities and trials. So in that study, we found that black participants represented only 3% of rheumatoid arthritis trials, which was significantly lower than the representation of black people in US census. So the issues of the lack of diversity in clinical trials is not unique to rheumatology. We see it in cancer and cardiovascular disease trials as well. So there are some very important points to consider. For example, the inclusion of race ethnic minorities in trials adds complexity and cost. This includes translation services, transportation and restitution of lost wages. So I usually ask 3 questions when I’m thinking about this line of research. First, are clinicians actively approaching minoritized patients and if we find that they’re not then there are measures and training programs to reduce implicit bias. And the second question usually is: Are minoritized patients refusing to participate in trials when approached, and issues of medical mistrust can be mitigated by having a more diverse trial workforce. And finally, I always ask whether the inclusion or exclusion criteria unintentionally limit the inclusion of race ethnic minorities. For example, black patients have more severe phenotypes of lupus. So are inclusion and exclusion criteria including only milder disease and excluding black patients? And I also think of the following solution. So we need to acknowledge the uniqueness of the lupus patient group. They tend to be very young women who are grappling with their mortality, and they’re also dealing with other life stressors, so they are dealing with schoolwork and relationships. So how can we adapt the traditional trial recruitment framework while acknowledging the challenge of engaging this patient group. First there needs to be very detailed plans to engage women and minoritized patients very early in the development of research questions, so that these questions are relevant to patients across disease severity and subtypes. Second, there needs to be plans to enroll diverse patients in pharmacogenomic and pharmacokinetic studies. And third, within the context of trials, diverse patient perspectives need to be considered in terms of meaningful endpoints and patient reported outcomes. Finally, there needs to be plans to conduct post market surveillance to get a sense of how the drugs are working in different patient groups in which there are minorities and pregnant women. And finally let’s talk logistics. We recently looked at the reasons why black women with lupus enrolled and finish the trial. We found that older women those who are disabled or unemployed, and those with few children in their households, were the most likely to enroll and stay in the trial. In fact, for each additional child in a woman’s household, our odds of staying in the study reduced by 22%. So remember, I mentioned that lupus affects women of reproductive age, or women of childbearing age, life which children can be very busy and schedules of parents may not permit the addition of a clinical trial. I’ve been there. Trials need to improve participation among those with children by making provision for childcare, either on site or through reimbursements with child care services.
Zoe Rothblatt 10:10
From what I’m hearing from you, there are so many stakeholders involved. You started by outlining solutions in the doctor’s office, what physicians can do, then talking about how patients can get involved, then things like post market surveillance, which is a whole other group involved in that. And you know, not only are all the stakeholders, but like you just mentioned, we need to look at the patient as a whole. You can’t just say, okay, here’s a lupus patient, put them in the trial, there are things going on. You mentioned school, work, if there’s a family, and I think that’s so important, because when you live with a chronic disease, that’s just one part of your life. And it may be a really big part, but there’s all these other pieces that you need to advocate for yourself in order to be well, there’s so much more to your health than just the one piece. I’d like to switch gears a little bit and talk about your research on chronic pain. Can you tell us about the study that you worked on and why the findings are important for patients?
Dr. Lola Falassinu 11:04
So people with autoimmune rheumatic diseases such as lupus and rheumatoid arthritis and psoriatic arthritis face many health challenges. This includes unpredictable disease flares and organ damage. Chronic pain often compounds these challenges and often takes many forms including arthritis, headaches and abdominal pain for example. Scientists and clinicians do not fully understand the mechanisms that cause pain and autoimmune rheumatic diseases but we know that pain is one of the most under-addressed complaints in patients with rheumatic diseases. Pain researchers identified about 11 conditions that they named chronic overlapping conditions. These include fibromyalgia, irritable bowel syndrome and chronic low back pain. In the general population, as the number of chronic overlapping pain conditions increases in a patient so does the a likelihood of disability and psychological problems. Chronic overlapping pain conditions are also associated with fatigue, mood, and sleep disturbances. So in this study, our goal was to estimate the burden of chronic overlapping pain conditions in patients with autoimmune rheumatic diseases. So this knowledge can be foundational in developing more effective management options for chronic pain in patients with autoimmune rheumatic diseases and improve their quality of life and function. So we looked at electronic health records of 6,000 patients with five autoimmune rheumatic diseases: psoriatic arthritis, rheumatoid arthritis, lupus, sjogrens syndrome and systemic sclerosis. So between 36 to 62% of patients in the study had chronic overlapping pain condition diagnosis. The most common chronic overlapping pain condition was chronic low back pain followed by migraine and also fibromyalgia. We found higher prevalence among black patients and those using public insurance and also found that patients with one or more chronic overlapping pain condition were more likely to report depression and anxiety and they also had more frequent emergency department visits, surgeries and hospitalizations. So this finding suggests that chronic overlapping pain conditions are strikingly common among patients with rheumatic disease and are associated with lower quality of life and greater health care needs. So what does this mean? We need better chronic pain treatment options. We also urgently need guidelines for the management of chronic pain in these conditions to address the individual needs of the patients from a biopsychosocial perspective, which is where the physical and emotional well being of the patients are prioritized. So this requires an interdisciplinary approach where multiple specialties work in concert with rheumatologists to address the complex needs of patients with chronic pain conditions.
Zoe Rothblatt 13:28
A common thread that I’m seeing in your research is just, you know, looking at the patient as a whole, involving all stakeholders, like it really isn’t on one person to figure this out. As a patient, you’re not alone. There’s other people in your care and I so appreciate that your research is looking at the physical, the mental, the lifestyle, there’s not a lot of research out there that patients can point to and say: “that’s me”, especially when you say that there’s a lack of diversity in clinical trials and just research in general and the fact that you’re paying attention to black voices, so that people can see that research and identify with it is so important. So thank you so much for all that you do. Okay, the last question I want to ask you is what does health and patient advocacy mean to you?
Dr. Lola Falassinu 14:10
So this is such a good question, and it strikes at the heart of the issue of reflexivity. And in research, reflexivity means examining one’s own beliefs, judgments and practices during the research process and how these may influence the research. So I’m a black woman doing research in rheumatology. As I mentioned before, my experience with friends and family living with lupus tends to intentionally or unintentionally show up in the research questions that I pursue. So first, we cannot talk about lupus without talking about sex and the biological significance of sex. However, much less of the conversation is focused on the issue of gender as a constructing risk, morbidity and mortality in lupus and actually in any chronic disease. For example, lupus is an unrecognized leading cause of death in young women in the United States. It is a top five cause of death in 15 to 24 year old Black and Hispanic women. But we do not talk about the psychosocial burden of these young women contemplating their mortality at such a young age. They are often dying of diseases that most people die of at much older age groups. Then there’s the issue of life interruptions. Imagine being a young woman diagnosed with lupus in the middle of say, getting a degree. It’s usually a crescendo of symptoms, and then they finally get a diagnosis. So let’s remember that most people are sickest around the time of diagnosis. So what happens to their dreams of having a partner or children, holding down a job, the achievements that we often take for granted are often out of reach for many lupus patients and this is the same in many chronic diseases, too. And then there’s the issue of social isolation. There are gender disparities in the rate of partner abandonment in chronic disease. For example, in multiple sclerosis, there’s a six fold increase in the risk of divorce after diagnosis when a female spouse is afflicted with multiple sclerosis to when if their spouse is afflicted with multiple sclerosis. So we need longitudinal assessments of social transitions in lupus patients. So how are individual social trajectories unfolding in response to chronic disease to lupus burden for example. So we need interventions to improve resilience coping and medication adherence in patients with lupus. So these are usually like the questions that guide my research priorities.
Zoe Rothblatt 16:25
Well, thank you so much for all you do and for sharing with us today. We really appreciate your time.
Dr. Lola Falassinu 16:31
Thank you for having me.
Steven Newmark 16:33
Yeah, thank you, Dr. Falasinnu and thank you, Zoe. That was a great interview.
Zoe Rothblatt 16:37
Thanks, Steven. I’m so glad you enjoyed it. And may I ask what did you learn today?
Steven Newmark 16:41
Well, you know, I learned… I thought it was fascinating to hear from somebody who has the disciplines of pain management and epidemiology and the interplay between the two. So it was great to hear that interview with Dr. Falasinnu.
Zoe Rothblatt 16:52
Agreed. It was so important to hear from her about, you know, the patient experience and really highlighting that minority groups in order to provide the right care.
Steven Newmark 17:03
Yeah, we hope that you learned something too. And before we go, we definitely want to give a shout out to our colleague Joe Coe who hosts Talking Head Pain where he speaks with people living with migraine and headache about their journey. You can check out all of our podcasts at ghlf.org/listen.
Zoe Rothblatt 17:18
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 positive review on Apple Podcasts. Subscribe 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 17:39
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 14- RSV, Flu, and COVID: A Look at Today’s “Tripledemic”
As we start the new year with a “tripledemic” from the combined threat of RSV, flu, and COVID-19, there’s both a sense of hope and concern. There’s hope that flu and RSV surges are now declining after a peak earlier in the season and there’s concern among the immunocompromised community that the general public has moved on and are no longer taking COVID-19 safety precautions.
“It’s January. January is a time when viruses tend to promulgate. We’re certainly in the midst of another wave when it comes to COVID, and if you want to stay safe, you’re going to have to keep a mask on. A nice, good, tight-fitting mask, whenever you’re in public,” says Steven Newmark, Director of Policy at GHLF. “And, unfortunately, there aren’t too many other ways to mitigate [risk] in our society.”


RSV, Flu, and COVID: A Look at Today's “Tripledemic”
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:06
“It’s January. January is a time when viruses tend to promulgate. We’re certainly in the midst of another wave when it comes to COVID, and if you want to stay safe, you’re going to have to keep a mask on. A nice, good, tight-fitting mask, whenever you’re in public. And unfortunately, there aren’t too many other ways to mitigate in our society.
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. Today, we will talk about the state of the pandemic and other respiratory diseases going around as well as what to expect for Health Policy in 2023.
Zoe Rothblatt 00:59
2023, that’s right! Happy New Year Steven!
Steven Newmark 01:02
Happy New Year! We hope all of our listeners had a restful holiday. How was your holiday Zoe?
Zoe Rothblatt 01:07
You know, it was really great. In the beginning, I went on a mini road trip. So I saw a bunch of southern cities. It was so fun. Unfortunately, on that road trip, I did catch COVID…
Steven Newmark 01:18
Who invited that guest along for the trip, man?
Zoe Rothblatt 01:21
I know it was a nasty guest. It was pretty rough. As our listeners know, I live with two chronic diseases. So you know, it definitely flared those up. I was in contact with my doctor. But I think you can hear my voice now I’m doing a lot better. So I’m glad to be here recording with you and able to just, you know, focus on my health and good things for the new year.
Steven Newmark 01:41
Well, that’s good to hear. It’s not totally surprising that you caught COVID because it’s still with us, and it’s still with us in a pretty robust fashion. And today we’re going to talk about the latest on what’s happening with COVID-19, the flu, and RSV in the United States, otherwise known as the “tripledemic”, or the “tri-demic”, or the “triple pandemic”.
Zoe Rothblatt 02:01
Don’t threaten me with that, Steven. I don’t think our emotional health can handle a “tripledemic”.
Steven Newmark 02:06
Well, I don’t know what to tell you, welcome to 2023.
Zoe Rothblatt 02:09
Right. It’s not a fun winter. So you know, let’s dive in. What is going on with all these respiratory conditions?
Steven Newmark 02:16
Yeah, well, sorry to say, it is looking a little rough out there. There’s a high number of influenza like illnesses, sometimes shorthand for that is IOI. Those are illnesses that deal with fever, cough and/or sore throat, that are reported at doctors offices, are looking high as of January 2023.
Zoe Rothblatt 02:33
And we know that respiratory season started early. And you know, a lot of that is due because we’ve all been quarantined. And the flu hasn’t been around as much as the past two years because we were taking all the COVID precautions and now as society moves on and the mask comes off and you know, people are just going about their everyday life without distancing and protections. We’re seeing the rising cases. But you know, it’s also on the descent, there is some hope although it’s too early to celebrate because we may see humps as we did in you know, pre pandemic years. And like we see with COVID there’s different waves of it, but it seems like this high wave is on the descent.
Steven Newmark 03:10
Yeah, so you know, let’s break it down disease specific from the “tripledemic”, if you will.
Zoe Rothblatt 03:14
Yeah. Shall we start with RSV, Steven? You’re a parent so I know that this has probably been top of mind for you especially.
Steven Newmark 03:22
Yeah, that’s true. I mean, luckily I don’t have children under the age of five, which is where you really start to look for RSV. RSV, by the way stands for respiratory syncytial virus infection, very difficult to say and also not fun when you have it. But the good news for those following RSV is that cases are actually coming down pretty heavily. So this is good news for older adults as well as parents of children under the age of five.
Zoe Rothblatt 03:45
That’s really good news. You know, we’d never want anyone to get sick, but it’s especially scary when it’s young children. So it’s really good to hear that the hospitalizations are going down and the peak is going down.
Steven Newmark 03:56
Yeah, the peak really was really mid-November of 2022. Hospitalizations, they just blew through the pre pandemic years, you know, and they reached an all time high of 70 kids hospitalized per 100,000 infections. Historically, peaks have been from anywhere between 26 and 52 kids per 100,000 infections. So it was much higher than that. But thankfully, the numbers are really starting to come down
Zoe Rothblatt 04:18
And what’s going on with the flu. I mean, we’ve been hearing a lot about the flu this year.
Steven Newmark 04:22
Yeah, similar to RSV, the flu came on early this year and it appears to have peaked early as well though we won’t know until of course the end of the season to see if it makes a comeback, but trends are going down, not as quickly as RSV but by all metrics, testing positivity rate positive numbers in nursing homes, hospitalizations, are all showing movement in the good direction.
Zoe Rothblatt 04:45
That’s good to hear. Especially you know the difference I think with COVID I know we’re gonna get on a little bit but we have the at home test but for flu I don’t think there’s an at home test. So these numbers should be pretty accurate because it’s people going in to get tested.
Steven Newmark 04:59
Correct. So like I said, the numbers overall are going down. Another thing that’s somewhat positive, the severity of the flu this year is not particularly high. They are on track for a mediocre season when it comes to hospitalizations. So that’s a good thing as well, of course, and not to minimize what is happening out there. We’ve already lost 13,000 Americans to the flu this season. 61 of those were children. So I don’t want to minimize what’s going on with the flu. But just to be positive, we are moving in a positive direction.
Zoe Rothblatt 05:30
I was about to say that, yeah, it’s helpful to hear these numbers. But of course, we can’t minimize the suffering, especially for our community with chronic disease. Sometimes it hits a little bit harder. And, you know, as someone who was just sick, I’m like, we can’t minimize this at all. So stay safe out there friends. Definitely.
Steven Newmark 05:50
Yeah. And I should mention that in the Southern Hemisphere, we saw during the strain of flu, we saw two waves. So there’s a high possibility, if you will, that a second strain could be coming our way.
Zoe Rothblatt 06:02
Because we in the U.S. currently have that influenza A strain, right? And then the other one was B, so we could be seeing that.
Steven Newmark 06:10
Correct. So maybe breathe a half a sigh of relief, not a full sigh of relief, if you will?
Zoe Rothblatt 06:14
Yeah, well, it’s important to know about this. And we’re lucky enough that we get that information from the southern hemisphere and have a little bit of advantage. So you know, the scientists, epidemiologists can be planning and we get the right public health messages out. I do think that so much of advocating for yourself as looking at this information and being well informed so you can make the right decisions to stay healthy throughout this season. Because as we’re talking about, there’s a bunch of stuff going around that we need to be on the lookout for.
Steven Newmark 06:43
Definitely. Well, and then there’s the big one: COVID.
Zoe Rothblatt 06:48
Yeah, it’s hard to believe this is what the third year, the fourth year, I can’t even keep track anymore. It’s still very much in our everyday lives going into 2023.
Steven Newmark 06:59
Yeah, as we enter 2023, I guess, technically the fourth calendar year, if you will, of us dealing with COVID. For some good news, we did get through all 2022 an entire year without a new variant of concern. In other words, Omicron continue to mutate without a variant coming from out of left field. So that’s good.
Zoe Rothblatt 07:17
Oh, right. Because before we are seeing, you know, Delta then Omicron, now these are all just in the Omicron family. And we do have that bivalent booster focused on the Omicron family. So that is good news. But I know it’s good news, always comes bad news. What do you have for us next, Steven?
Steven Newmark 07:35
Well, well, the bad news is that the Omicron subvariants are doing plenty of damage on their own. This is especially the case when coupled with the holidays, you know, the changing behaviors and a lot of socialization without masks. So we’re starting to see an uptick. And the current viral culprit right now is known as the subvariant XBB.1.5.
Zoe Rothblatt 07:57
That sounds threatening.
Steven Newmark 07:58
Yeah, it’s pretty bad. Pretty, “pretty badass”, if you will. It’s definitely like something cool in a science fiction movie, I suppose. The World Health Organization is currently conducting a risk assessment. So hopefully that will come out in a short period of time. But it definitely has a viral advantage here to the United States. It started in the northeast, but it’s now quickly spreading to the south and will dominate pretty much the entire country very shortly with the peak expected sometime in February.
Zoe Rothblatt 08:23
I caught it in the south. So it’s definitely there. Granted I don’t know what variant I had.
Steven Newmark 08:29
Right. Of course.
Zoe Rothblatt 08:30
I’m assuming it’s one of the newer ones, because it’s accounting for a lot of the cases. But it’s definitely moving through the country, which is, you know, like you said, we had the holiday travel we saw after Thanksgiving that cases spiked. And now it’s been a week or whatever, since Christmas, New Year’s, Hanukkah, whatever you celebrated. So…
Steven Newmark 08:50
Yeah.
Zoe Rothblatt 08:50
We are seeing those peaks. And we’re you, just said, we’re expecting another peak in February. So we really do have to stay vigilant this time of year and I became a little more relaxed with my restrictions. I’ll be totally honest. And it was rough. And I’m definitely going to be more careful moving forward.
Steven Newmark 09:08
No, absolutely. I mean, look, I think the key takeaway is, it’s January, January is a time when viruses tend to propagate, we’re certainly in the midst of another wave on when it comes to COVID. And if you want to stay safe, you’re going to have to keep a mask on a nice, good, tight fitting mask whenever you’re in public. And unfortunately, there aren’t too many other ways to mitigate in our society.
Zoe Rothblatt 09:31
Also, unfortunately, a lot of people have moved on and it sort of feels like every man for himself at this point. I know our chronic disease community like really is there for each other and it’s amazing to have that support, but it’s not as strong with the general public. So you know, as we’re in this new year, and people continue to get over COVID I just want to say that you know, we’re here for you and we understand you and we’re going to keep talking about and providing you know, tips and health advocacy for you know, fighting this virus together?
Steven Newmark 10:01
No, absolutely, yeah. That’s what I was referring to when I said there aren’t too many ways of mitigating in our society generally other than wearing the mask yourself. So, you know, each person for themselves out there. But we should talk about some positives. You know, I think it’s important to note that hospitalizations are very different today than they used to be, you know, indications of severe hospitalization, like the number of patients in the ICU are not increasing. This is a very good sign that the severity of Omicron and these mutations may not have changed or may not be changing for the worse. So it’s early, but that’s good. And the second thing, as we say all the time, vaccines work. People that were vaccinated with the bivalent booster have, according to a latest study an 18.6 times lower risk of dying from COVID, than unvaccinated people. The risk of infection is also three times lower when folks are vaccinated. This is even the case for folks with weaker immune systems, like those of us who are chronically ill, and those who are over 80 years old. So the vaccines work, the vaccines help, and we have a bivalent booster that’s specifically targeted for the Omicron variant.
Zoe Rothblatt 11:01
Yes, although I mean, it’s great, we have the vaccines, I don’t want to diminish that, it’s just one thing top of mind for our community is that with the newer subvariants that, you know, the monoclonal antibodies, including Evusheld doesn’t work as well. So you know, it’s still something is better than nothing, it’s what physicians and experts are saying, it just may not be as effective as it once was. Although we do have the treatment Paxlovid which still works. You know, talk to your doctor about what’s right for you. But I would say the best thing is, after just having had COVID, I had been in contact with my doctor before about you know what would happen if I do get it and I had a plan, which made me feel the best about the situation I was in, so I would say that’s my top piece of advice when you hear about these things like Evusheld and Paxlovid and the vaccines, definitely talk to your doctor now, before anything, so you guys can plan together.
Steven Newmark 11:53
Absolutely. I think what you said just to tease it out, is make a plan with your doctor. Be ready.
Zoe Rothblatt 11:58
For sure. So okay, so what’s the bottom line? RSV and Flu trends are showing welcoming signs. But you know, COVID is now taking over the impact of this new subvariant and the height of the COVID winter wave is unknown, but vulnerable people are in a tough spot as they have been, as we have been.
Steven Newmark 12:18
Look, there are a lot of people out there getting sick, and there are still plenty of winter season left. But you know, as a listener of this podcast, you know what to do, make a plan with your doctor, make a plan with your family, make a plan for yourself and be ready.
Zoe Rothblatt 12:31
So Steven, switching gears really quick, I wanted to ask about what we could expect for Health Policy in 2023. We have a new Congress. I know we talked a lot about the election when that was going on. And I wanted to hear your thoughts on this new Congress.
Steven Newmark 12:46
Sure. So as you said, we do have a new Congress. The Senate is somewhat unchanged, there’s a one more democratic seat than there was in the previous Senate, so it’s still controlled by Democrats. However, over on the House side, the Republicans have taken over. And in fact, they even have a speaker of the house, which last week, we weren’t so sure that would happen, but it has happened. So things are up and functioning such as they are over in the house. However, with a divided government, and particularly a divided Congress, it’s going to be very difficult to get things done.
Zoe Rothblatt 13:15
So you know, let’s focus on some areas relevant to our community, we might have talked about them in the past, but going into 2023, we’re still going to be focused on the Safe Step Act, which is a federal piece of legislation that helps protect patients from step therapy, the insurance practice that requires you to try and fail medications before you can get the one prescribed by your doctor. So you know, we’re just continuing to advocate for this and hope for passage. What do you think is the likelihood of something like this passing this year?
Steven Newmark 13:45
Yeah, that’s a great question. I would think of it less in terms of this year or more in terms of this Congress, which is a two year project. And I’ll just say, you know, first and foremost, the odds of any grand legislation in healthcare, or really any area is essentially unlikely because it’s a divided Congress. So the odds of coming together to get something that both Republicans and Democrats are behind, that is somewhat radical, it’s going to be very rare. Now, in our world, you mentioned the safe step act. This has been introduced in the prior three congresses. So for the past six years, it’s been part of the legislative process. And each time it gets introduced, we get more and more sponsors more and more senators on the Senate side, and Congress members on the House side signing on to it. It’s bipartisan. It’s got bipartisan support. And like I said, it continues to grow in support. So at some point, you know, we’re hoping that it will reach the tipping point and knock on wood, fingers crossed, whatever you might want to do. We are hopeful that this will be the Congress where it happens. Congress, I seem to think of it in terms of two years, but really, it’s more like a year and a few months because once we get into mid 2024, it becomes presidential election season. So that’s another time period when very little is likely to get accomplished. But yeah, Safe Step Act is a top priority for GHLF and other patient groups as well. So we hope to work with our coalition partners and with members like you to help push for the passage.
Zoe Rothblatt 15:08
Definitely, um, you know, just thinking about some other top line items. What about COVID? We talked about this, the election would affect COVID funding. What are you thinking now, given the new Congress?
Steven Newmark 15:19
You know, I would say Republicans, particularly Republicans in the House are less than enthusiastic about continuing funding for COVID policies generally, for continuing any policies that relate to protection measures when dealing with COVID. So I think it’s very unlikely they will see more funding more funding from the federal government to trickle down to state and local governments to assist with COVID. That being said, the Biden administration did just authorize, through existing funds, for more free tests per household. So that’s something you should definitely take advantage of, you can get that through usps.gov, or through vaccines.gov. So you know, that’s some minor good news for now. But it’s unlikely that some of the funding will continue. And when I say funding, I’m talking about the ability to get vaccines for free, the ability to obtain some free PCR tests and things of that nature.
Zoe Rothblatt 16:12
You know, it’s interesting, you brought up the free COVID test, I had a mental note to say it. So thank you for the reminder. I took advantage of that, and mine came within a week. So definitely a really great option.
Steven Newmark 16:22
And look, they’re still extremely helpful. I had a family gathering this past weekend. And it’s very comforting to know that we all have plenty of tests, so we can each test without worrying about diminishing our supply, and then we’re able to gather and feel comfortable about it. So it’s great.
Zoe Rothblatt 16:37
And then around the states, we have a bunch of stuff going on. And I wanted to encourage our listeners to get involved with us, you could go to 50statenetwork.org or email us at [email protected] You know, we have copay accumulator legislation, which helps patients count their money that they paid for their prescriptions, and you know, coupon codes they use or assistance that counts towards the medication and their deductible. And, okay… this is a little bit of a list so bear with me, I just want our our friends in all states to hear where we’re focused. There is Florida, Texas, Pennsylvania, Colorado, Massachusetts, Michigan, Ohio, South Carolina, Utah, and Wisconsin. And I say that with such joy, because it is amazing that, you know, we have so many states focused on this type of legislation to help our patients get affordable access to treatment.
Steven Newmark 17:30
Yeah, no, it’s great working through the states. It’s where a lot of the legislation can be found, particularly with some of the gridlock in Washington that we’re likely to see. So we at GHLF have always been focused on the states through our 50-state network. And we will be hyper focused on the states that you mentioned and particular legislation that you had just brought up.
Zoe Rothblatt 17:49
And then Steven, you know, we’re focused on a few more issues around the states. The first one is non-medical switching, which helps give patients protections to get their medication for the full year and avoid being unnecessarily switched. And we’ll focus there in Texas and Pennsylvania, as well as in Washington, some pharmacy benefit manager reform bills to help increase transparency there. So lots of exciting stuff. And I really encourage our listeners get involved, whether or not you’ve been affected by this issues, if you’re someone living with chronic disease, you can speak to you know how staying on your medication has helped you feel good. I certainly have shared my story just generally, and it really helps when legislators can hear the personal stories of the community.
Steven Newmark 18:33
Yeah, no, absolutely. And as I mentioned, we at GHLF look forward to getting active in the states in 2023.
Zoe Rothblatt 18:42
Okay, Steven, I think that brings us to the close of our show. What did you learn today?
Steven Newmark 18:46
Well, I learned from your unfortunate personal experience that you know, no matter how vigilant you are, COVID can still break through. So you know, it’s unfortunate, but as we spoke about, always be prepared, be ready, be ready with a plan.
Zoe Rothblatt 18:59
And I was comforted by you to hear about, you know, the numbers and hospitalizations going down, especially for RSV. And it’s just really helpful to, you know, put some facts to the worry.
Steven Newmark 19:12
Well, we hope that you learn something too. And before we go, we definitely want to give a shout-out to our colleague, Daniel Hernandez, who’s got a great program called Let’s Get Personal, and it’s focused on rheumatoid arthritis patient journey, so please check it out.
Zoe Rothblatt 19:25
Yeah, that’s a great listen. I highly recommend checking out Let’s Get Personal and you can listen to all of our podcasts 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 like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. Also, don’t forget to check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 19:52
I’m Steven Newmark. We’ll see you next time.
Narrator 19:58
Be inspired, supported and empowered, this is the Global Healthy Living Foundation Podcast Network
S5, Ep 13- Health Policy and Advocacy Impact: A Look Back at 2022 and What’s Coming in 2023
As 2022 comes to an end, our hosts reflect on yet another eventful year for health policy and advocacy work. Seven bills that GHLF advocated for were passed at the state level, including copay accumulator bills, step therapy bills, and a non-medical switching bill. Patients also received protections against surprise billing.
Our hosts discuss their advocacy work as well as the advancements for patients and issues covered this year on The Health Advocates. “We talked a lot about COVID this year and also other infectious diseases such as Mpox, polio…. We talked about vaccine hesitancy and how it is affecting this pandemic as well as winter flu season and how we’ve said many times throughout 2022: It’s too soon to be totally over with COVID,” says Steven Newmark, Director of Policy at GHLF. The Health Advocates also offer their thoughts on what’s to come for health policy and advocacy in 2023.
“Because they’ve been sort of bottled up for so long, COVID is on the verge of exploding in China. They are already reporting very high numbers, nearly 40,000 new infections per day,” says Steven Newmark, Director of Policy at GHLF.


Health Policy and Advocacy Impact: A Look Back at 2022 and What’s Coming in 2023
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
“We talked a lot about COVID this year and also other infectious diseases such as mpox, polio… We talked about how the mRNA technology helps bring about new treatments for care. We talked about vaccine hesitancy and how it is affecting this pandemic as well as winter flu season and how we’ve said many, many times throughout 2022, it’s too soon to be totally over with COVID.”
Steven Newmark 00:33
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 00:42
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:47
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 01:00
We sure do. As a reminder to our listeners, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shout-out to Talking Head Pain hosted by Joe Coe. If you live with headaches and migraine or know someone who does this podcast covers a wide range of experiences when it comes to living with this neurological disorder.
Steven Newmark 01:22
Definitely. It’s a great show and I definitely recommend it.
Zoe Rothblatt 01:25
Okay, let’s start with a listener comment. Ready?
Steven Newmark 01:27
I’m ready.
Zoe Rothblatt 01:27
This one is from Nathan P. who wrote: “Thanks for putting on such a great podcast.”
Steven Newmark 01:32
Well, thank you Nathan for listening to such a great podcast.
Zoe Rothblatt 01:35
Yeah, thanks, Nathan.
Steven Newmark 01:37
Today we’ll be talking about all the advancements in advocacy and policy we saw in 2022. And some top pieces of news from the year.
Zoe Rothblatt 01:44
This is our last episode of the year, kind of bittersweet.
Steven Newmark 01:48
So sad.
Zoe Rothblatt 01:49
You know, we’ll be back in the new year to keep providing content to you all. And I just want to say we’re so grateful to all of our listeners.
Steven Newmark 01:56
Absolutely. 2020 sucked, 2021 sort of sucked, 2022 big improvement!
Zoe Rothblatt 02:02
Well, speaking about improvement, we had seven bills around the states passed that we advocated for.
Steven Newmark 02:08
Yes!
Zoe Rothblatt 02:08
That’s pretty big, especially in an election year.
Steven Newmark 02:11
Absolutely. We had four copay accumulator bills in New York, Washington, Delaware, Maine that passed, why don’t you explain what these bills do actually?
Zoe Rothblatt 02:20
Yeah so, briefly explained, you know, we can go on and on about these bills but just, you know, a quick one sentence if you know, you want to tell your friends and family what’s going on. So these bills give protections so that any payment made on your behalf for a medication, like let’s say you use a copay card to pay for your copay, that money will count towards your deductible.
Steven Newmark 02:40
We also had a nice non medical switching bill that passed in New York, why don’t you explain what that means Zoe?
Zoe Rothblatt 02:45
So this law will prohibit health insurance from switching stable patients off their current medications to another medication. You know the scenario would be here: you’re just going about taking your medication, refilling it as usual and all of a sudden, one day in the middle of the plan year you get a notice saying: “Hey, we actually think you should take this medication instead.” You’re obviously upset because you’re doing well. You want to take what your doctor prescribed, and you’re worried that the other one won’t be effective. So this law ultimately stops that process.
Steven Newmark 03:14
Great. We also had 2 step therapy bills that passed in California and Massachusetts. Why don’t you explain what those do Zoe?
Zoe Rothblatt 03:22
I could have bet on that question. So great news about the two step therapy bills, especially in California, because California actually had a step therapy bill passed a long time ago, so this helped bring in some of the newer protections that advocates have been fighting for, so it strengthened the old bill. So step therapy bills, what it does is it provides protections against the insurance practice of requiring you to try and fail on a different medication before you could have the one originally prescribed. So basically, your doctor says I want you to take ‘x’ medication, insurance says no, you have to take ‘y’ and prove that it’s not effective before you could take ‘x’ and this law provides an exemptions process so you don’t have to do that.
Steven Newmark 04:02
Excellent work. We also got a few protections for surprise billing.
Zoe Rothblatt 04:06
Oh Yeah, this happened in the new year. I almost forgot about that.
Steven Newmark 04:10
If you go back way back when to episode two of season three from our show, we discussed that surprise billing is now illegal under the No Surprises Act.
Zoe Rothblatt 04:19
And surprise billing is literally what the name suggests. It’s just an unexpected bill but it’s usually for a substantial amount of money because, like you accidentally got care from a provider out of network, and the insurance company doesn’t cover services from that provider. Like, I’ve heard stories about: “Oh, the anesthesiologist wasn’t in the plan, and I got this huge bill.” So this is protections against that happening.
Steven Newmark 04:43
Yeah, so some great pieces of legislation around the country, and I would say a big thank you to our patients who helped us get these pieces of legislation passed.
Zoe Rothblatt 04:53
Yeah, we cannot do this without patient stories. Legislators can look at numbers in the bill all day, but hearing the voice from the person impacted ultimately really helps sway legislators to have these discussions with their peers and get stuff passed.
Steven Newmark 05:10
Absolutely. Some other highlights of 2022. We talked a lot about COVID this year, and also other infectious diseases such as mpox, polio… We talked about the idea of getting free tests from the government, and now the elimination of those free tests. What it means to live during an endemic and a pandemic. How the mRNA technology helps bring about new treatments for care. We talked about vaccine hesitancy and how it is affecting this pandemic, as well as winter flu season, and how we’ve said many, many times throughout 2022: it’s too soon to be totally over with COVID.
Zoe Rothblatt 05:45
Agreed. You know, it’s interesting when you parse out these different topics we’ve discussed because COVID can often become a blur and feel like we’re having the same conversation over and over again. But what stood out to me there, you just talked about the mRNA technology that is huge that that can help, you know, bring about new treatments for patients. Also free tests. I hope maybe that program gets mimicked in other health areas. I think there’s a lot to learn from what’s been going on.
Steven Newmark 06:12
Yeah, absolutely. We also met with many patient advocates on the air. I had some great discussions. I’m not going to go through all of them. I will just give a quick shout-out… oh, gosh, too many to name, but I thought it was really exciting to talk to Kellie Cusack who uses her background and interest in fashion to be a disability advocate. I found that to be a great conversation. Any conversations that stuck out for you in 2022?
Zoe Rothblatt 06:35
Yeah, you know, what really stands out was over the summer, we talked a lot about methotrexate access. When patients around the country were having trouble getting their prescriptions filled, or ultimately just worried about losing access to their medication. And we spoke to one of my friends Cheryl Crow, Arthritis Life Cheryl. She’s an occupational therapist, and rheumatoid arthritis patient, and she was following closely what was happening on social media. So it was cool to hear from her. And we also spoke to Dr. Donald Miller, who was a pharmacist, and we got to hear from his perspective about this access issue and what role pharmacists play in helping patients get medications.
Steven Newmark 07:13
Yeah, that was fascinating. We also had the good fortune to attend and report back on many conferences as well as advocacy days that we participated in.
Zoe Rothblatt 07:23
So yeah, what’s like one takeaway from each of these?
Steven Newmark 07:27
Yeah, so I had the good fortune of being able to attend the EULAR conference. That’s the European League Against Rheumatism conference. And one takeaway from that was that chronic pain was being called its own disease.
Zoe Rothblatt 07:40
Oh, yeah, that was really cool, and so important. So many people live with chronic pain and undiagnosed chronic pain so to hear it being recognized as its own could really lead to some advancements.
Steven Newmark 07:51
Yeah.
Zoe Rothblatt 07:51
You know, the next one, which just happened recently, ACR, the American College of Rheumatology, I attended both as GHLF staff, but also as a patient presenter and my main takeaway is just how important it is to insert the patient voice into these conversations that are just outside the doctor’s office and give doctors and patients the ability to communicate with each other.
Steven Newmark 08:14
Yeah, and we also did a bunch of advocacy on days virtually. And I think that the main takeaway from those various advocacy days around the states and in Washington DC, is that advocacy can happen over zoom and be effective. So it was great that we were able to do that this year.
Zoe Rothblatt 08:30
Totally agreed. And I’ve been a part of a few zoom meetings, and whether you’re with a legislator or their staff, I really feel like you do have that one-on-one time with them. Sometimes in person it can be a little chaotic and hard to feel that closeness, but I’ve actually really felt it translated well on Zoom. And then the other thing I’d say is, from the Advocacy Days, we’ve learned that we really need more representation and advocacy. It’s often the same group of people showing up and we need more diverse voices. And you know, we’re definitely trying to find those diverse voices and help them come along, because it’s really important to hear the stories of people.
Steven Newmark 09:10
So true… so true. So we did a lot in 2022 We’ve had some good successes. And of course, there’s still more to do. So let’s give a little preview of what’s on the horizon in 2023.
Zoe Rothblatt 09:21
Well, the COVID emergency is expected to renew so I’m sure we’ll keep talking about it and you know, regardless of its emergency status, so long as it’s affecting our community who lives with chronic disease, we’ll definitely keep talking about it.
Steven Newmark 09:37
Yeah, we will continue to advocate of course to get more bills passed and ensure patients have access to care and medications without obstacles.
Zoe Rothblatt 09:44
So key and just so frustrating that year after year, this has to be a priority, like I wish we could just get it all done and patients could have access and we could live in a perfect world but alas here we are. Keep advocating. And you know, ultimately also more coverage of our conferences and Advocacy Days and of course, bringing along wonderful guests.
Steven Newmark 10:05
Yeah. Well, before we close, I just want to say to you Zoe how great it’s been to do this podcast week after week with you. It’s been a real pleasure in 2022. I’m looking forward to continuing in 2023. And I hope that you will have some restful time as we get to the end of this year and celebrate the holidays with your family and to all of our listeners, Merry Christmas, happy Hanukkah, happy Kwanzaa, whatever it is that you celebrate, Happy New Year. If you celebrate nothing else, at least celebrate yourself!
Zoe Rothblatt 10:31
That’s a great message. Thank you so much, Steven. I’ve enjoyed doing this with you as well. And I’m just so grateful for our listeners that you know, they’re here tuning into us and we’re able to have this time and put a show on for everyone. And yes, Happy Celebrations everyone! We hope you have a relaxing time off. We’ll see you in the new year.
Zoe Rothblatt 10:51
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.
Narrator 11:05
I’m Steven Newmark. We’ll see you next year. Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
EXTRA Part 2- Non-Radiographic Axial Spondyloarthritis: A Conversation with Policy Expert Amanda Ledford and Patient Advocate Ricky White
In the second part of a two-part episode dedicated to non-radiographic axial spondyloarthritis (non-rad AxSpA), our hosts are joined by Amanda Ledford, Director of Policy at UCB, and patient advocate Ricky White, who lives with non-rad AxSpA. Amanda and Ricky discuss the advocacy efforts around helping patients receive a diagnosis and how policy and advocacy play a role in helping patients access affordable treatments.
“We’re really working to remove barriers to the providers’ ability to prescribe the most appropriate therapy to their patients. We feel strongly that decisions about the most appropriate treatment should be made by the health care provider and the patient rather than the insurance company,” says Amanda.


EXTRA Part 2- Non-Radiographic Axial Spondyloarthritis: A Conversation with Policy Expert Amanda Ledford and Patient Advocate Ricky White
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Amanda Ledford 00:06
“We’re really working to remove barriers to the providers’ ability to prescribe the most appropriate therapy to their patients. We feel strongly that decisions about the most appropriate treatment should be made by the health care provider and the patient rather than the insurance company.”
Steven Newmark 00:25
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 00:34
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:39
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 00:45
So Steven, we’re conducting part two of our episodes on non-radiographic axial spondyloarthritis. You know, what it is, how we’re dealing with it and what medical professionals are doing to help.
Steven Newmark 00:57
In our first episode, we talked to Ricky White about the struggles he’s gone through to get a diagnosis and feel better. We learned from Ricky how community is key in the non-rad axSpA journey as community brings support and information.
Zoe Rothblatt 01:09
We also heard from Dr. Jeff Stark who talked about the advancements in non-rad axSpA. I found it really interesting when Dr. Stark mentioned how non-rad axspa has traditionally been under recognized and undertreated but that there’s many efforts going on to improve diagnosis.
Steven Newmark 01:25
Yeah, and to learn even more today we will hear from Ricky and we’re also joined by Amanda Ledford, Director of Policy at UCB on how policy and advocacy play a role in helping patients and some of the challenges and advocacy around helping get patients diagnosed.
Zoe Rothblatt 01:41
So let’s introduce our guests. We’re joined today by Ricky White and Amanda Ledford. You all remember Ricky from our first episode on non-rad axSpA and he joins us again for part two. Amanda Ledford also joins us from UCB where she is Director of Policy. Amanda leads a host of public policy initiatives and strategies focused on improving access and removing barriers to care for patients, especially for those living with chronic and severe diseases. UCB and GHLF have worked together on several policy issues so we’re really excited to have Amanda here today. Welcome again, Ricky and welcome Amanda.
Ricky White 02:17
Thanks for having me.
Amanda Ledford 02:18
Thank you for having me today. I’m really excited to be here and join you and Ricky.
Zoe Rothblatt 02:22
Great. So let’s get started. Amanda, I’ll direct the first question to you. Let’s start talking about diagnosis codes called ICD-10 codes. I know there was a big effort in order to get a code for non-rad axSpA. Can you talk to us about that process? And then I’ll turn it over to Ricky after, to hear his thoughts.
Amanda Ledford 02:41
Thanks, Zoe. I’m happy to talk about ICD-10 codes. As you heard from my colleague Dr. Stark in the previous episode, the UCB team began hearing from patient and provider groups that there’s a need for an ICD-10 or diagnosis code for nr-axSpA. For medical professionals, these codes are common and they’re an important way that rheumatologists can identify patients as accurately as possible – separating nr-axSpA patients from other disease states. There may be differences in the way those patients respond to medications and knowing what to expect and choosing the proper therapy for a patient is critical. Having an ICD-10 code to reinforce the characteristics of a disease really helps to ensure that patients are diagnosed and treated accurately. However, administrative advancements always seem to lag behind regulatory and certainly scientific advancements. So even though the FDA had approved multiple therapies to treat nr-axSpA, and this was a big step and legitimizing the disease, there is still no ICD-10 code to help recognize nr-axSpA. So UCB worked with a wide range of stakeholders to submit an application to the Centers for Disease Control and Prevention or the CDC to obtain an ICD-10 code for nr-axSpA. The path to obtaining this code was a journey in and of itself and this committee accepts requests for coding changes only twice a year. Prior to October of 2020 there was no approved code of any kind for nr-axSpA. Patients were diagnosed using the spectrum of codes providers have available for ankylosing spondylitis. In 2018, UCB submitted an application for a new ICD-10 code. And then in October of 2020, we saw the first step in the right direction. The Coding Committee indexed an existing code to include nr-axSpA. This was progress but still it wasn’t a specific ICD-10 code for nr-axSpA, which is what we ultimately wanted. So with continuing advocacy from UCB, patient groups, professional societies, a new and specific code for nr-axSpA became effective October 2021. So we were very excited about that, because getting a specific code for the condition brings attention to the condition and legitimizes the disease. I know this is something that Ricky and Dr. Stark mentioned in the first episode particularly with respect to Ricky’s own journey.
Zoe Rothblatt 05:01
Yeah, Ricky, if you want to pick up there. Thanks Amanda for talking about that journey of, you know, how many years it took to get a code and then get a more specific code. It’s amazing to think about how many patients were left hanging. And Ricky, you are one of those patients. You told us in the first episode how you had to get diagnosed with ankylosing spondylitis, even though today, you would be categorized as non-rad axSpA. What does all of this bring up for you? Is there anything that stood out to you from what Amanda said?
Ricky White 05:31
Yeah, quite a bit. I mean, it’s great that this is now happening. It’s a shame, it wasn’t the case in 2010, when I was diagnosed. And like we discussed last time, yeah, I had to get a diagnosis of ankylosing spondylitis just to even get any treatment at all. And even with that, I was still refused treatment. So even with a diagnosis for ankylosing spondylitis, I still struggled to get treatment because although I had it on paper my clinical symptoms didn’t match up. And the NHS, which is what I was under, at the time back in England, they knew that my clinical symptoms didn’t match up to the diagnosis so they refused to fund the treatment. And I’ve heard very similar stories here in the U.S. You may have recalled, you know, I moved to the U.S. in 2014 so I’ve had the benefit of being in both health care systems and seeing how they work differently but for all the differences, there’s still a lot of similarity and getting disease codes like this is key for people to get the accurate diagnosis and then get treatment. I still hear today, people get misdiagnosed all the time and with a degenerative disease, it’s critical that we can get diagnosis and treatment done earlier because we can prevent so much damage and so much pain and problems in the long term if we can do that. And so this is just the first step of many to do that.
Zoe Rothblatt 06:42
I want to pick up on something you said talking about access issues and how the diagnosis is just one piece to like starting to get answers, but it ultimately can lead to some more obstacles along the way. Like you mentioned, you didn’t have the right criteria to get certain medications. Can you talk to us about the kind of access issues that you had and if you’ve heard from other patients about having them and what was going through your mind at the time?
Ricky White 07:09
Yeah, it’s something I hear a lot from other people. I’ve been more fortunate than some in my journey in regards to access. It helps to have a well-paying job and good health insurance and all of those kinds of things but not everyone has that privilege. So it’s really difficult, potentially, in somewhere as advanced as even the U.S. that there’s such a difference in availability across 50 states, and I hear everything from I can’t get any coverage at all, because of their disease and the requirements of their disease to: “Yeah, I get everything I want and it costs me very little”, and there is such a broad spectrum for many people. Again, I’m now in a place of privilege, where I have good health insurance and my costs are affordable to me, but not everyone’s the same. I mean, a lot of the anti-TNF injections that people take for non-rad axSpA and ankylosing spondylitis. If you look at the sticker price of those before the insurance, some people pay that out-of-pocket, and it’s, you know, upwards of $1,500-$1,600 a week and that’s not affordable for a lot of people. And so barriers like that certainly cause a lot of problems for patients. And so by having now this new diagnosis code, and then what will come with it is better guidance around treatment availability for those and then it’d be less of a kind of zip code lottery and more of a guidelines and standards approach, right? If you’re diagnosed with this, then these are the treatment options available to you based on clinical studies. That’s the place we want to get to. Getting the code is the first step.
Zoe Rothblatt 08:37
So Amanda, talk to us about how we get to that place that Ricky’s talking about where patients can have access to medications at an affordable and equitable place. What kind of work are you involved in at UCB to help move this along?
Amanda Ledford 08:52
Thanks Zoe, that’s a fantastic question. UCB is committed to promoting affordable and equitable access to care for all patients. And Ricky alluded to this. Ideally, we would like to see all patients have access to a range of affordable, high quality health insurance options that meet their needs, but also have transparent, reliable, formularies and affordable out-of-pocket costs. As far as specifics, we’re really working to remove barriers to the provider’s ability to prescribe the most appropriate therapy to their patients, we feel strongly that decisions about the most appropriate treatment should be made by the health care provider and the patient rather than the insurance company. One example is step edits, or the practice of forcing patients to try and fail on one or sometimes more drugs before getting access to the originally prescribed medication. Also restrictive formularies make it more difficult for patients to access the best treatment for their individual circumstances. UCB is working with a coalition of patient groups, including GHLF, so thank you for your continuing work and your leadership on this issue. We’re working with that coalition to advocate for step therapy override legislation at both the state and the federal level. Step therapy override legislation would create a process whereby a physician can override step therapy protocols under certain circumstances. For example, if the patient has already tried and failed on a particular medicine. And this creates a clear path to get the patient on the most medically appropriate treatment. These bills don’t prevent or prohibit step edits, but they do provide a clear pathway for providers to override health insurance plans’ step therapy requirements. To date we have seen a good bit of success at the state level, over 30 states have enacted step therapy override legislation and we are actively working to promote the Safe Step Act at the federal level when the new Congress arrives in January.
Zoe Rothblatt 10:48
Thank you, Amanda, all such important work. I know so many in our community deal with step therapy and you know, we always say that patients should have access to the right med at the right time and the one they originally agreed upon with their doctor. So let’s say that scenario is true and the patient does get the medication their doctor prescribed, there are often a lot of challenges around paying for treatment. Amanda, can you talk to us about this affordability and the concept of copay accumulator adjusters and what those are?
Amanda Ledford 11:20
Absolutely. Thank you for raising the issue. At UCB we want to preserve manufacturer’s ability to provide financial assistance to patients who aren’t able to afford the medications they need. We’re working to advocate for policies that would prohibit or at least curb the insurer practice of penalizing patients for accepting manufacturer assistance to help with out-of-pocket costs. Specifically, we’re working to advance legislation at both the federal and the state level that would prohibit or at least put some parameters around the use of so called copay accumulator programs. Accumulators are utilized by insurance companies so that they do not have to count manufacturer assistance towards a patient’s out-of-pocket maximum or their deductible. So as a result, individual patients can struggle to afford and adhere to their medications. But the insurers and the pharmacy benefit managers are the middlemen, they really shift more cost-sharing responsibility to the patients and siphon some benefit from the manufacturer assistant themselves. We are also working with several organizations to advocate for closing a loophole in the Essential Health Benefits requirements, which would no longer allow plans to employ so-called copay maximizer programs. These programs are a little less problematic for patients than an accumulator program because patients don’t see that huge mid-year “cliff” or high out-of-pocket payment. The maximizers still take part of the value of the manufacturer assistance from the patient to the benefit of the insurers. And those manufacturer assistance amounts don’t count towards the patient’s out-of-pocket maximum or their deductible amount. 16 states and Puerto Rico have already passed some form of copay accumulator legislation at the state level, and in Congress copay accumulators and maximizers continue to be a major priority for UCB. In 2023, we plan to work with our advocacy partners, including GHLF on commonsense reforms to help bring down costs for patients.
Zoe Rothblatt 13:24
Thank you, Amanda. It’s amazing to hear about the progress. To hear that 16 states and Puerto Rico have passed legislation to protect patients and help them get access to affordable medication is really huge. And like you mentioned, we’re hoping we can see action on the federal level. Ricky turning it over to you, what were you thinking about as Amanda discussed these maximizer programs where the payment made on behalf of a patient isn’t counted towards their deductible? Have you ever encountered something like this? Or do you hear from other patients about difficulty using their copay cards?
Ricky White 13:59
I’ve definitely heard about other people having difficulty for sure. It’s not something I’ve personally dealt with. But yeah, absolutely. And so the more things we can do… I think everyone would agree, the more things we can do to help make these medications and the correct medications more affordable for patients is a good thing. So I mean, my question would then be: how can I as an individual, or maybe as a local patient organization, what can we do to help pass these legislation at the state level? What can we do to get involved?
Amanda Ledford 14:25
Ricky, that is a fantastic question. And I know that at UCB these are issues that we believe strongly in, but we also recognize that patients are the best face and the best voice to take these issues to policymakers. So we do everything we can to support patients and their advocacy.
Zoe Rothblatt 14:42
I totally second everything Amanda just said. I think at the end of the day, policymakers can read the bill and look at the numbers, but you know, hearing a personal patient story can really sway the decisionmakers into understanding the real life impact that these policies have on people, to individual lives at stake. It’s… you know, their well being, it’s their ability to afford other things in their life and not just have everything about health so I think that including the patient’s story and all that you do to advocate is so important. And in thinking about how you Ricky or other patients can get involved, GHLF has a 50-State Network where we’re active in all 50 states and Puerto Rico and we always encourage advocates to join us and advocate with us whether it’s testifying, submitting comment letters, writing an op-ed about your experience. I think that the way you want to get involved in advocacy is really up to you and how you want to raise your voice. I’ll open it up, if either of you have any closing thoughts on today’s discussion, you know, whether it’s about the advancements in diagnosis, or helping patients get access to treatment. Ricky and then Amanda, either of your closing thoughts.
Ricky White 15:50
So it’s great to hear about all these new changes and the new ICD code. And this is only going to have trickle down effects, and so something I’ve been involved with is talking to patients on an individual level through our organization Walk AS One, and what we found is, because people have traditionally been diagnosed with other conditions or forms of ankylosing spondylitis, that’s the term they Google when they get home from the doctor. They don’t Google non-rad axSpA. And so by having that now recognized, it’s going to have a trickle down effect. So when they get home from the doctor, and they want more information or more support, they can now make sure they’re looking in the right places for that support. And then, you know, organizations like ourselves, and people like UCB, and you guys over there can make sure that the resources are there for them when they do do that Google search.
Zoe Rothblatt 16:38
Yeah, thank you Ricky. I think it’s so important that people can find information that they can relate to and not feel like they’re trying to squeeze themselves into somebody else’s diagnosis. And Amanda, I’ll turn it over to you, any closing thoughts on today’s discussion?
Amanda Ledford 16:53
Thank you, Zoe. First of all, thank you and Ricky for having me today and letting me be part of this conversation. It was fantastic to talk about the ICD-10 code for nr-axSpA and really excited and proud of our part in getting that for this patient community. It was also great to talk about the progress that’s been made towards increasing patient affordability and access to necessary medicines but as we all know, there’s still a lot of work left to do in this space. So I’m very thankful to have partners like you and like Ricky to work with us on these important issues.
Zoe Rothblatt 17:31
Well, Ricky and Amanda thank you so much for joining us today. It was really valuable to hear the insights from you about, you know, the policy changes and improving the lives of people with non-rad axSpA.
Steven Newmark 17:42
Yeah, that was great. It’s always fascinating to hear from a patient directly and of course, from someone like Amanda who gives the insight on policy and advocacy. This episode, as well as our first episode on this topic was made possible with support from UCB, sponsor of the Global Healthy Living Foundation. We’d love to hear from you about your experience with non-radiographic axial spondyloarthritis so send your email to [email protected]
Zoe Rothblatt 18:08
And who knows whatever you share, maybe included in our listener feedback portion of future episodes.
Steven Newmark 18:13
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 18:18
Well, everyone thanks for listening to The Health Advocates a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 18:32
I’m Steven Newmark. We’ll see you next time.
Narrator 18:38
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 12- China Eases “Zero-COVID” Policy: Insight on the Implications
In this episode, our hosts discuss China’s decision to roll back some of its “Zero COVID” policy by reducing testing and quarantine restrictions.
While easing these restrictions is in line with what has happened in the U.S., we can’t help but wonder – is China prepared to do so with low booster rates and no variant-specific vaccine? Our hosts also discuss what implications this has for the immunocompromised community.
“Because they’ve been sort of bottled up for so long, COVID is on the verge of exploding in China. They are already reporting very high numbers, nearly 40,000 new infections per day,” says Steven Newmark, Director of Policy at GHLF.


China Eases “Zero-COVID” Policy: Insight on the Implications
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
“Because they’ve been sort of bottled up for so long, COVID is on the verge of exploding in China. They are already reporting very high numbers, nearly 40,000 new infections per day.” 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 00:30
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:35
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. Before we get started, we want to be sure that everyone takes listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:48
We sure do and as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout-out to Let’s Get Personal, a podcast hosted by Dr. Daniel Hernandez. And it’s focused on the rheumatoid arthritis patient journey. So definitely take a listen.
Steven Newmark 01:05
Excellent. I look forward to that.
Zoe Rothblatt 01:06
All right, let’s start with the listener comment. Are you ready Steven?
Steven Newmark 01:10
I am ready.
Zoe Rothblatt 01:11
This one came from Stephanie W., who wrote: “Informative podcast for those who are chronically ill.”
Steven Newmark 01:16
Great, that’s what we try to do is to inform and we try to do it through the lens of the chronically ill community.
Zoe Rothblatt 01:22
Which is you know, if I could just have a little moment here, it’s so important because we’re often left out of the major news. So we just really want to insert the voices of our community back into the news.
Steven Newmark 01:33
Well, let’s get started! Today, we will talk about China, what’s happening with COVID over there, and ultimately what it means for our community. But first, we have a few news updates.
Zoe Rothblatt 01:42
We sure do. And the first bit of news: I saw 44 states are reporting high or very high flu activity.
Steven Newmark 01:50
Yeah, over the past two years masking and other pandemic precautions has kept the flu at lower rates and has left us for lack of a better term immunologically naive.
Zoe Rothblatt 01:59
Right, because you know, I haven’t gotten the flu since the pandemic started. So I definitely fall into that category. Although I have a vaccine so I do have some protection but none of that acquired immunity I think it’s called. Okay, so here are some numbers. The CDC estimates that so far this season, there have been at least 8.7 million illnesses, 78,000 hospitalizations, and 4,500 deaths all due to the flu.
Steven Newmark 02:27
Yeah, these numbers spiked after Thanksgiving, which is no surprise. And that’s a good reminder to try and stay safe for the upcoming holidays. You know, I’ve said this before I wear a mask, probably in larger part these days for the flu and other viruses than even for COVID in some respects.
Zoe Rothblatt 02:43
Yeah. And I know you always talk about how you and your family are always masking the week leading up to a gathering. And you know, it’s just a good idea.
Steven Newmark 02:50
I’m masked all the time, but that’s different. I know, I know. I’m in the minority. I get it.
Zoe Rothblatt 02:54
Yeah, well, extra cautious. And we’ve seen this year over year and the data shows that when we have gatherings these infectious diseases spread and the numbers spike. So it’s just a really good reminder that you know, we have the tools to stay safe. So as we go into the rest of the holiday season, you’ll consider what you can do to avoid getting illness as best you can.
Steven Newmark 03:17
Absolutely. In other news, the U.S. is going to formally end the Mpox emergency declaration.
Zoe Rothblatt 03:23
Yeah, and Mpox is the new term for monkey pox. And I saw that the Biden Administration recently announced that it doesn’t expect to extend the declaration of public health emergency for Mpox. And this declaration expires at the end of January.
Steven Newmark 03:38
Yes, the administration cited the low number of new virus cases as they announced these upcoming plans.
Zoe Rothblatt 03:44
And of course you know that doesn’t mean that there’s going to be no effort and no consideration of Mpox. It’ll still be monitored, and the case trends will be looked at closely. It’s just not in that emergency state.
Steven Newmark 03:56
Exactly. Just because something’s not officially an emergency doesn’t mean we stopped looking at it. In other news, you told me before we got on the air that you’ve got some new COVID-19 Patient Support Program polls to share.
Zoe Rothblatt 04:07
Oh, yeah, so these are always really fun because we get to learn what our community is thinking about and experiencing. So this time, we polled our support program on long COVID to learn more about if they’ve been diagnosed with it, and what symptoms they had. And you know, if they haven’t been diagnosed, ultimately what symptoms concern them.
Steven Newmark 04:26
Right.
Zoe Rothblatt 04:26
So are you ready to hear the results?
Steven Newmark 04:28
I’m ready.
Zoe Rothblatt 04:29
65% said they’ve been diagnosed or tested positive for COVID. And of that, 44% of those said they’ve been diagnosed with long COVID.
Steven Newmark 04:38
Wow. Interesting. What were some of the diagnoses that they reported?
Zoe Rothblatt 04:42
So yeah, it’s a great question. The most common symptoms they had were chronic fatigue, brain fog and shortness of breath. And what was also really cool was this lined up with the top symptoms people reported being worried about. I mean, I don’t know if that’s cool, because what people are worried about is actually what people are experiencing. But it was interesting to note that those lined up really well.
Steven Newmark 05:04
Interesting. Well, hopefully those folks with long COVID are taking the care that they need and will get better soon. And hopefully all of us will be in a better state as we enter 2023.
Zoe Rothblatt 05:14
For sure. I’m definitely hoping for continued research on long COVID Because we still have so many questions, but little polls like these help us learn a bit more and add to that.
Steven Newmark 05:24
Yeah, so in big news in our main discussion for today, we’re going to talk a little bit about what’s going on in China. As many of you are aware, China has this “zero-COVID” policy, which can be quite draconian in the way it treats its residents, but they’ve begun lifting some of its COVID restrictions, even though the government “zero-COVID” policy officially still remains.
Zoe Rothblatt 05:44
Okay, Steven, how come now China decided to lift the “zero-COVID” policy?
Steven Newmark 05:49
Well, there were essentially nationwide protests that began in late November after the communist government decided to stick with “zero-COVID” policies. And as you know, protesting in China is not a common occurrence. It’s not like the United States. And so the idea that protests were capable of even breaking out I think, really affected some of the Chinese leadership.
Zoe Rothblatt 06:07
So Steven, talk to me, what were the results of this? You know, where and how are they reducing the “zero-COVID” policy?
Steven Newmark 06:16
Well, more than 20 cities, including major cities, like Beijing, got rid of the requirements for negative COVID tests just to enter public transportation and other public venues and some residential compounds now allow infected residents with special needs to quarantine at home instead of be sent to a centralized quarantine.
Zoe Rothblatt 06:33
All seem very fair to me. I can’t imagine being sick with COVID and having to quarantine in a centralized facility and not in the comfort of your home as someone that’s chronically ill we rely so much on like the safety of our home and you know, just having loved ones around. Now obviously, if you have COVID you can’t necessarily have loved ones around but just having the things that you need.
Steven Newmark 06:54
Yeah. Well, your loved inanimate objects, if I can, my iPad.
Zoe Rothblatt 06:59
Exactly. Your cozy blankets, anything you need…
Steven Newmark 07:03
My books!
Zoe Rothblatt 07:03
I can’t imagine having to go somewhere else. It’s pretty scary. So I am glad to see some of these. I don’t even know if you could call them precautions.
Steven Newmark 07:12
Well, just the idea. Imagine having to show a negative test every time you ride public transportation. I mean, how would you get around?
Zoe Rothblatt 07:18
I mean, I would never go anywhere. Yeah.
Steven Newmark 07:21
You can’t get around. You’d have to take a test, like every three hours. It’s Looney Tunes.
Zoe Rothblatt 07:25
Yeah. And like if you think about even just like having to go to the doctor like just like basic things that you need to do. It’s like an extra step. It’s already hard enough, let’s say to get to the doctor, because you need insurance approval, you need to get an appointment. There’s all these wait times, and now you have to get a test. Like it just doesn’t stop.
Steven Newmark 07:42
Yeah, well, here’s the downside. Because they’ve been sort of bottled up for so long. COVID is on the verge of exploding in China. They are already reporting and this is from China. So we don’t even… we can’t even verify how accurate this is. But they’re already reporting very high numbers, nearly 40,000 new infections per day.
Zoe Rothblatt 07:59
So let’s talk about what factors are at play here because China does have a highly vaccinated population. About 90% are vaccinated with the primary series, which just for context, in the US, we have about 68% that are fully vaccinated.
Steven Newmark 08:17
Yeah, but they’re not using the same vaccines as us they refuse to use our American vaccines. Their vaccines are called Sinovac and Sinopharm. These are inactivated vaccines that are just not quite as effective. These are vaccines that were developed, of course, early on in the pandemic, they’re refusing to accept our boosters, which are more Omicron specific and do a better job, not to mention on top of that boosters generally lag. While you mentioned 90% of folks have been vaccinated for the primary series, the number of folks who have gotten boosters is well below that. In fact, one number I did see is that only 30% of 80 plus year olds have had a booster shot in China
Zoe Rothblatt 08:57
Well, and we know how important the boosters are because your immunity wanes. We have these new variants that require more targeted vaccines. So it’s one thing to say you have a highly vaccinated population. But then when you look deeper, and you say, okay we’re not as highly vaccinated as we thought because we’re lacking in the quality.
Steven Newmark 09:15
Right. And don’t forget, they’ve had a lot less folks who’ve been infected. So their infection induced immunities is very low.
Zoe Rothblatt 09:22
That’s true, you know, with “zero-COVID”, people haven’t been getting infected, so they don’t have that immunity.
Steven Newmark 09:28
Epidemiologists are warning that the country is not prepared for wave of deadly COVID infections that it may face from Omicron very soon.
Zoe Rothblatt 09:36
And while we know that Omicron is less deadly than Delta, because we’ve seen that with data here, we’ve still seen how it can be deadly for people with no vaccine protection and vulnerable groups. So it’s just really important to remember that aspect of it.
Steven Newmark 09:51
Absolutely. And you know, if we’ve learned anything from this pandemic is that what happens in China affects everyone around the globe, everyone, right?
Zoe Rothblatt 10:00
Right! Yeah, I was about to ask, you know, what does this mean for us in our community?
Steven Newmark 10:04
Yeah.
Zoe Rothblatt 10:05
Of course, you know, we’re a global society. New mutations can arise that can come our way. Right. You know, we’re not in this COVID fight alone.
Steven Newmark 10:14
Yeah, exactly. So as we know, the virus began in China… began with, you know, one case, a handful of cases, whatever it was, and it became what it became. And you could have said two, three years ago at this point, oh gosh, I’m losing track of time, you would have said: it’s only a few cases in China. But look what happened. So now you have a situation where, again, in China is over a billion people. And as we mentioned, the population just doesn’t have the protections that we have here. The Chinese government is refusing to accept the boosters that are Omicron specific, even though that’s the dominant strain. Now, they’re not taking proactive measures to get folks boosting at all in the way that other countries around the globe have. And you have a population that just has a much lower rate of infection induced immunity. So it’s a little bit of a powder keg, and we’ll cross our fingers and hope for the best.
Zoe Rothblatt 11:01
And a population that’s over it. You know, they’re in the streets protesting because they don’t want the “zero-COVID” policy. I can’t speak for the Chinese population but it must be really disheartening to know that there are vaccines across the world that are working to protect and you have to be so isolated and following all these strict rules.
Steven Newmark 11:22
Yeah, no, absolutely. Many political commentators suggest that the ruling party in China has instituted these rules less for public health measures and more as the ability to design a more authoritarian regime. Because certainly, it’s not working to help in the public health interest. At some point, China is going to open it as we mentioned, it’s starting to open now, and they’re going to be in a more vulnerable state as a result.
Zoe Rothblatt 11:45
And you know, that just makes my heart go out to our immunocompromised friends in China. We know people here are feeling alone and isolated. I imagine that’s just so much more heightened over there.
Steven Newmark 11:56
Definitely. Well, like I said, I wish we could do something better than just cross our fingers. But for now, we’ll have to hope for the best.
Zoe Rothblatt 12:03
Yeah, we’ll keep having these discussions. You know, I think that’s also important just to talk about it.
Steven Newmark 12:08
Absolutely.
Zoe Rothblatt 12:10
Okay, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 12:14
I thought it was interesting that of those in our patient support program who responded to the poll 44% have said they’d be diagnosed with long COVID, you know, suggesting the interplay between Long COVID and chronic illness.
Zoe Rothblatt 12:27
And you know, I learned from you about what’s going on in China with the reduction of the “zero-COVID” policy.
Steven Newmark 12:35
Well, we hope that you learn something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 12:45
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 12:51
Also email us you want to subscribe for our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 12:56
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 13:10
I’m Steven Newmark. We’ll see you next time.
Narrator 13:16
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 11- Building a more just and equitable medicines system for all – with Priti Krishtel from I-MAK
Millions of lives are at risk worldwide because of unjust systems that prevent those who are most vulnerable from getting the medicines they need. Even in the U.S., structural inequities exist and remain prevalent, despite appeals for their elimination.
In this episode, Priti Krishtel, a health justice lawyer and Co-Founder and Co-Executive Director of the non-profit organization I-MAK, shares how her organization advances solutions to address structural inequity in the medicines system through research, education, and policy.
“I think in the U.S. we have a real problem now. And that’s why so many people are speaking out to say prescription drugs should not be priced this high,” says Priti Krishtel.


Building a more just and equitable medicines system for all – with Priti Krishtel from I-MAK
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Priti Krishtel 00:06
“We were working in the Global South like India or Brazil, countries that had the ability to produce medicines themselves, and there we saw a lot of wins. You know, we were able to reform patent law to have more safeguards for health. But I think in the U.S. we have a real problem now. And that’s why so many people are speaking out to say prescription drugs should not be priced this high. We’ve got to have a way to rein in these costs!”
Steven Newmark 00:36
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 00:46
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:51
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. Before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts, we have so many to choose from.
Zoe Rothblatt 01:04
We sure do and as a reminder, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shout-out to Talking Head Pain. Joe, the host of the show recently attended the American Headache Society Conference and just has some really great conversations with experts there. My personal favorite was a quick episode on the link between migraine and COVID. So definitely check it out.
Steven Newmark 01:28
Yeah, I had the good fortune to join Joe at the American Headache Society Conference and it seems like he was interviewing anyone and everyone and all the most interesting conversations he had are now being posted. So I look forward to listening.
Zoe Rothblatt 01:40
Awesome. Well, we have a listener comment. Are you ready, Steven?
Steven Newmark 01:43
I am ready.
Zoe Rothblatt 01:44
This one is from Diana W. who wrote: “Thanks for the Thanksgiving talking points. It really sparked great conversation.”
Steven Newmark 01:50
Oh, well, thank you, Diana. Hopefully the conversation was civil, to say the least. And we hope you and all of our listeners had a great Thanksgiving.
Zoe Rothblatt 01:58
Yeah, amen to that. I had a really nice Thanksgiving. How about you Steven?
Steven Newmark 02:01
It was good. It was good. I unfortunately over ate, I guess that happens. Yeah. But you know, what can you do? You got to atone the week after I guess.
Zoe Rothblatt 02:09
Me too! Well, today I’m really excited for you to hear the interview I had with Priti Krishtel, a health justice lawyer and co-founder and co-executive director of I-MAK, which is a non-profit building a more just and equitable medicines system. And I spoke with her about patient access to medication and the importance of bringing patient voices into the decision making process. So I’m just excited for you and our listeners to hear it.
Steven Newmark 02:35
Great. I’m excited to listen. But first we have some news updates. A first thing you should know is that Twitter has stopped enforcing COVID misinformation policy.
Zoe Rothblatt 02:44
Yeah, this put a pit in my stomach when I saw that. You know, it could have really serious consequences and just lead to even more false claims about COVID and the vaccine than we’ve already seen.
Steven Newmark 02:55
Definitely. There’s a lot of dealings and goings happening over in Twitter land. So you know, COVID seems to be a part of that. And certainly COVID misinformation. Elon Musk introduced his policy recently, and it counters a policy that Twitter introduced in January of 2020.
Zoe Rothblatt 03:10
I saw that when they first enacted that, more than 11,000 accounts were suspended for violating the rules, and nearly 100,000 pieces of content were removed from Twitter. So that means I guess all that could be back now which is scary.
Steven Newmark 03:26
Oh, absolutely. The problem is, it’s larger than one platform. Elon Musk likes to call Twitter, the virtual town square, where people come together to exchange ideas. And he’s into protecting free speech and all this kind of stuff, which is great but you know, the analogy doesn’t fully hold. A town square in the golden days was a place where a handful of people or a dozen people or several dozen people got together. But misinformation that spreads on the internet, particularly a place like Twitter, can reach millions of people in a matter of seconds, let alone minutes and days. And influential people who have influence over others, people who are respected and looked up to start to spread this misinformation as well. And it starts to get into people’s brains.
Zoe Rothblatt 04:08
And like you said, it’s not just Twitter, it’s all of social media. It’s really a problem. We’ve been working hard the whole pandemic to counter that misinformation with things like our COVID Support Program, which is still ongoing, and people can sign up for it. And you know, we really try to look to experts, specialists, you know, doctors and patients to say: “Here is actually informed and evidence-based information that we can give out.”
Steven Newmark 04:34
Right. And again, one of the problems with Twitter and other social media is they have these algorithms where you’re only seeing certain select feeds based on your individual user algorithm. So you may only be getting the misinformation. But you know, the only thing I could say is the best way to combat this is by promulgating more truthful statements and the more that we can get our truthful statements out there regarding, not just COVID-19, but you know just the idea of what it’s like to live with a chronic condition. It’s the best way to combat it and hopefully break through to some of these algorithms to some of the folks that you may know.
Zoe Rothblatt 05:08
Well, in other COVID news a big topic is Evusheld. Evusheld is the preventative COVID treatment for people immunocompromised, and I saw in a recent statement by the National Institutes of Health, the NIH, said that, you know, the new subvariants are likely resistant to Evusheld.
Steven Newmark 05:25
Yeah, Evusheld as a reminder, as you mentioned, is the preventive COVID treatment for people who are immunocompromised, and it’s disheartening to hear that the new subvariants are likely resistant to Evusheld but what can you do? Well, you know, advocate for yourself, as we always say, talk to your doctor and make a plan for if you do get COVID.
Zoe Rothblatt 05:43
Yeah, and you know, you still get some protection from Evusheld, and some protections is of course better than none, right? It’s not saying it’s totally ineffective, it’s just waning in effectiveness. But you know, still talk to your doctor about getting that. But also, in that case, the bivalent booster is becoming even more important to make sure you have all the layers of protection you could possibly have.
Steven Newmark 06:04
Right, absolutely. Moving on, December 1 through December 7 marks Crohn’s and Colitis Awareness Week.
Zoe Rothblatt 06:11
Yeah, this runs every year during the first week of December, and it’s really a good time to just spread awareness and raise the voices of people living with Inflammatory Bowel Disease (IBD), which is the umbrella term for Crohn’s and colitis. So okay, Steven, here’s some fast facts about IBD. Are you ready?
Steven Newmark 06:29
I’m ready.
Zoe Rothblatt 06:29
So according to the CDC, around 3.1 million adults in the U.S. have been diagnosed with IBD, and around 7 million people worldwide have IBD.
Steven Newmark 06:40
Wow. Well, I’m no stranger to IBD myself so that’s not too surprising. It’s unfortunate, but not too surprising, I would say. I also know that the main symptoms of IBD are abdominal pain, chronic diarrhea, rectal bleeding, weight loss and fatigue.
Zoe Rothblatt 06:54
And you know, you said it, there are chronic, there is no cure. It’s a chronic disease. And there are great advancements and medications and you know, in serious cases, you might need surgery that that can help you reach remission. So although there’s no cure, you know, there’s a lot of stuff going on that can help patients live healthy and meaningful lives with IBD.
Steven Newmark 07:13
Absolutely. So this is a great week to raise awareness for patients with Crohn’s and Colitis.
Zoe Rothblatt 07:20
So like I mentioned, we have a special guest here with us, Priti Krishtel, a health justice lawyer and co-founder and co-executive director of I-MAK, a non-profit building a more just and equitable medicines system. She has spent nearly two decades exposing structural inequities affecting access to medicines and vaccines across the Global South and in the United States. That includes advocating for equitable access to COVID-19 vaccines across the globe to ensuring that the Biden-Harris administration is prioritizing equity in the Patent and Trademark Office. Well, Priti welcome to The Health Advocates.
Priti Krishtel 07:54
Thank you. Thanks for having me.
Zoe Rothblatt 07:56
Awesome. We’re so glad to have you here. Why don’t you start off by telling us a bit about your organization and its mission and how you got started in this work?
Priti Krishtel 08:04
Sure. So we started working on this issue at the peak of the HIV epidemic. So early 2000s, where drugs had come to market for HIV, but weren’t reaching people worldwide who needed them. And that’s where me and my co-founder Tahir first met. We had both gone to India, purely by chance, he was a private sector lawyer who represented big companies on their intellectual property or their patents. And I was a health justice lawyer working with clients who lived under the poverty line who couldn’t afford their medication. And when we met, we realized that a lot of the reasons drugs were coming to market, but then not reaching patients who needed them was because of the way the patent system was being misused. Many of the biggest drug companies were saying that they couldn’t allow for competition, they couldn’t allow prices to come down, and that there was no way to do it. And at the time it was generic companies in India and all over the world who said: “Actually, that’s not true.” This is a worldwide health epidemic, and we can make sure it happens. So we started I-MAK then, and we’ve been working together with our team ever since. And, yeah, we’re coming on almost 20 years of doing that work now.
Zoe Rothblatt 09:17
That’s awesome. Congratulations on almost 20 years! And as you say that it makes me think what change have you seen in the last 20 years? Have there been advancements in getting patients the medications that they need, like you’re talking about?
Priti Krishtel 09:31
Yeah, you know, it’s really interesting, because we were working in the Global South, like in really, usually middle income countries that have really huge populations living in poverty, you know, India or Brazil, other countries, and countries that had the ability to produce medicines themselves. And there, we saw a lot of wins, you know, we were able to reform patent law to have more safeguards for health. We were able to bring cases alongside people living with diseases who are directly affected, to be able to say: “Hey, you know, patents are supposed to be a reward for when somebody invents something.” But when the system starts to get misused, they start to basically build these patent walls, and they start to extend their monopolies longer than they should have them and prices go up and patients don’t get access. So we were able to win legal cases, reform laws, start to change the public conversation. But then in about 2015, we started getting calls from the United States, because you know prescription drugs spending, I think, has increased about 60% over the last 10 years in the U.S. Like it’s at $400 billion today, which is much higher than it used to be. And we started to get calls saying: “Can you come see whether we have a patent problem here in the US too?” Like: is this system not working as intended? And so through all of our research here, we started to realize that yes, actually, like drug makers here, the biggest drug makers, on the most profitable drugs are actually like filing for and getting hundreds of patents on the top selling drugs. And so, you know, your question like: “Is it getting better?” Well, in some cases, it got better globally. But I think in the US, we have a real problem now. And that’s why so many people are speaking out to say prescription drugs should not be priced this high. They shouldn’t cost the country, you know, public payers like Medicare this much. We’ve got to have a way to rein in these costs.
Zoe Rothblatt 11:27
Yeah, especially for the community that our organization serves with chronic disease. It’s like a lifelong condition that you keep having to pay these high prices. It’s really, really challenging when you’re already managing your health to also be strapped with financial decisions like that. And I wanted to ask about your Participatory Change-Making tool and how that fits into this discussion around patents and hopefully changes.
Priti Krishtel 11:53
Yeah, so you know, we spend a lot of time as I was saying, like, using our research to expose the problem, making sure that the press and policymakers and the public knew that this gaming of the patent system was really happening and eroding and diluting its original intent. What happened next is we started to observe the way that law reform usually happens in the U.S. is that it’s those with the deepest pockets who are able to lobby Congress. And so we built Participatory Change-Making to really make sure that people who are being affected would have a seat at the table with policymaking around medicines. We focus first on patents because it’s, you know, kind of the core of our work and usually with patent policymaking, it’s only major corporation who have a seat at the table. So for example, the patent the Public Advisory Committee to the Director of the Patent and Trademark Office, you know, it doesn’t have patient groups or affected communities. So we’ve been making a big push with the agency that that needs to change, but Participatory Change-Making, or PCM, that’s our program, we convene different stakeholders together. And so we make sure that Patent Office officials for example are at the table with people living with cancer, or arthritis, or diabetes, or other conditions, so that they can hear directly from communities who are affected. But in the spirit, also of making sure that our democracy survives in this moment, like, because America is so polarized, because we’ve lost our way on… in general, being able to have difficult conversations across difference… What we do is we bring together a pretty broad-ranging set of stakeholders. So you might have lawyers for the pharmaceutical industry at the table or investors, or patent judges, or academics. And really, by having that very big table with a lot of diverse viewpoints represented, not just like ideological or political differences but also just people who have a different lens on the system, the idea is that people’s understanding of the system would be deepened, and then better policy would come out of it. So policy development could happen in a really informed way.
Zoe Rothblatt 14:05
Yeah, that’s amazing. Thank you for all that you do to make it an inclusive conversation and bring in so many voices. I want to quickly ask what’s it like bringing all those groups together, and if there’s, you know, a memorable moment from a patient interaction that you remember?
Priti Krishtel 14:20
Yeah, in our last convening, we had different government agencies represented, different types of sectors, even because the patent system affects not only pharma, but also tech and, you know, other stakeholders. And so it’s a very diverse room in terms of viewpoints. And we asked some of the people living with cancer or diabetes to open up to us and just make sure that they grounded us in the stories of the impact of the cost of medicines on the real lives. And we got to hear, you know, just that, and I think it sort of anchored us in the policy conversation and that perspective. And then a very rich conversation ensued, where we were talking about the wonkiness of policies about the intersection of the patent office and the FDA. And then at one point, we were really, you know, a bunch of us or lawyers or policy people were getting into it, and I remember somebody from T1International, which is a diabetes advocacy organization, spoke up and said: “Can I just ask, does this actually have anything to do with my life?” And we looked at the policy we were discussing again, and we realized that actually it wouldn’t have an impact, you know, down the line in terms of the cost of medication, you know, to an individual patient or family. And so it really was such an important and powerful course correction that I realized, like we have to keep going, we have to keep pushing government to engage in this type of participatory policymaking, because right now, it’s happening in a very top-down way, and it’s not going to have an impact on people’s lives unless we keep building that bigger table.
Zoe Rothblatt 15:51
That is such a good point! Always remembering that at the end of the day it’s, you know, the patient at the center of these conversations, and that’s, you know, whose life is really at stake here. My final question for you is, you know, what advice do you have for someone looking to get into this type of advocacy? Maybe a patient wants to get involved and raise their voice. What, what would you like to impart to them?
Priti Krishtel 16:14
Yeah, I mean, I’m told as a lawyer regularly that these are technical conversations that you need the facts and the evidence. And that you need to be an expert to have your voice heard. That’s the message that comes from those who want to uphold the status quo. Because it’s the status quo that makes people… you know, there’s billions of dollars on the table, people have a vested interest in maintaining it. And I really urge everyone to see through that and to know that it’s not true, and that if it’s so complicated, we as the public can’t understand it, then it’s actually the wrong system for us. One direct way to get involved is there’s an organization called Patients For Affordable Drugs that we work with quite closely, that spans different disease areas. And so I always encourage everybody to look at their website, or sign up for their newsletter, because they put out regular briefings on the different issues coming out of DC that people may want to get involved with. And if you’re interested in learning about what’s happening with patent reform specifically, you can sign up for our newsletter as well, you can go to our website, I-MAK.org. And then you can click on the thing that says ‘join us’, and then you’ll get our newsletter every month at that point.
Zoe Rothblatt 17:24
Excellent. We’ll be sure to include that in our show notes. Well Priti, thank you so much for joining us today on The Health Advocates and sharing about all the amazing work you and your organization do. We appreciate you.
Priti Krishtel 17:34
Yeah definitely. Thank you so much for everything you all do as well.
Steven Newmark 17:39
Wow. Yeah, that was fantastic. It was really great hearing from Priti about all that she does on behalf of patients, and particularly as a lawyer myself, I was fascinated to hear about how to use the legal system. In fact, I’m going to preempt you by saying that was my learning today.
Zoe Rothblatt 17:54
Oh, yeah. I was about to ask, you know, it’s the close of our show, what did you learn, so I will share that I was reminded by Priti about the importance of bringing the patient voice into conversations especially among decision makers.
Steven Newmark 18:07
Well, we hope that you learn something too. We’d love to hear from you about your advocacy stories. Send us an email at [email protected] We hope to hear from you soon.
Zoe Rothblatt 18:18
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 18:23
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 18:28
Well, everyone thanks for listening to The Health Advocates a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts. And also check us out on YouTube. I’m Zoe Rothblatt.
Steven Newmark 18:43
I’m Steven Newmark. We’ll see you next time.
Narrator 18:49
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 10- Talking Turkey Day and COVID
While COVID-19 vaccines and medications are largely available, this year’s celebrations will not be without risks, especially for the chronic disease community.
Our hosts discuss their plans for Thanksgiving and share their tips to stay healthy and to help advocate for communities that are at higher risks from COVID. “If you have loved ones or you’re surrounded by folks who may not be as sympathetic or as understanding to getting the vaccine or wearing masks, the best way to listen is to listen with empathy. It may be difficult to listen if you hear loved ones repeating false claims about the vaccine, masking or COVID, but if you immediately shut down their concerns, they may not listen to you in return,” says Steven Newmark, Director of Policy at GHLF.


Talking Turkey Day and COVID
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
“If you have loved ones or you’re surrounded by folks who may not be as sympathetic or as understanding to getting the vaccine or wearing masks, you know, the best way to listen is to listen with empathy. It may be difficult to listen if you hear loved ones repeating false claims about the vaccine, masking or COVID but if you immediately shut down their concerns, they may not listen to you in return.”
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 if at 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 00:45
Hey Zoe, it’s Thanksgiving time, my favorite time of the year.
Zoe Rothblatt 00:48
Me too. I love it so much.
Steven Newmark 00:51
I do too. I like to overeat. I accept that it’s okay. Moderation is great, but only in moderation, as they say. So Thanksgiving is a good day to break from that moderation though, right?
Zoe Rothblatt 01:00
Yeah, you have to indulge a little bit. You know, the crispy marshmallows at the top of the sweet potato, something that you would probably never serve any other day of the year but it’s totally acceptable to have dessert on the table at Thanksgiving.
Steven Newmark 01:14
Umm marshmallows. That is true. I always say, 364 days a year, I cannot recall ever eating a whole turkey in my life, ever.
Zoe Rothblatt 01:23
It’s so fun. I love the indulgence.
Steven Newmark 01:25
Totally. And it’s so American.
Zoe Rothblatt 01:27
Yeah. Well, this year is my first southern Thanksgiving. I’m staying in Nashville. So we’ll see how that goes.
Steven Newmark 01:33
Excellent. So you’ll see a different part of the country. That’s very exciting. Well, today, on today’s special episode, we’re going to talk about Thanksgiving. And we’re going to do our annual Turkey Day talking points and how to talk to some of your relatives about what you’re dealing with as you go through your daily day with a chronic illness or as an advocate for folks with chronic disease.
Zoe Rothblatt 01:52
You know, the dinner table and like that fun environment we were just talking about is such a great time to educate loved ones about living with a chronic condition, the advocacy you do, it feels like pretty low stakes because you know, everyone’s just sitting around anyways. It’s not like you’ve called this big meeting.
Steven Newmark 02:09
Right?
Zoe Rothblatt 02:09
And people are in a good mood and having fun. And yeah, it’s just a great time to talk about these concerns that you have.
Steven Newmark 02:15
Yeah, and whether you’re with friends or family or neighbors, you know, hopefully there’s a celebration of love in the room, and it will be an easy time to talk with folks. Yeah. And you know, of course, we’re not ignoring that COVID is still very real. We know that many will be celebrating over zoom or with smaller groups. And that’s actually exactly what we want to talk about. We’ve said it once, we’ll say it again, you know, it feels like a lot of the general public is back in ‘normal life’, quote, unquote. Mass mandates have been lifted, work-from-home employees returned to offices, and many have just resumed pre-pandemic ways generally. And I’ll say it, you know, things aren’t cut and dry for those of us living with chronic illness. Yeah. And it’s a great idea whether you’re over Zoom or in person to start a conversation about your health and why it is important to stay safe from infectious diseases like COVID-19, and the flu.
Zoe Rothblatt 03:06
So Steven, you know, sometimes these conversations can be really hard to have, especially like everyone these days thinks they’re a public health expert.
Steven Newmark 03:13
Right?
Zoe Rothblatt 03:14
And sometimes it can feel really combative. So what are a few good ways to get going and even start having a conversation like this?
Steven Newmark 03:22
Yeah, I mean, even just starting the conversation is probably the most difficult part. But you can begin by explaining why you got involved with GHLF and the 50-State Network. You can share your personal story to the extent you’re comfortable doing that. You’re likely used to explaining your chronic illness and how it impacts your life so you can go into these conversations knowing that you’ve done this clearly, firmly and successfully before. You can explain your diagnosis and how it may put you at higher risk of severe COVID-19.
Zoe Rothblatt 03:49
Yeah, that’s a really good point. Just start out by making it about you and you know, like the focus on why you advocate, why you’re at severe risk maybe, and your chronic condition and just really making it about: “Hey, guys, I want to talk about these things that are important to me.”
Steven Newmark 04:05
Absolutely. And then you can easily transition into why wearing a mask helps protect the chronic disease community. Some folks are still questioning the use of masks but you could explain that people who are immunocompromised because they take immunosuppressive medication may still be vulnerable to COVID-19 after being vaccinated since we don’t have enough data yet on how well the COVID-19 vaccine protects these individuals. For now, many experts recommend that immunocompromised patients continue to follow standard mitigation efforts like wearing a mask even after they’re fully vaccinated.
Zoe Rothblatt 04:35
Yeah, that’s a really good point. Like it’s not coming out of nowhere, doctors and experts are saying that you should still wear masks and that they are protective. And it definitely helps. I feel more comfortable when I see someone wearing a mask. I know we’ve talked about this. It’s like you’ll get a little smile like: “Oh, that’s my companion out in the wild.”
Steven Newmark 04:52
Yeah, I feel that for sure!
Zoe Rothblatt 04:54
So what about the vaccine? This conversation can get really tricky and uncomfortable. How would you broach that topic with friends and family?
Steven Newmark 05:03
Yeah, again, I will explain that getting vaccinated helps protect the chronic disease community. It protects you, of course, but it also protects the broader community. Public health experts, medical organizations, doctors and specialists have stated that the COVID vaccine is safe and recommends that patients should get vaccinated unless they have a specific contraindication like an allergy to a vaccine ingredient, but concerns remain about whether the vaccine may be somewhat less effective in these patient groups compared to the general population, which makes it all the more important for the loved ones of immunocompromised individuals to get vaccinated too.
Zoe Rothblatt 05:38
Yeah, I’ve been on like a mini campaign these past few weeks to get my loved ones the flu shot and the bivalent booster and it’s going well so far but you know, sometimes it takes a little push to get your loved ones vaccinated.
Steven Newmark 05:51
Yeah, and if you have loved ones, or you’re surrounded by folks who may not be as sympathetic or as understanding to getting the vaccine or wearing masks, you know, the best way to listen is to listen with empathy. It may be difficult to listen if you hear loved ones repeating false claims about the vaccine, masking, or COVID but if you immediately shut down their concerns, they may not listen to you in return. So in this situation, it can be helpful to focus on sharing ideas and having facts ready. Instead of telling others they are wrong, you can explain why you feel otherwise and how staying safe is important to your health.
Zoe Rothblatt 06:24
Yeah, I think that’s a really good point, listening with empathy and also making it about you. Sometimes the news is just so general, and you know, this is good, this is bad, must do, can’t do… And when you bring it down to the personal level about, you know, why you need to stay safe and effective and what your loved ones caring for you means, I think it helps shut down a lot of those concerns.
Steven Newmark 06:47
Absolutely. And when you do have a sympathetic ear, definitely mention the 50-State Network, you can encourage your family and friends to become advocates and join our 50-State Network.
Zoe Rothblatt 06:56
Yeah, we have advocates all over the country and all 50 states and Puerto Rico and you know, we do trainings, and we have some really exciting stuff coming up for 2023. So definitely encourage those around you to get active.
Steven Newmark 07:08
Well, I’m very excited for tomorrow. It’s gonna be a great feast. What are your plans Zoe for Thanksgiving?
Zoe Rothblatt 07:13
So it’s my first Southern Thanksgiving. I’m staying down here in Nashville.
Steven Newmark 07:17
Excellent.
Zoe Rothblatt 07:18
My mom is coming down. So you know, I’ll show her around. We’ll have lots of fun. I’m excited. You know, just to switch up the Thanksgiving traditions this year. Yeah. And, you know, just see how it’s done down South. It’s really exciting. How about you, Steven?
Steven Newmark 07:32
I will be at my wife’s family in Pennsylvania. And I absolutely just love it. It’s a few days of just vegging out. I turn my phone off. I don’t open up a laptop. I try to just veg out. I’m also extra excited this year because the World Cup is going to coincide with Thanksgiving holidays. So I get to watch that as well as American football on Thanksgiving itself. So my brain is gonna be nice and shut off.
Zoe Rothblatt 07:55
Well I’ll be tuning into the Thanksgiving Parade. The Macy’s Parade is a crowd favorite in my family.
Steven Newmark 08:01
Yes! Let me tell you two quick things. The first is when I was a little kid I grew up right outside of New York City. Every year, I would watch the Macy’s Thanksgiving parade, every year I would ask to go see it and every year my parents said maybe next year. And I never got to go and I’m so upset. And I really want to take my kids. Now they live in New York City but of course every year we go to Pennsylvania so I’m never in town.
Zoe Rothblatt 08:22
Well, something cool is also seeing the balloons blow up like the day or so before. Totally. But you risk getting stuck in all the traffic if you hang around in the city too long. Well, sounds like it’s gonna be a fun one this year. You know, I’m definitely feeling good going into Thanksgiving with the bivalent shots. You know, we still have the rapid COVID tests. I feel like we know how to stay safe or you know how to try to stay safe and we can implement those as best we can. But ultimately I’m feeling a bit hopeful to have some in-person fun this year.
Steven Newmark 08:55
Yeah, me too. My family, we tried to time it as best as possible. We got most of our flu and COVID boosters roughly at the three week mark before and we’re all in N95 masks like crazy the week before for the last week. So you know we’re gonna test and we’ll see and I’m pretty hopeful though.
Zoe Rothblatt 09:12
I’m hopeful to! Well, Steven, I hope you have a happy Thanksgiving and to our listeners as well enjoy the holidays. We hope you have time to just relax and take it easy. Well, happy holidays everyone and thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 09:42
I’m Steven Newmark. Happy Thanksgiving everyone!
Zoe Rothblatt 09:44
Happy Thanksgiving!
Narrator 09:49
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 9- ACR Convergence: Key Takeaways from the World’s Premier Rheumatology Conference
The Health Advocates share several takeaways from attending the 2022 American College of Rheumatology Convergence (ACR), a meeting where rheumatology health professionals from around the world gather to share best clinical practices and cutting edge-research.
A highlight of the conference was the patient perspective posters, and our hosts got to speak with a few of the patient presenters about their experiences. Stephanie Aleite, a Mental/Behavioral Health Fellow and patient advocate, created “Engaging with the Spoon Theory” to help her patient peers prioritize how they expend energy. “My hope is that by using this, patients feel empowered to make more meaningful decisions about engaging with their support system and really prioritize events that can give the biggest emotional payoff.”


ACR Convergence: Key Takeaways from the World’s Premier Rheumatology Conference
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Stephanie Aleite 00:08
“So my hope is that by using this, patients really feel less of the emotional strain that comes from living with arthritis and that they feel empowered to make more meaningful decisions about engaging with their support system and really prioritize events that can give the biggest emotional payoff.”
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:57
We sure do, Steven. And as a reminder to our listeners, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shoutout to Talking Head Pain hosted by Joe Coe. Season 3 has dropped and Joe is just talking to migraine and headache advocates about their journeys. It’s really great.
Steven Newmark 01:15
Excellent.
Zoe Rothblatt 01:16
So let’s start with a listener comment. Ready?
Steven Newmark 01:19
Yes, yes.
Zoe Rothblatt 01:20
This one came in from Grace K. who wrote: “Great podcast, really informative!”
Steven Newmark 01:24
Thanks, Grace. That’s what we aim to do.
Zoe Rothblatt 01:28
Alright, Steven, that brings us into today’s discussion where we’ll talk about the recent conference, we both attended: the American College of Rheumatology 2022 Convergence, or as people commonly call it: ACR.
Steven Newmark 01:40
Yes, I was there in person and you were there virtually?
Zoe Rothblatt 01:44
Yeah. Once again, I’m so grateful for the virtual option, the hybrid option, for those of us who aren’t ready to go in person or you know, the travel’s a little more expensive. For you it’s a train, for me it’s a flight. I’m just grateful to have that virtual option.
Steven Newmark 01:59
Absolutely. And for me, being there in person, I was grateful that it wasn’t as crowded as it might have been, because it was offered virtually.
Zoe Rothblatt 02:06
Oh, yeah, that’s a good point. So let’s dive in. What is ACR and why does it matter?
Steven Newmark 02:12
Sure. Well, every fall, rheumatology and health professionals from around the world gather to share best clinical practices and cutting edge research at the American College of Rheumatology Convergence. The goal of the meeting is to educate providers about the latest rheumatology science in order to provide better care for their patients.
Zoe Rothblatt 02:28
And you know, from what you’re saying, it’s geared towards providers, and obviously, we’re a patient organization. So I think, you know, the next question is like, what does it mean for patients? And from our perspective, you know, the meeting serves as a really important goal for educating patients about the latest rheumatology science so that you know, our listeners and our community can learn more about their conditions and be more engaged with their providers.
Steven Newmark 02:53
Absolutely. And I saw a lot of patients while I was there, and I know that you Zoe were connecting to a lot of patients online to get important information.
Zoe Rothblatt 03:01
Oh, yes. Spoiler alert. We’ll hear from a few patients in this episode.
Steven Newmark 03:05
Great.
Zoe Rothblatt 03:05
So you know, what are some key takeaways that you learned from the conference? There was a lot of information going around. You know, what either surprised you or was a common theme that you were hearing about?
Steven Newmark 03:16
Well, I think some of what we learned is that there was a lot of discussion about a shortage of rheumatologists.
Zoe Rothblatt 03:23
Yeah, that was a big one.
Steven Newmark 03:24
Yeah, shortage of doctors specializing in rheumatology.
Zoe Rothblatt 03:28
Steven, I saw that they said that in Barbados, there was only one rheumatologist, that was really shocking to me.
Steven Newmark 03:35
Wow, it seems as though less and less MDs are selected as their specialty while at the same time some of the older doctors are retiring. So there’s not that infill that generally takes place in the profession, unfortunately.
Zoe Rothblatt 03:48
Yeah. Okay. What else did you learn?
Steven Newmark 03:50
There was a lot of talk about the need to humanize health care to make medication more accessible and the idea of working together to find better solutions. And working together that means doctors working with other doctors, patients talking to other patients, and of course patients and doctors talking together along with public health professionals.
Zoe Rothblatt 04:07
Yeah, I saw a lot of talk about the… you know, collaboration between the doctor and patient and it’s cool that you felt that in person and I felt that virtually the messages were getting through to us. I also saw some stuff about telemedicine and by some stuff, I mean, a bunch of stuff. You know, one of the speakers mentioned: “Telemedicine is here to stay! Go virtual or go home.” So that was really exciting to hear.
Steven Newmark 04:31
Yeah, for sure. Look, we all know, we’ve spoken about the benefits of telemedicine and to hear it said in blunt terms that this is here and it’s not going away, from the doctors, is good news I think because I think we all appreciate if nothing else, the option of telemedicine.
Zoe Rothblatt 04:46
Yeah, I definitely do. I love telemedicine. Especially for kind of routine check-ins to go over lab work or something like that. It’s really helpful. And you know, lastly, I would say my last big takeaway was that we’re still very much fighting COVID and it was comforting to hear that talked about in a large conference. Because you know, Steven, we always talk about how the public is kind of ignoring COVID. And it sometimes feels like just our community is shouting out. I know this was sort of a community event where it’s like a gathering of rheumatologists. But it was helpful for me to see that there’s still research being done and discussions being had. And critical discussions like: we don’t know the future but what do we know right now?
Steven Newmark 05:25
Absolutely, there was a lot of discussion about that. And, again, it’s… I think a lot of that is the patient’s voice that’s amplifying that. So it was good that we were there. And it was good that you were there as well, most importantly, to get the information into the hands of patients around the country and around the globe.
Zoe Rothblatt 05:40
Well, speaking of patients, you know, patients are invited to submit a poster about an intervention that helped them improve their health. And you know, these patient perspectives are a really important part of a conference that’s geared towards doctors.
Steven Newmark 05:54
Absolutely.
Zoe Rothblatt 05:55
Many of the speakers are just health professionals. It’s really important to have the patient perspective in there, I think, because, you know, there’s really no one-size-fits-all approach when it comes to medicine, and getting that patient voice and patient perspective helps doctors personalize their care.
Steven Newmark 06:11
Yeah, no, absolutely. You know, it’s really important, again, for doctors to see patients at a conference like this. It’s a very different way of seeing patients than doctors normally get. You know, you’re limited to your six minutes, if you’re lucky one on one with individual patients. But here’s an opportunity to see patients coming together. And speaking in a louder voice. Doctors are able to really take a breath, they’re not in a medical setting per se, and trying to provide medical care.
Zoe Rothblatt 06:35
There is a more equal power balance in a conference versus the doctor’s office.
Steven Newmark 06:41
That’s a good way of putting it, yeah. A more equal power balance. The doctor is not trying to rush you out, because they have another patient to see there. They’re settled in for the weekend. And if they could take a little bit more time to look over some of these patient posters to talk with some of these patients and to see what they’re talking about. It’s really important.
Zoe Rothblatt 06:58
For sure, and actually, I was one of those patients. I submitted a poster with Cheryl Crow who is an occupational therapist and she lives with rheumatoid arthritis. You may know her as Arthritis Life’s Cheryl, she’s so awesome. And we wrote about how social media can be used for good and help us on our healthcare journeys. But you know, GHLF also worked with 8 patients on posters, I guess 8 including me, so seven others, and I sat down and spoke to a few of them about their poster and what it was like So Steven, shall we have a listen?
Steven Newmark 07:29
Definitely.
Zoe Rothblatt 07:29
Okay, let’s start with Stephanie Aleite. Hi, Stephanie. Welcome to The Health Advocates. We’re so excited to have you here today to talk about your poster at the ACR Convergence. Why don’t you start off by introducing yourself to our listeners?
Stephanie Aleite 07:44
Hi Zoe, thanks so much for having me. Yes. So I live with rheumatoid arthritis. I was diagnosed 26 years ago and for the last 10 years, I’ve been a patient advocate. I am also a behavioral health fellow and a clinical social worker.
Zoe Rothblatt 08:02
Great, so what brings us here today is to talk about your poster. Why don’t you dive in and tell us about what you uncovered in your poster.
Stephanie Aleite 08:09
So the abstract that I submitted is called engaging with the Spoon Theory. And it features the intervention that I created, which is called: “Spoon Theory Economics”. It’s a cost-benefit analysis that I created to kind of help patients increase the connection they have with their support system. As an RA patient, I really know firsthand just how isolating living with arthritis can be. And as a social worker, I know that isolation can have a really significant impact on, not just mental wellbeing, but physical wellbeing too. And social support is actually something that has been really, really well documented in clinical research. Especially its relationship with positive health outcomes. So we know The Spoon Theory framework, right. And individuals with chronic health conditions have a reduced number of spoons or units of energy that they have to use every day strategically to complete daily tasks. So my proposed intervention, I won’t go into really definite details, but I’ll give a little overview. Spoon Theory Economics engages The Spoon Theory framework by asking patients to do a very simple mathematical calculation when they’re making decisions about social events. Don’t worry, this isn’t calculus. It’s just a subtraction.
Zoe Rothblatt 09:35
Okay, let’s hear it.
Stephanie Aleite 09:36
Okay. So if you can count to 20, and you know how to use the minus sign, you’re good. All we’re doing is calculating the difference between the importance of an event and the amount of energy or spoons required to do it. Both are rated on a scale of zero to 20. So essentially, the total value, the higher it is, it means the greater emotional gain. I’ll give you an example. If you are rating the importance of an event as 15 out of 20 points, but it costs you 10 spoons to do that, then you’re only getting a five out of 20 total value. So you know, you have some decisions to make. The variables I like to consider when determining the importance of an event are the guestlist, the rarity of the event, the fun factor, and the value to my career.
Zoe Rothblatt 10:29
And what sparked you to come up with this, and you know, submit a poster to ACR?
Stephanie Aleite 10:35
Oh, yeah, well, honestly, it’s a huge honor. It’s something I’ve wanted to do for a very long time. So I was so grateful to get the opportunity to do so. But I came up with a theory because honestly, I was so tired of just the emotional and physical burnout of FOMO, like the fear of missing out, you know. I was so tired of pushing myself so hard to attend things, and then paying for it later, because I was scared that if I stopped attending social events, that people would just stop inviting me. So to be honest with you, I did get to a point where I just gave up participating because the resentment and the burnout was just so real to me. And that’s why I created this intervention. I wanted to figure out an easy way to either help me make decisions about events, meaning which events I’m going to say yes or no to, or at a minimum just helped me be more aware of the cost so I can prepare and plan ahead. Like, for example, if I want to go somewhere, and I know it’s going to cost me a lot of spoons, I might ask a friend to drive me or help me in some other way. So my hope is that by using this, patients really feel less of the emotional strain that comes from living with arthritis, and that they feel empowered to make more meaningful decisions about engaging with their support system, and that they do so in ways that bring about like maximum fulfillment and joy, and really prioritize events that can give the biggest emotional payoff, hopefully free of the consequences that come from overspending spoons.
Zoe Rothblatt 12:21
I love that so much. You know, you mentioned you’ve been an advocate for 10 years. And I love the use that you’re putting your advocacy to in creating this tool that other patients can use to help them advocate for themselves, just like you have for yourself. So thank you for all that you do, Stephanie.
Stephanie Aleite 12:36
No, thank you so much. Honestly, this method has really just helped me in more ways than ever before. And I really hope the same is true for others.
Zoe Rothblatt 12:45
Thanks, Stephanie. Ashley had a few things to say about her poster as well. Why don’t you start off by introducing yourself to our listeners.
Ashley Krivohlavek 12:54
So my name is Ashley Krivohlavek. I am in the Tulsa Oklahoma area, and I have been living with psoriatic arthritis for about, I think we’re coming up on my ninth year now. So quite a while. The title of my poster is: “Please Hear Me: How Effective Provider-Patient Communication Improved My Psoriatic Arthritis”. And my objective with this poster was to absolutely give patients the ability to communicate more effectively with their provider. A lot of times I think that patients are like, well, they should just understand that I’m… when I say I’m fatigued… and just go from there. And a lot of times providers think: “Oh, well, they should know that I need to know how many days out of the week, I need to know that you’re fatigued and how it’s, you know, affecting your daily routines” and stuff like that. So what I really wanted to do was kind of bridge that communication gap and prepare patients going into those office visits with the best, most effective information that they can so that they can talk about different treatment options, or you know, what other lifestyle modifications that may be. So that was sort of the goal with us. And I have employed that advice myself many times, but particularly while changing rheumatology provider during the pandemic. But we came out on the other side and it’s actually for the first time in 8… 9 years it’s being well managed. So very grateful for that.
Zoe Rothblatt 14:41
Yeah, well, congratulations! That is such a big accomplishment to, you know, feel your disease is well managed and in control, and it’s really inspiring that you got to that point because of your self-advocacy, and now you’re sharing it with other patients.
Ashley Krivohlavek 14:55
Yeah, thank you. Every day I kind of just pinch myself and I’m like: “Oh my gosh. I can’t believe that I moved at this point with my chronic illness.” When I first started… I always tell the story… But when I first started my sort of journey into this, I would go by the infusion room. And I would always go past the infusion room and think: “Please, I don’t want my disease to progress to that level where I have to have infusions or other medical interventions.” And like about a year into the diagnosis, I was begging to be in infusion room because I was like, I need it. So it was such a short turnaround. But I am really grateful to be where I’m at today!
Zoe Rothblatt 15:41
And speaking of where you’re at today, what inspired you to submit this as a patient poster at ACR this year?
Ashley Krivohlavek 15:48
So for a variety of reasons. One is that I have been wanting to do more of written and information like just writing and getting things out to people that way. And secondly, the ACR is so amazing, because it puts our writers and people that are working in the rheumatology community in the same building as patients. And so what a unique opportunity that you get to have to talk to providers in sort of an informal setting, you’re not really talking necessarily about yourself, but you’re talking in broad about how to improve, you know, the disease for everybody. And it’s such a collaborative sort of feeling that I’m so excited to be able to do that and be able to communicate and see other patients that are doing the same thing as me and advocating because not everybody likes to advocate or discuss their own journey. And that’s totally fine. But I don’t mind at all. So this was perfect for me.
Zoe Rothblatt 16:57
That’s awesome. Well, thank you for, you know, coming on to The Health Advocates and sharing your advocacy with us and our listeners. We appreciate all that you do Ashley and finally now let’s hear from Eileen. Hi Eileen. Welcome to The Health Advocates. We’re so excited to have you here today to talk about your ACR poster.
Eileen Davidson 17:16
Hi, my name is Eileen Davidson. I’m from Vancouver, BC, Canada and I live with rheumatoid arthritis. I’m also a writer for CreakyJoints, as well as a patient partner with Arthritis Research Canada and several other organizations.
Zoe Rothblatt 17:29
And you will also participate in the Let’s Get Personal podcast, I’ll just give a little shoutout there, where you share your RA journey. So today we’re here to talk about the recent American College of Rheumatology conference where you presented a poster. Tell us about that poster and what you did in there.
Eileen Davidson 17:45
Well, I’ve been partnering with Arthritis Research Canada since 2018. And I’ve learned a lot from doing so particularly the studies that have involved exercise, and it was Arthritis Research that really kind of gave me a deeper understanding of how to live with this disease and pace with it. So when I attended the American College of Rheumatology Conference in Atlanta, in 2019, I saw the patient perspective posters. I instantly knew I wanted to do one. However, I waited a couple of years because I really wanted to do it in person, not virtual. So I knew this year, I was going to be presenting with Dr. Linda Li from Arthritis Research Canada on about a 24 hour day with rheumatoid arthritis. But I also wanted to do a poster and I narrowed it down to two studies that really kind of transformed my life. And I was also to really help out with the research. So they were the studies based off of physical activity, tracking my symptoms and my steps every day, as well as working with a kinesiologist on breaking down the barriers that I face as somebody living with rheumatoid arthritis… And I was able to take my experiences, which helps me write better, exercise better, live better and manage with my condition, but also create useful content for people living with the same condition or similar conditions as me and I kind of just wanted to put it all into one poster.
Zoe Rothblatt 19:08
That’s awesome. And I know you touched on this a little, that you went ACR and saw the posters and want to submit one but you know, what was it about seeing them there that made you say, I want to be part of this conference specifically?
Eileen Davidson 19:21
Well, I wanted to also promote patient engagement and research to other researchers and clinicians. And I think it’s really important for actually clinicians to understand that patients can get involved like this because often medical appointments are infrequent, there’s long waitlists, you won’t necessarily find the answers that you need to, but this is an avenue where you can get information and resources for living with your condition outside of the doctor’s office.
Zoe Rothblatt 19:45
Eileen, that’s so great. And I think it’s really amazing that you’re bringing the patient perspective to these conferences and continue to advocate especially for something like exercise, which I know can be really challenging when you live with arthritis. So thank you for all you do. And thank you for sharing with us today.
Eileen Davidson 20:02
You’re welcome. Thank you so much for the opportunity to do this and the support in being able to learn how to write an abstract, because without CrwakyJoints’ help, I really don’t know if I would have even been accepted.
Zoe Rothblatt 20:13
Well, you did all the hard work. So thank you, Eileen.
Steven Newmark 20:16
Yeah. Wow, that was fantastic. Zoe, it’s so great hearing from the patients one on one, you talking to the patients. You know, having been at the Convergence, it was great seeing the patients, but it felt different than the more intimate conversations you had with Stephanie, Ashley and Eileen. So that was fantastic.
Zoe Rothblatt 20:31
Yeah, agreed. It was really a wonderful opportunity to be able to sit and chat with them. So Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 20:41
Well, I hope that everyone learned the importance of inserting the patient voice into the medical community. You know it’s not just in the offices when you get that few minutes with your doctor one on one, but also the louder voice when we’re able to amplify it at larger gatherings of doctors.
Zoe Rothblatt 20:55
Well, thank you. And, you know, I learned that it’s really helpful to debrief after these conferences and hear from each other about key takeaways and just the difference between in person-virtual, it’s good to have these conversations together.
Steven Newmark 21:10
Well, we hope that you learn something too. We’d love to hear from you about your advocacy stories, Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 21:21
And who knows, whatever you share, maybe included in our listener feedback portion of future episodes.
Steven Newmark 21:26
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 21:31
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen, and it will help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 21:48
I’m Steven Newmark. We’ll see you next time.
Narrator 21:54
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
EXTRA Part 1- Non-Radiographic Axial Spondyloarthritis: A Conversation with Dr. Jeff Stark and Patient Advocate Ricky White
The truth is there are more than 100 types of arthritis, but not all of them receive the public recognition they deserve, especially non-radiographic axial spondyloarthritis (non-rad AxSpA).
In the first of a two-part episode, The Health Advocates are joined by rheumatologist and Head of Immunology Medical at UCB, Dr. Jeff Stark, and patient advocate Ricky White who lives with non-rad AxSpA. Dr. Stark and Ricky discuss the challenges in diagnosis, the advancements in treatment, and the research and advocacy being done to improve the patient journey.
“There are barriers for patients around diagnosis and certainly we want for patients with non-radiographic AxSpA to have appropriate treatments,” says Dr. Stark about the challenges patients face, “but there is so much more that can positively impact the journey that patients with this condition undergo.”


EXTRA Part 1- Non-Radiographic Axial Spondyloarthritis: A Conversation with Dr. Jeff Stark and Patient Advocate Ricky White
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Jeff Stark 00:08
I think that there are barriers for patients around diagnosis and certainly we want for patients with non-radiographic AxSpA to have appropriate treatments. But there is so much more that can positively impact the journey that patients with this condition undergo. And one of those is the way that we capture and record this disease or even have the ability to do that in medical records.
Steven Newmark 00:33
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 00:42
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:47
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 00:53
Well Steven, today’s episode is a bit different than our usual stuff. We are conducting a two-part episode about non-radiographic axial spondyloarthritis. In these two episodes, we’ll cover what it is, the road to getting a diagnosis, the advancements in treatment, and most of all, how to advocate for yourself when living with a chronic illness like non-rad AxSpA.
Steven Newmark 01:14
In this episode, we will hear from a patient Ricky White on his journey with getting a diagnosis of non-rad AxSpA, how he became an advocate and where he is today.
Zoe Rothblatt 01:23
And we’re also joined by Dr. Jeff Stark to learn about non-radiographic axial spondyloarthritis, the work done to improve diagnosis, and the importance of research in this area. So, you know, let’s dive in. When people think about arthritis, they generally think rheumatoid arthritis. I know that when I bring up my spondyloarthritis, my friends and family often call it RA. Maybe that’s because it’s easier to say than non-radiographic axial spondyloarthritis?
Steven Newmark 01:51
Is that true, RA is easier to say?
Zoe Rothblatt 01:54
I think so.
Steven Newmark 01:55
I guess you’re right.
Zoe Rothblatt 01:56
Well, whatever the reason is, we got to change that!
Steven Newmark 02:00
We sure do, because the truth is that there are over 100 types of arthritis. And today we will be talking specifically about non-radiographic axial spondyloarthritis. Part of being a patient advocate and a health advocate is letting people know about this information so that number one; people who are undiagnosed may hear about it and recognize symptoms and be able to make an appointment and get a diagnosis, and number two; to provide a sense of community for those living with the condition as they hear from us and from others.
Zoe Rothblatt 02:26
That’s very true. That sense of community really, really helps with coping with a chronic illness. So what is non-radiographic axial spondyloarthritis? Let’s start there.
Steven Newmark 02:36
That’s a great question Zoe, and we’re joined here today by Dr. Jeff Stark, the Head of Immunology Medical at UCB. Jeff is also rheumatologist and spends a lot of time and focus on non-rad AxSpA. UCB has invested in years of research and understanding of this chronic disease. Dr. Stark, how do you describe non-radiographic axial spondyloarthritis to patients and what makes it a particularly challenging disease?
Dr. Jeff Stark 02:59
Thanks Steven. And I love your abbreviated form of non-rad AxSpA because it is something of a mouthful. You know, non-radiographic axial spondyloarthritis, or sometimes we call it Nr-axSpA, is a form of arthritis and it belongs to a larger family of diseases that we call axial spondyloarthritis. And these are inflammatory conditions that can affect the spine and the sacroiliac joints. And what that means is that for the majority of patients with this condition, they really experience low back pain as a primary symptom of their disease. However, symptoms aren’t limited to that area, we actually see that pain and stiffness can occur in many other parts of the body as well. The diagnosis of non-radiographic AxSpA can actually be a challenge, but is sometimes helped by finding imaging changes on certain tests like MRI scans. But these patients by definition, have no X-ray changes and that can often lead to a misdiagnosis or their condition improperly being assessed as a mild form of disease even though the symptoms may be severe. So because of these challenges, non-radiographic AxSpA patients even today can experience many years of delay in their diagnosis. The data actually tell us that this delay can be up to eight to 10 years for some patients and unfortunately, during that time, they may receive inappropriate treatments or be treated in inappropriate care settings before they finally land in the office of a rheumatologist where they can receive a proper diagnosis and proper care. This misconception as well that non-radiographic AxSpA is a milder form of disease, and unfortunately, for many patients, that’s just not the case. We see these folks have a substantial burden of disease in fact and these symptoms that they experience of pain and stiffness can really affect their quality of life through changes such as chronic pain and a reduction in their ability to function every day.
Steven Newmark 04:53
Thanks for sharing and providing those insights. Our listeners know how much we talk about time to diagnosis and how important it is to get that diagnosis as timely a manner as possible in order to improve the quality of life. And there’s clearly a lot of room for improvement in the journey to diagnosis with non-rad AxSpA. Can you share a little more on how UCB is working to change this?
Dr. Jeff Stark 05:13
Absolutely. And thanks for asking that question, Steven. You know, I think that there are barriers for patients around diagnosis. And certainly we want for patients with non-radiographic AxSpA to have appropriate treatments. But there is so much more that can positively impact the journey that patients with this condition undergo. And one of those is the way that we capture and record this disease or even have the ability to do that in medical records. So for several years, UCB worked in partnership with professional rheumatology organizations as well as patient advocacy groups in soliciting a group called the ICD-10 Coordination and Maintenance Committee (C&M) and this is a group that oversees the diagnostic codes that are available to physicians and health care providers in the United States. We requested along with those community partners the creation of a new ICD-10 code specific for non-radiographic AxSpA. So prior to that time, there was actually no way to record such a diagnosis in electronic medical records. We’re really happy that as a result of those concerted and collaborative efforts that in October of last year, the committee endorsed the creation of a new subcategory for non-radiographic AxSpA, meaning that now today, physicians and health care providers in the US can actually record a specific diagnosis of non-radiographic AxSpA. And that’s important for many reasons, but perhaps most importantly, because it recognizes and validates non-radiographic AxSpA as a real legitimate and separate condition from other diseases in this larger category. So this has been an exciting update we think for the community, but especially for people who are living with this condition that traditionally has been under-recognized and undertreated. We also think that proper coding will help to improve diagnostics. We think that it will help to reduce the delay to diagnosis. And actually really importantly, now that we can track and identify patients with this condition in a very specific way, it’s going to allow us to study these patients and generate real world data about the journey that they undergo the kinds of treatments, that they receive the burden of their disease, etc. And I know I think in a future episode that you’ll be hearing from one of my colleagues, Amanda Ledford in greater detail on this topic. So excited for that to happen at a point in the near future. The other, you know, sort of activity that UCB has been involved in is creating resources to really support the health care community and lead to an earlier recognition and timely referral and diagnosis for these patients who may have undiagnosed axial spondyloarthritis. Last year, UCB introduced something called the axSpA-ID Query Set, which is actually a tool or a platform that’s designed to be used with electronic health care records. And what this set does is it puts a customizable clinical criteria set in the hands of health care providers that helps them. It’s sort of seamlessly embedded in their electronic record and helps them to identify patients who have a higher likelihood of AxSpA so that they can be referred on to an appropriate care setting for a formal evaluation that we hope leads to an accurate diagnosis and appropriate treatment to follow.
Steven Newmark 08:27
That’s really interesting. In terms of treatment, I’d love to hear more about the importance of clinical research in this area.
Dr. Jeff Stark 08:33
Absolutely. So there have been some significant advances, really in the understanding of what drives the inflammation of AxSpA over the last two decades. But a deeper understanding of these topics, really kind of the immune system dysregulation that’s going on may ultimately hold the key to raising the standard of care and optimizing outcomes for patients essentially, the more we understand what’s going wrong with the immune system, what’s causing this abnormal inflammation to be present, the more opportunity we have to target those abnormalities and improve the symptoms that patients with non-radiographic AxSpA experience. UCB continues to study non-radiographic AxSpA as a distinct condition with separate and dedicated clinical trials, which we really feel helps to distinguish it as a unique condition and give it the attention that it deserves as a separate disease state. Actually coming up in the very near future, just next week, we’ll be at the ACR Convergence 2022 Meetings, sharing data across our portfolio, but including data specifically for non-radiographic axial spondyloarthritis, and also hosting a medical symposium. They’re on both axial spondyloarthritis and a related condition called psoriatic arthritis to help educate the community about advances in these areas. So you know, I think just to sum up, UCB is committed to innovative research and development to help improve the lives of patients who live with this tough condition called non-radiographic AxSpA. UCB has one approved treatment option for non-radiographic AxSpA that we produce today, but we’re actively investigating other future potential solutions and are excited about those possibilities down the road.
Steven Newmark 10:15
Well, thank you Dr. Stark, I think we’re all excited to see what’s next for non-rad AxSpA patient care. As you noted, many people have a long road to getting a diagnosis. And hopefully with the work that you guys are doing and others, we can cut that time down.
Zoe Rothblatt 10:28
Well, that was really wonderful to hear Dr. Stark. And as we continue the conversation, let’s hear from someone who has personal experience. We have with us here today, Ricky White an individual living with non-rad AxSpA.
Steven Newmark 10:41
And he has graciously agreed to come on the podcast to share his story.
Dr. Jeff Stark 10:44
Ricky, it’s really, really great to meet you through the magic of the internet today, and really appreciative that you’re willing to join this conversation and share your story. I think one of the things we heard in the first part of this podcast is the really long journey that many patients with your condition undergo and wonder if you could share with us a little bit about what that journey looks like for you.
Ricky White 11:04
Yeah, thanks. Great to meet you, too. So my journey started… I was officially diagnosed in 2010. And I probably should say this upfront is officially my diagnosis was ankylosing spondylitis not non-rad AxSpA but because that term didn’t exist when I got diagnosed back in 2010. So if I was to be re diagnosed today, I would fall under the category of non-rad AxSpA. So just put that out there in case anyone reads anything about me on the internet it will refer to ankylosing spondylitis. But that’s officially my diagnosis. And so part of the reason it stays my diagnosis, though, is to touch on points you mentioned earlier. There’s not always the treatment options available to patients with non-rad AxSpA because this is relatively new to a lot of rheumatologist and the problem you mentioned with the coding issue is with the higher classification, you know, and we both know that that’s not true, that one’s not necessarily worse than the other. But there are more treatment options available to me so downgrading my diagnosis to non-rad AxSpA actually do me more harm than good. So I think that’s one thing to point out. And you very, you explain that very well earlier. So hopefully that makes sense to everybody why that’s the case. So I was diagnosed officially in 2010, I actually started suffering with symptoms just three and a half years prior. So that’s very short for most patients. And I got very lucky. So I was a registered nurse at the time practicing in England, I used to work on the ICU, and I was getting sciatic pain and lower back pain. So I went to see my doctors over and over again, short courses of anti inflammatory drugs: “Oh, you’re a nurse with back pain. That’s pretty common. It’s almost part of the job description,” right? So it was kind of just passed off as well. You know, make sure you do your proper moving and handling techniques correctly, and you’re doing all the things you should be doing as a nurse to prevent further injury. But it kept persisting. And I noticed that this was happening almost cyclically, like every three or four months. So back in England, we have this team of doctors called occupational health doctors. And so they’re basically doctors and nurses, for doctors and nurses right there on site in the hospital. If you have a work related problem, you go see them and they can check you out. So I went to see one of those and he says: “Oh, you actually you don’t have lower back pain, you have inflammation in your SI joint.” And so then pain relief was pretty much the same. But it was a different cause a couple of years after that I was getting worse and worse to the point where I was really struggling to work. I went to see my GP and at the time, she was less receptive to the idea that it might be something other than lower back pain. But the luck I had was one of the doctors I was working with mentioned to me after I was talking to him in the coffee break room: “Have you been tested for ankylosing spondylitis?” And I said: “No, what’s that?” Right? So I had no idea what it was, even as a nurse. I ended up getting tested for HLA-B27 and it was positive and they referred me to rheumatology. And that’s kind of how it progressed.
Dr. Jeff Stark 13:48
Yeah, that’s so interesting. And I smile a bit to myself when I hear you say three and a half years is a short journey to diagnosis. It is truly compared to the average but still a very long time for somebody to, you know, be wondering about what’s going on and whether they’re getting the right treatment, we sort of hope I think for many patients that they land in a rheumatologist office, because that’s the specialty who really has expertise in these disease states. I wonder, you know, what that looked like for you and when you knew you’d found the right doctor if you have indeed, you know, found the right one today and what do you look for in a rheumatologist? Who, you know, you feel like provides you the right kind of care, the right approach to treating this condition?
Ricky White 14:27
So I think I definitely didn’t have the right rheumatologist when I started my journey. I definitely have the right rheumatologist now. Part of that is because I moved 3,000 miles to a different country in a different health care system. So my very first rheumatologist basically said to me: “Let’s do an MRI scan. If you’ve got ankylosing spondylitis, your joints will fuse together and then you won’t have pain anymore.” And I was just gobsmacked when he said that, my jaw dropped to the floor, right. I was used to being around bad news working in an ICU, I was used to, you know, giving it and I’ve been in those stressful situations, but I wasn’t used to receiving it, right. And that was probably one of the worst things you probably could say to a patient, right? It wasn’t helpful. There was no plan of action, there was nothing. And the next rheumatologist I saw, he said: “You’ve got severe AS let’s start treatment now, we’re gonna give you a steroid shot,” bang, bang, bang, all the treatment, just everything went from snail’s pace to 100 miles an hour in the space of one meeting with him. And so that really is when things changed. And after I moved to the US, I wasn’t insured for the first year when I was here, I was an immigrant, right, so I wasn’t eligible for Medicaid or anything I had to pay out of pocket. Then we got insurance from my wife’s work, and then everything kind of picked up from there. And I’ve seen a few rheumatologists with my current health care provider who have all been great. As for kind of what to look for, I think there’s this misconception that people have that much choice that they can choose the right doctor, that’s not the case for most of the world, right? You don’t have the privilege of going: “Well, this doctor is not right for me, let me go see the other one two miles down the road.” That is not realistic for most people in the world, even in the U.S. So I think there’s that misconception that you can find the right doctor, right. I always look at it as it’s a relationship, because you’re going to be shown very intimate parts of your health. And so you’ve got to be comfortable with that person. Obviously, that is the most important, if you’re not comfortable sharing with that person, then maybe they aren’t the right doctor, you need to try and look elsewhere. But just because they may not feel like the most qualified or the right doctor at the time doesn’t mean they’re not still going to give you the right care. I think most of the problems patients have come down to miscommunication and styles in communication. The doctor doesn’t quite know what the patient’s telling them, or misinterprets that and the patient doesn’t really want to know how the doctor wants to receive information. So I think if you can figure out how you can communicate well together, like any relationship, then I think that really is going to set you off on the path to kind of getting the right treatment, being upfront about what your goals are, because what your goals are and what your doctor’s goals for you are, may not be aligned. And so you really have to communicate that and be upfront about what your goals are as a person. Because once your goals align, then the treatments will get you there.
Zoe Rothblatt 17:02
Ricky, you touched on, you know what you’ve heard from other patients. I’m wondering if you’ve found a community of other people living with AS and non-rad AxSpA, what that means to you?
Ricky White 17:13
Yeah, I mean, community is key, right, to dealing with this because this isn’t just a physical condition, right? You’re in pain constantly. Because a mental health aspect that plays into this, right? One point myself, I was clinically depressed, I didn’t leave my studio apartment for three months, because I physically can’t walk to the bathroom, barely. So you know, community is really what got me over that period of depression and actually got me on the road to good treatment and really learning about the condition and about how it affects me and really helped me be introspective about why I’m doing the things I’m doing and what I need to do to overcome the things that my body is feeling. So I’ve been in several communities and the platform use changes. Now it’s you know… it could be Facebook groups or anyway. There is a lot out there if you’re willing to look for them. So my advice always to people who are newly diagnosed is go find a community. Go search. Where do you like to be? Is it Facebook? Is it in forums? Is it in person? Do you want to do an in-person meeting? Where are you most comfortable, and then I guarantee there’s a community there for it. And so one of the many hats I wear in life is, I’m the president of a nonprofit called Walk AS One. We’re an all volunteer organization that serves people with AS and AxSpA all around the world. And the whole reason we exist is for community right? To give people a place to come and talk to each other.
Steven Newmark 18:24
It’s great that you’ve created this community or have joined in this community. How do you use this community to advocate for yourself and for others?
Ricky White 18:32
I think the days of me advocating for myself are gone. I find I get more benefit from advocating for others than myself. So you know, my disease is well controlled. Now I’ve got good treatment, I’ve now got the doctors around me. More importantly, I now have the knowledge that I have about the condition and how to treat my symptoms on a day-to-day basis because it’s ever changing. So I tend not to advocate for myself, I tend to advocate for others and that gives me more reward. So how I do that is I think information is key. But a lot of people get this diagnosis, but they’re not necessarily given the information they need. I know when I was diagnosed I wasn’t told about NASS, which is the National one at the time… it was the National Ankylosing Spondylitis Society in the UK, they’ve since changed the name to Axial Spondyloarthritis Society. But so I wasn’t given that information. But I went out and I found that community and then I got all the information I needed and the community and the support. So I try and be that person too. When I hear someone who’s newly diagnosed is the first thing I do is, here’s the support groups, you’re going to need them and explain why. And then I try and give them the information in a way they want to receive it. But also at a level they’re willing to receive it as well. Because, you know, as a nurse, I could talk on a similar level to Dr. Stark, but that will go over a lot of people’s heads. So you kind of have to talk at the right level for them and where they’re at in their journey.
Dr. Jeff Stark 19:48
That’s fantastic, Ricky. Really, really exciting to hear about how you’ve leveraged your own experience for the benefit of a larger community. And really great to hear that you’ve come so far in your own journey and that your own condition is well controlled. At this point, I wonder if you have any tips or tricks from your own experience of living with this disease of how you’re managing your axial spondyloarthritis, and how you’re maintaining that good condition that you find yourself in today.
Ricky White 20:14
I think the key for most people is to keep an open mind because your condition is gonna evolve over time, and so much the ways you approach and treat your condition. I found in the early days, I don’t do it now, but in the early days, I used to write things down how I was feeling on a particular day, what my pain was what I did, and did it work. I was very analytical, right, I looked at the data, that’s just how my brain works. I think writing things down is still good, even if you’re not putting numbers to things because it lets you be honest with yourself about how you’re doing. And then you can treat it appropriately. If you’re ignoring a symptom, or you’re pushing, you know, this depression down. Or if you’re ignoring something that’s clearly upsetting you, then you’re not going to treat it and it just blows up in your face later down the road. Right? So being honest with yourself, I think is the most important thing. And always have a plan B. That’s the other tip, always have a plan B, right? Maybe I’m going out for drinks tonight. And you know, I have a flare, I can’t go out for drinks anymore, I’ve got a plan B. Maybe I’ll FaceTime and say hi, or something you know. So always have a plan B and educating other people so they can help you is also important, right? Because there are days when I maybe I’m walking a certain way or act in a certain way, and my wife will turn around to me and tell me: “Hey, I see what you’re doing. You need to go do this,” right, because I’m ignoring it. And then she tells me now, this is what we do. And this has happened. Building that support network around you is definitely a big improvement to help as far as how I manage my own condition. While right now I’m on anti-TNF injections, that helps a lot. And the thing that by far is helping me most is exercise. So I’m a martial artist, and doing that amount of stretching. And the conditioning that I do with the martial arts has helped me immensely because it’s not just about exercise. And it was about building functional strength. So on my bad days, I’m still strong enough to stand up straight and all this kind of stuff. So I mean, a lot of doctors will tell you not to do impact sports, when you have this kind of diagnosis. And I say do what makes you happy. If it’s making you happy, you’ll figure out how to make it work.
Dr. Jeff Stark 22:09
Great. Thanks for sharing.
Zoe Rothblatt 22:10
Yeah, thank you both so much for joining us today. You know, there’s so many learnings to take away and I really appreciate having both sides of the conversation patient and doctor and all of us advocates to coming together. So thank you. Well, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 22:27
I learned about you know, the importance of talking to doctors and professionals and scientists who are out there working to try and improve the lives of patients. You know, we spend so much of our time talking with patients and advocating on behalf of patients. It was great to hear from a doctor like Dr. Stark who’s out there and actually trying to work to improve timely diagnosis and improve outcomes for patients. So that was great.
Zoe Rothblatt 22:51
And I learned from Ricky just how much goes into caring for yourself and the different aspects of what you can do to care for yourself and advocate for others as well.
Steven Newmark 23:02
We hope that you learned something too. This episode is made possible with support from UCB sponsor the Global Healthy Living Foundation.
Zoe Rothblatt 23:10
And we hope you’ll join us for part two. In part two of this series we’ll have Amanda Ledford describing some of the access and policy challenges in diagnosing non-rad AxSpA.
Steven Newmark 23:19
Thanks as always for listening and a special thank you to Dr. Jeffrey Stark and Ricky White for joining us today.
Zoe Rothblatt 23:25
Yes, thank you so much. I’m Zoe Rothblatt.
Steven Newmark 23:27
I’m Steven Newmark. We’ll see you next time.
Narrator 23:33
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 8- The 2022 Midterm Elections: A Hot Take on What’s at Stake
The 2022 midterm elections are underway, and The Health Advocates are discussing key results for Senate, House and state races. The hosts dive into the biggest surprises of the election so far, what it means for our community who lives with chronic illness, and how the election will chart the course for future health care access, affordability, and public health.
“In terms of just the pure politics of it… there was an expectation late in the race, that there would be some kind of a red wave or a strong Republican showing that failed to materialize… it looks as though the Republicans are poised to take back the House, but not by a particularly robust margin and the Senate is still too close to call,” says Steven Newmark, Director of Policy at GHLF.


The 2022 Midterm Elections: A Hot Take on What’s at Stake
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
In terms of just the pure politics of it, there was an expectation late in the race that there would be some kind of a red wave or a strong Republican showing. That failed to materialize. As of this morning, it looks as though the Republicans are poised to take back the House but not by a particularly robust margin and the Senate is still too close to call. 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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts we have so many to choose from.
Zoe Rothblatt 00:56
We sure do. And as a reminder, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shout out to Let’s Get Personal, a new podcast hosted by our colleague Dr. Daniel Hernandez. Dr. Hernandez speaks with rheumatoid arthritis patient advocates about their treatment journey, you know, both the emotional and physical aspects and also sits down with rheumatologist Dr. Grace Wright to hear from her about working with patients.
Steven Newmark 01:23
Yeah, it’s great to hear about that connection between the emotional and physical aspects of our health.
Zoe Rothblatt 01:28
It’s so important. So let’s start with the listener comment. Ready Steven?
Steven Newmark 01:32
I am ready.
Zoe Rothblatt 01:33
This one came from Jamie S. who wrote: “Great podcast. Thanks for keeping me informed.”
Steven Newmark 01:38
Yeah, well, there’s a lot to be informed about. So we’ll keep doing what we keep doing. Thank you, Jamie.
Zoe Rothblatt 01:44
Speaking of being informed, our biggest news of this week is the election. Steven, I know you have a political background. You’ve been around and seen many election nights. And I’m hoping you could share your expertise with us today. What are we seeing so far?
Steven Newmark 01:59
Sure. So let me first start by saying we’re recording this on Wednesday morning, right after Election Day. So bear that in mind, as we go through the results. We’ll talk about how this is going to affect health policy going forward. But in terms of just the pure politics of it, you know, there’s a few things, there was an expectation late in the race, that there would be some kind of a red wave or a strong Republican showing. That failed to materialize, it seems more like a red ripple, not necessarily a wave. As of this morning, it looks as though the Republicans are poised to take back the House, but not by a particularly robust margin and the Senate is still too close to call. So let me just pause there and speak specifically about the Senate. As of now it looks like it is a 48 to 48 tie with four races yet to be called. One is Alaska, which has essentially two Republicans running against each other. So that is going to go into Republic hands that would make it a 49-48. And then the three other races that as of this morning that are too close to call are Georgia, Nevada, and Arizona. So Nevada looks like it’s tipping towards the Republicans, Arizona seems to be tipping in the direction of the Democrats, which means that the balance of power could hang in Georgia. Now Georgia, you have the Republican candidate Herschel Walker facing the incumbent candidate, Raphael Warnock and both are essentially tied at 49%. However, under Georgia rules, you need to secure 50% of the vote to win the election. If neither candidate secures 50%, which seems to be the likeliest scenario that will go to a runoff in early December. And just like it was in 2021, in January of 2021, that race could determine who controls the Senate, because if the Democrats get 50 seats with a tie breaking vote of the vice president that would give control to the Democrats just as it had for the past few years. So that’s where we are in the Senate as of this morning. It’s hard to get exact numbers on the house. But it seems pretty clear that the Republicans are going to have control of the House. The question is: how large that control is going to be?
Zoe Rothblatt 04:00
So yeah, talk to us about that. What does that mean? Like how large the control will be? What does that mean for policies being passed?
Steven Newmark 04:08
So that’s a great question. The larger the lead, the more likely we are to keep that lead, of course, in two years when the house is up for election again. But more importantly, in the interim, I’ll reverse it and say: the smaller that lead, the more you have to rely on each individual House Republican to advance your agenda. So anytime you want to do something, if you look at the last two years in the Senate, for example, the Democrats had 50 senators, and every time they needed to pass something, they needed to get all 50 senators on board or reach across the aisle, which was hard to do in our current state of politics. So if in the house, you have a very close margin, it gives a lot of power to each individual member of the House with a lot of these House members coming from the far extreme of the Republican Party, it’s going to give those folks a lot of power as we go into the next two years to not necessarily affect actual passage of legislation per se, but to advance what I would call the conversation.
Zoe Rothblatt 05:02
So Steven, I’m hearing a lot from you. And I’m wondering if this is overall what you expected to see from this election?
Steven Newmark 05:09
You know, that’s a good question. Of course, that’s top of mind. Is this what folks expected? Was there actually an expectation of a red wave? I would say, for me, this is generally what I expected. I think it was baked into the cake after 2020 that Republicans could take back the house. I think it’s only happened twice in the last 100 years that an incumbent president has actually gained seats in the House of Representatives, two years after first being elected. The last time that happened was in 2002. So it was essentially baked in. Plus, when you add in the redistricting that occurred after 2020, Republicans were poised to pick up between 10 and 11 seats, essentially, without doing anything else. So that was no surprise in the sense that they won. I’m a little surprised that Republicans didn’t do better and pick up more seats. Although again, there’s still a lot of races outstanding, but I’m definitely surprised that the strength of Democrats in Ohio where Democrats actually picked up some house seats. That was surprising. And Democrats had a strong candidate running for Senate who lost but perhaps his coattails, Tim Ryan was the Democratic candidate for Senate, but perhaps his coattails help pick up some of those down ballot House races. The Senate’s tough to call but it looks like as of now, all incumbents are going to be reelected with the possible exception in Georgia and Nevada. I think about a year ago, I would have been surprised that Nevada would have flipped from Democrats that Republican but it’s a toss up state to begin with. And I want to say I was surprised, but I thought it was interesting how much more Republican of Florida moved. Ron DeSantis was reelected by a strong margin, a healthy margin, and they were more Republican votes in 2022 in Florida than they were in 2020. So I think it’s fair to say Florida, which had been thought of as a purplish, reddish, purplish state for such a long time, I think it’s fair to plop Florida firmly into the red category moving forward.
Zoe Rothblatt 06:58
Steven, this is all really good stuff. Thank you for breaking this down. You know, if it’s not too much to ask, what else are we seeing?
Steven Newmark 07:05
Well, I also find fascinating and I will say this in a very positive light. Women have done very well at the gubernatorial level across the country.
Zoe Rothblatt 07:12
Let’s give a round of applause for that.
Steven Newmark 07:15
Republican women are projected winners in South Dakota, Alabama, Arkansas, and Iowa and Democratic women are projected winners in New York, Kansas, Massachusetts, Maine, Michigan and New Mexico. And that will make 10 Women who would be serving as governor simultaneously breaking the previous record of nine. And there’s still races in Oregon and Arizona that have yet to be projected, which could give us at least 12 female governors. Uou know, a few other just passing points, you asked me if I was surprised or what I thought. I think overall, I wasn’t surprised because the actual polls, dare I call them mainstream polls were actually on point in this election, or very close to being on point. There were some outlier polls that that look to skew the numbers towards more of a red wave. But eliminating those from the polling results. We essentially got the results that most pollsters were anticipating which I found interesting because polls have such a negative connotation nowadays. The other thing it’s definitely worth mentioning, is that Donald Trump, still the front runner for the Republican nomination in 2024, was definitely weakened last night. I’m going through the results as best as I can, district by district and state by state, but I haven’t come across one candidate that Trump backed, one of those Trump-backed candidates who actually overperformed to win an election last night. There were obviously Trump-backed candidates who won but they essentially garnered the votes that were expected. I mean, the biggest black eye for Trump is going to be a toss up between Pennsylvania and Georgia. In Georgia, I think it could be said that you could have put a rock in a suit and put an R next to their name and they likely would have won that Senate race. They had Brian Kemp at the top of that ticket who easily won governor in Georgia last night, you had Brad Raffensperger, Secretary of State ran a statewide campaign last night and won pretty easily and it seems as though any Republican could have been pulled up by those coattails. But Herschel Walker who was Donald Trump’s hand picked candidate is in a real fight. So we’ll see how that turns out, likely in the runoff. Also Trump’s shall we say nemesis, if you will in the primaries is potentially Ron DeSantis and Ron DeSantis won handily without any help from Donald Trump and he pointedly attended separate rallies from Trump two nights ago in Florida. He pointedly did not mention Trump in last night’s speech. So we’ll see where this goes.
Zoe Rothblatt 09:21
Yeah, we’ll see where this goes for sure. All right, Steven, I know you’re up late watching all this What’s been your biggest surprise so far?
Steven Newmark 09:28
Biggest surprise for me was definitely representative Lauren Boebert from Colorado. She was recently elected as a Republican very far right, somewhat popular, if you will, amongst a certain contingent of Republicans. Her race was expected to be somewhat of a cakewalk. In fact, to the closest polling there had her rival you know, within double digits. Yet she is in a fight right now. It looks like she’ll pull it out. But there were a lot of people who voted for her clearly in 2020, who did not want to see her return to Congress, which was surprising to me at least.
Zoe Rothblatt 09:57
What’s been your biggest non-surprise then?
Steven Newmark 09:59
I think when it comes back to the polls and how accurate they were ultimately. How expected a lot of this was. You could even go back two years, you know, Republicans going to take the house, they perhaps didn’t recruit enough candidates or the proper candidates, if you will to take back the Senate, win more governorships, so they didn’t get the red wave that they were hoping. So I think, you know, I think it should have been expected even if the media didn’t play that narrative at the end there. And also, actually, I don’t know if I’d call this a non surprise but the most positive aspect of last night for me is how many candidates have conceded. Candidates who had been what they call election deniers, things of that nature. I’m thinking of the Republican candidate for governor in Wisconsin, candidates in Pennsylvania, these folks have conceded they’re not threatening litigation, and they’re not claiming that the election results are false. And ultimately, that’s a very good thing for democracy. So that leaves me hopeful, generally speaking. That leaves me hopeful as well. All right, Steven, as we always do, let’s bring things back to our community who live with chronic illness. We talked today about a lot already so let’s transition a bit to talk about who’s going to be in charge of the house and you know what this all means for health policy going forward? Yeah, let’s talk about what this means for us and health policy. So the House is going to have a new speaker, likely, it’s probably going to be Kevin McCarthy. He’s not really a very strong ideologue but he’s someone that tends to tow the generic Republican line. But as we mentioned, in a closely divided house, he’s going to have to rely on each of his members. So we’ll see where some of his members tend to pull him. Probably the biggest issue when it comes to health and health care is the pandemic. Yes, very important for our community. Let’s dive into that. Definitely. So in looking at pandemic or epidemic resources, I would include monkeypox, COVID, I could also include general funding for vaccine uptakes, general public health outreach regarding the flu, RSV…
Zoe Rothblatt 11:49
Yeah, you know, there’s still an official ongoing announced public health emergency and national emergency declaration by the executive branch. And what this really means at the end of the day, is that allows for funding and for a response team, you know, to tackle the pandemic epidemic and have resources available. So you know, what’s going to happen now as leadership changes?
Steven Newmark 12:10
Right. So I think there’s a few things and Republicans are likely to push to dismantle a number of lingering pandemic policies. One of their top pile policies that they’re going for is the vaccine mandate amongst the US military, according to multiple news outlets. They’re also looking to essentially cut funding or certainly not authorized any new funding with regards to pandemic responses.
Zoe Rothblatt 12:31
And you know, what does that mean for our community? It means it’s not going to be a priority anymore. And we already know that many in our community are still isolating and taking COVID precautions. And there’s already been this general feeling in the public that COVID is over and our community is just really feeling left behind. And I think that if leadership comes in, and all these funding and responses go away, it’s just going to leave our community feeling more alone than ever.
Steven Newmark 12:57
Yeah, for sure. And I would say to be prepared for that to happen. Republicans, as I said, are not likely to advance any funding. So if that’s not going to get through the House of Representatives, new funding just won’t happen. In terms of existing funding, there are likely to be calls to cut funding. And while Democrats may control the Senate and certainly control the veto power with the presidency, there are certain must pass pieces of legislation such as Defense Reauthorization Act and other such things that Republicans could try to attach funding cuts to regarding the public health emergency.
Zoe Rothblatt 13:30
And what about around the states? What does the election mean for COVID responses around the states?
Steven Newmark 13:36
You know, again, it’s a state by state thing, but certainly in states that have tilted Republican, a lot of what they ran on was cutting funds with regards to this funding. There’s also even in Congress, you know, there’s a potential that some committees are going to look to clawback COVID aid leftover from states.
Zoe Rothblatt 13:54
Interesting. What does that mean?
Steven Newmark 13:55
Well there’s chatter, that they may look into states that haven’t spent all their funding and essentially ask for the money back.
Zoe Rothblatt 14:02
Yeah, that’s interesting. What about the non pandemic stuff? What healthcare agendas do we have on our mind?
Steven Newmark 14:08
I would say first and foremost, would be cuts to Medicare, and also to Social Security. There are… there’s a lot of chatter in Republican circles about cutting Medicare generally. But frankly, I cannot imagine they would actually go through with this. It’s terrible politics, and ultimately, it would never get signed into law anyway.
Zoe Rothblatt 14:24
Steven, what about drug pricing? I know we’ve been talking a lot about this recently, especially with the Inflation Reduction Act. What does, you know, a change in leadership mean for drug pricing?
Steven Newmark 14:33
Yeah, I would say again, because of the divided government, it’s going to be near impossible to get any new legislation when it comes to drug pricing. Reducing drug costs was a priority for the last two years. It got through in a tepid way as part of the Inflation Reduction Act. But now it actually has to be implemented. So you know, we’ll see how the implementation goes. But there may be a lot of pressure to slow walk the implementation.
Zoe Rothblatt 14:56
You know, something we advocate for is transparency among Pharmacy Benefit Managers, the so called middlemen that work between, you know, your insurance company and the drug plan and stuff. And, you know, I think I saw, correct me if I’m wrong, but that seems to be one of the few drug pricing issues that’s bipartisan agreement.
Steven Newmark 15:14
Yeah, for sure. In fact, and Representative Buddy Carter from Georgia was a Republican said that if Republicans win the house, he would ask leadership to make PBM reform the subject of one of the first 10 bills in Congress. So we’ll see if that happens. And that does have the possibility of actually passing.
Zoe Rothblatt 15:29
And you know, that would be a huge win for our community who, you know, often we take drugs to treat the complex conditions, and you know, they’re expensive. There’s a lot of behind the scenes work. So you know, it’d be good to see some action at the federal level. And, Steven, you know, I’d be remiss if I didn’t mention this, what about repeal of the Affordable Care Act?
Steven Newmark 15:49
Well, I think that ship has sailed. I don’t even think Republicans have the energy to even try to do anything with that. But one never knows. Stay tuned.
Zoe Rothblatt 15:56
Yeah. Well, with the Affordable Care Act on our mind, you know, it’s a good reminder that it is open enrollment season. So definitely, you know, check out your health insurance and get enrolled, because it’s just so important to have that coverage. Alright, Steven, that brings us to the close of our show. What did you learn today? And dare I say, what did you learn from yourself because you are clearly the expert on this episode?
Steven Newmark 16:20
You know, I guess I learned just in terms of where we are, it’s Wednesday morning again, early Wednesday morning, and what I learned from today is we’re not too far off from where we probably expected to be two years ago, 18 months ago, maybe even 10 months ago. So in the grand scheme of things if that’s where you expect it to be that’s not very fascinating, but it is at least interesting.
Zoe Rothblatt 16:39
And for me, one of the most interesting things I learned from you is how you’re framing these results in terms of the future and next elections and policy priorities going forward. So that was really helpful.
Steven Newmark 16:51
We hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 17:02
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 17:07
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 17:12
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. We’re also on YouTube now, so check us out there. I’m Zoe Rothblatt.
Steven Newmark 17:29
I’m Steven Newmark. We’ll see you next time.
Narrator 17:34
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 7- Cancer Fashionista: Advocating in Style
In this episode, Melissa Berry, founder of Cancer Fashionista and a fashion and beauty publicist, shares how her breast cancer diagnosis sparked her to become an advocate. Through her blog, she now provides fashion, beauty, and wellness advice to help patients feel good about themselves and feel better prepared to manage their care.
“Your doctor is your consultant. Doctors are not gods; they’re human beings. So go to them with information and questions, and come up with a health plan for you. I think that’s just the golden key right there,” says Melissa.


Cancer Fashionista: Advocating in Style
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Melissa Berry 00:08
Your doctor is your consultant. Doctors are not gods. I mean, they’re human beings. So go to them with information and questions and come up with a health plan for you. I think that’s just the golden key right there.
Steven Newmark 00:23
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 00:32
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 health care world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:50
We sure do and as a reminder, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shout-out to Let’s Get Personal, a new podcast that’s hosted by our colleague Dr. Daniel Hernandez. In this podcast, Daniel speaks with rheumatoid arthritis advocates about their treatment journey, you know, both the emotional and physical aspects. And what’s pretty cool is that Daniel also sits down with Dr. Grace Wright to hear from her about working with patients. So definitely check it out.
Steven Newmark 01:19
Yeah, sounds great. And I look forward to hearing Dr. Hernandez.
Zoe Rothblatt 01:22
Alright, let’s start as we always do with a listener comment. Ready, Steven?
Steven Newmark 01:26
I’m ready.
Zoe Rothblatt 01:27
This one is from Lisa D. who wrote: “Can’t get enough of this podcast”
Steven Newmark 01:31
Thanks Lisa! Well, we can’t get enough of doing the podcast. So we’re glad to hear that you’re listening.
Zoe Rothblatt 01:36
Good. Thank you so much. Well, Steven, I’m excited for you to hear the interview that I had with Melissa Berry, who’s the founder of Cancer Fashionista. We talked about her breast cancer diagnosis and how that sparked her to become an advocate, specifically in starting Cancer Fashionista to bridge the gap between life saving cancer treatments and fashion, beauty and wellness advice. So I’m really excited for you and our listeners to hear that chat.
Steven Newmark 02:01
Great. I’m excited to listen. But first we have some news updates.
Zoe Rothblatt 02:04
All right, let’s dive in.
Steven Newmark 02:05
Let’s do it. First up is something… probably not a big surprise. There is a shortage of therapists around.
Zoe Rothblatt 02:12
Yeah, so this coincides with the rise of anxiety and depression. We know it’s been on the rise since the start of the pandemic. And obviously that’s getting worse by a shortage of mental health counselors. And you know, this is just always concerning for our community because often chronic illness and mental health go hand in hand and we know that many in our communities still feel really isolated and left behind. So the therapist shortage is definitely impacting people with chronic illness.
Steven Newmark 02:38
Yeah, absolutely. You know, if you’re in this situation, you know, some tips that might help, you should check out any programs that your employer or school, if you’re a student, may offer as part of your benefits. You can ask your provider for recommendations, maybe your specialist like your rheumatologist or gastroenterologist know someone that they can recommend patients to. Also there are a lot of great apps and hotlines out there now.
Zoe Rothblatt 02:59
Yeah, really good tips. And I would say overall, just you know, remember to advocate for yourself and take care of your mental health. Such an important part of self-advocacy is making sure you’re emotionally and mentally well. And you know, I’ll also give another shout-out to our colleagues who host the Wellness Evolution podcast, there’s some really great breathing breaks on there, if you ever need just a moment to breathe.
Steven Newmark 03:20
Yeah. In other news, open enrollment for the Marketplace Health Insurance began on November 1.
Zoe Rothblatt 03:26
Yeah. And you can enroll through mid-January. This is, you know, the open Marketplace Insurance is part of the Affordable Care Act. If you go to healthcare.gov, you should be able to walk through step by step and look at the different plans available.
Steven Newmark 03:38
Right. Premiums are increasing this year, generally, but most folks should not be affected by this higher cost because Congress passed a three year extension of enhanced subsidies as part of the Inflation Reduction Act.
Zoe Rothblatt 03:49
Yeah. Good point, Steven. I remember when we talked about that in a few episodes back about the Inflation Reduction Act and what was in it to help patients and you know, it’s cool to see it coming in reality now as open enrollment season starts. Especially because insurance is so important for our community. You know, there’s definitely things you want to look for: what is your monthly premium? What does your deductible look like? What are the copays on your medication and definitely talk to your doctors see if they’re covered under certain plans.
Steven Newmark 04:18
Right. And of course, you want to make sure that your medications are covered under any plan that you select.
Zoe Rothblatt 04:22
For sure. So you know, our last bit of news is that ACR, the American College of Rheumatology conference is coming soon. You know, I’ll be presenting a patient poster and I know a bunch of people from our team are coming along. I believe you are too Steven?
Steven Newmark 04:36
Yeah. ACR is an annual meeting where rheumatology health professionals from around the world gather and share cutting edge research and best clinical practices.
Zoe Rothblatt 04:45
Yeah, and what’s really exciting is we, at GHLF, have a bunch of research coming out and a lot of patient perspectives like I just mentioned, so you know, follow along on Twitter, and we’ll be sure to keep you guys updated on the latest news coming from this conference and hopefully do a wrap up on our podcasts like we did for EULAR, the European Conference.
Steven Newmark 05:05
Great. Well, I’m excited to hear about your interview.
Zoe Rothblatt 05:08
Yeah. So like I mentioned I spoke with Melissa Berry, founder of Cancer Fashionista about her advocacy. Melissa is a fashion and beauty publicist with a family history of breast cancer. She also hosts the Dear Cancer I’m Beautiful podcast, which is the first of its kind to bridge the gap between life saving cancer treatment and fashion, beauty and wellness advice. Welcome, Melissa to the Health Advocates.
Melissa Berry 05:30
Thank you so much Zoe for having me on the show. I’m so excited to be here.
Zoe Rothblatt 05:34
I’m so excited to have you here and for our listeners to get to know you. So tell us about Cancer Fashionista. Were you always the Cancer Fashionista? What got you started?
Melissa Berry 05:43
Absolutely Zoe. Thank you again. So I always loved fashion. I think I was probably born playing with Barbie dolls. I’ve always enjoyed it. I always had a passion for it. As a teenager loved flipping through magazines. And even in high school, there was a fashion design class that I participated in and loved making the costumes for the high school musicals. And then I decided to go to Marist College where I majored in fashion design and merchandising. And that’s where I really, truly dove into the world of fashion. We have designer critics like Marc Jacobs and Michael Kors and Isaac Mizrahi, who I worked with. So I really had a wonderful time in college exploring my fashionista side. And out of college, I worked as a fashion editor. I worked for a magazine at one point, and I worked for some designers. And then I found my home with public relations. So the kind of fashion and beauty publicist and that was my first career.
Zoe Rothblatt 06:41
And then where does the cancer part come into it? I’m hearing a lot about fashionista. How did you become the Cancer Fashionista?
Melissa Berry 06:48
Absolutely. So I was having a great time with my career. I was married at the time, have two beautiful daughters who are now young ladies now. And you know, I was busy with life. I was juggling career and raising children and all that. And my mom was like, you know, there’s a lot of breast cancer in my family because my mom had breast cancer. Her mother had breast cancer. My grandma’s sister had breast cancer, my grandma’s sister’s daughter had breast cancer. And so when I was about 32, my mom was like: “Look, I know you’re busy. I just think it would be a good idea to get tested for the BRCA gene.” And you know, when you’re the height of your career, you’re raising children, last thing you want to worry about is walking around with the idea that you are probably going to get cancer. But then I decided to kind of look at it from a different angle. I thought, you know what, maybe this could be a roadmap to my health. This could be my GPS to my health. So I kind of assumed that I had the gene because there’s just so much family history, but there was only a 50/50 chance. So I did take the test. And I did test positive for the BRCA gene, which meant that I was very closely monitored for many years. I had a clinical exam where they feel your breasts. I had MRI and mammograms pretty much every six months, and I was under very close watch. I had my BRCA test at 32. I was closely monitored. And then at 42 I just went for a routine mammogram. I was honestly… I was going to a hospital in New York and it was the one time that my oncologist was like Melissa… because I live in New Jersey. He’s like you do not need to go to New York for your mammograms. So I went to a local hospital, which is a wonderful hospital, Englewood hospital, and they… as soon as I went in for my… not even the mammogram, it was the technician who did the clinical. What I didn’t know, Zoe, is that, you know, because I went in there and they were like, well, we need to do a mammogram. And I was like: “Well, you know, I really just had an MRI”. They’re like: “No, no, no, we still need to do this.” So the clinician actually felt a very tiny lump. It didn’t even show up on the mammogram. In the same office visit. The doctor was like, you know, I see something, they did a biopsy, and lo and behold, it was breast cancer. They found it in that very same office visit.
Zoe Rothblatt 09:00
Wow. Yeah, I can’t even imagine, you’re… you’re going through the motions for so long of preventative care. And then all of a sudden, one day you’re faced with this diagnosis, what was going through your head at that time?
Melissa Berry 09:12
Honestly, it was like a very bad dream. And you know, I’ll be honest, you hear about breast cancer, the pink ribbon, all that even as much as it wasn’t my family, you feel like that’s something that someone else gets. It’s not something that you get, and it was very surreal. And I remember when they told me that I had breast cancer, I thought it must be something else. It must be some weird mistake. And then the next day when I went from my consult, I said: “Well, am I going to need chemotherapy?” And they were like: “Yeah,” and I was like: “Is my hair gonna fall out?” They’re like: “Yes,” I mean, the whole thing was just… It happened so quickly. And when I was diagnosed with triple negative breast cancer, and now I’ll be honest, you know, before all this, I didn’t know there were different types of breast cancer. So I thought, well, that sounds triple bad and you know, luckily there’s an incredible support system in place for those with triple negative breast cancer, which I’m so proud to be the board chair of now, which is the Triple Negative Breast Cancer Foundation. And they were incredible, so many great resources, you know: Zoom meetings and chat rooms and all that great stuff that they offer now and thank God for that because it’s a really scary thing to be diagnosed with… with any kind of cancer.
Zoe Rothblatt 10:23
What was the journey like going from feeling that fear in the doctor’s office and you know, not really knowing what your future held to now be sitting on the board of this group and being a voice for Cancer Fashionista and women out there, people out there struggling with cancer and beauty?
Melissa Berry 10:43
You know, it’s also very surreal. So I’ll be honest, if I stop and think about it, I never planned to be a breast cancer advocate. I never planned to have a blog about post mastectomy bras and wigs and lashes. You know, I think sometimes the greatest ideas are born out of pure necessity. And, you know, my background was beauty and fashion PR and when I was first diagnosed, and I knew: Thank God, you know, I was stage one, I was very lucky. No known involvement. It was very early stage and very treatable. And you know, once I knew what my course of treatment was, I thought I don’t even want to look like a supermodel. How do I look like myself going to meetings going to photoshoots and I hit the internet. And I’m like: “All right, where are the wigs, where are the lashes, where are the post mastectomy bras.” And there was nothing in one place. And I thought where is the Vogue of breast cancer because a lot of the products look like something your doctor would have made. Very medicinal. And it was really hard to find these niche brands like Anaono intimates, who I love, to do, you know, products that served a purpose that were functional, but they are also beautiful, where I didn’t have to sacrifice my integrity. So that’s really how Cancer Fashionista was born. It started with a list a list of things that I loved that made me feel beautiful. And then my mom and then my friends would hear if someone that was diagnosed, they’d be like: “Where’s that list,” you know, and then my really good friend Tina, who she was like my arms and legs throughout the whole thing, helping me with getting my kids to school and all that. She has a British accent. She was like: “You want to start a blog” and I’m like: “Tina, I can’t even make dinner. I’m in the middle of chemo. Fine, I’ll do it.” You know, it was like a challenge. And I know it sounds so weird but literally one day I just woke up. And like Cancer Fashionista, it was just like on the tip of my tongue. It’s not like I sat in a board meeting and hired people and decided to start this thing. This was just out of my own need to feel beautiful. And to really maintain my integrity throughout the treatment process and beyond.
Zoe Rothblatt 12:32
That’s amazing. And you know, I can see that your voice for so many, especially talking about that there was nothing out there for you. And now you’ve created this empire, dare I say, where people who are newly diagnosed can now go online and see someone and have products that work for them whereas you didn’t. What was that like when you started noticing people looking to you as an advocate?
Melissa Berry 12:55
Well, thank you for those kind words. And you know, I don’t even look at it as an empire Zoe, I feel like it’s more like a sisterhood. You know, I consider myself you know, it’s like, I never had a big sister. I feel like a big sister will tell you like what to wear on the first date, or like what to say on your interview. And like, you know, friends and family are awesome. But like, we need the big sisters. It’s been like: “Girl all right, the treatment is not that bad. Yes, your hair’s gonna fall out. But this is what you do.” You know, it’s totally a different type of community. But I’m just so grateful, you know, to be able to share the resources and to be able to connect women with each other to support one another. I think it’s so important.
Zoe Rothblatt 13:32
I want to go back to something you mentioned earlier that you know, your mom had had this tough conversation with you about BRCA status in the family and breast cancer history. What advice do you have for people that are looking to have these kinds of conversations about their house with family members?
Melissa Berry 13:49
It could save your life. It’s really that simple. You guys, like take the fear factor out of: “Oh, but I don’t want to know,” listen to the back of our minds, none of us want to know. But if you know that you have a genetic predisposition to something like breast cancer, there’s so many things you can do to prevent it. So why not jump ahead of the curve, cheat the system is how I look at it. And that goes for anything: MS, diabetes, cancer. It’s incredible what they can do with genetic testing these days. So if there is something in your family that’s really predominant, it cannot hurt to ask your primary care physician, you know: “Hey, can I get a panel done? I just want to see if I have a genetic predisposition to something and what can I do to prevent that disease from happening.” We might as well use the science to our advantage? Right?
Zoe Rothblatt 14:32
Exactly. And like you’re mentioning, like such a big part of advocacy is, you know, speaking up at the doctor’s office and asking for those tests, because the doctor may not know about your family history. And if you’re having these conversations in the house, that’s, you know, one part of the advocacy and then bringing it into the doctor’s office and taking care of yourself and the way you did is such a tremendous part of staying healthy, being healthy and taking care of your body.
Melissa Berry 14:57
Thank you for saying that and I couldn’t agree more and you know I’m lucky enough to have conversations with so many incredible other advocates and the one theme that keeps coming up, and I love this, is that your doctor is your consultant. Doctors are not gods. I mean, they’re human beings. So go to them with information and questions and come up with a health plan for you. I think that’s just the golden key right there.
Zoe Rothblatt 15:19
I love that so much, come up with a health plan for you. That’s really what it’s all about. It’s you and your health and your life. And you should have a say in the care. So yeah, I totally agree. Melissa. Lastly, before you go, I wanted to ask you about your podcast, Dear Cancer, I’m Beautiful. Can you tell us about this podcast and where our listeners can find it?
Melissa Berry 15:37
Absolutely. Dear Cancer I’m Beautiful was definitely a COVID idea. It was something that I always wanted to do. But it was a great time to launch it because everyone was kind of stuck at home. But there’s so many of us, so many of my sister thrivers that needed the support, needed the information. So I thought to myself, you know, I’d love to create a library of information. So I talk about everything from postmastectomy lingerie, to clean beauty, to bone health. I have a whole series dedicated to that. So the name of the podcast is Dear Cancer, I’m Beautiful. And then I’ve got a bone health series called Beautiful To The Bone, and it’s been absolutely incredible because I just turned 50 last year, and it was the first time that I ever heard the words DEXA scan. I never knew how important it was to also be really proactive about your bone health. And we could probably have another conversation about bone health and breast cancer. It’s so important. Bone health in general for anybody, men and women alike.
Zoe Rothblatt 16:31
Yeah. Well, we’d love to have you on for that conversation. So I welcome that invite. Thank you, Melissa, so much for joining us today. We are so happy to have had you on. We loved hearing your story and all the amazing advocacy you do.
Melissa Berry 16:43
Thank you so much for having me. And I forgot to mention for Dear Cancer I’m Beautiful. You can check it out on Spotify. And then if you want to follow me, I do most of my fun on Instagram. And that’s at Cancer Fashionista. But I’m also on Facebook and Twitter.
Zoe Rothblatt 16:56
Awesome. Thank you.
Melissa Berry 16:57
Thank you guys. And thank you for everything that you do. It’s really such a pleasure to be working with you and having these conversations here.
Zoe Rothblatt 17:03
Thank you so much.
Steven Newmark 17:04
Wow. Well, that was great. So fascinating to hear from Melissa.
Zoe Rothblatt 17:09
Well, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 17:12
Well, I learned from Melissa that advocacy comes from all different corners and from folks with all different backgrounds. So it’s interesting to have someone from the fashion world who is also an advocate for patients.
Zoe Rothblatt 17:22
And I learned from Melissa the importance of knowing your family history and having these tough conversations with your loved ones.
Steven Newmark 17:29
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 17:42
And who knows, whatever you share maybe included in our listener feedback portion of future episodes.
Steven Newmark 17:47
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 17:52
Well 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, give us a rating and write a review on Apple podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 18:11
I’m Steven Newmark. We’ll see you next time.
Narrator 18:16
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 6- Copay Accumulators Explained: Why Advocacy Matters
The impact of copay accumulator policies can create additional financial difficulties for patients by limiting payments that count toward their annual deductibles and out-of-pocket maximums. As a result, millions of patients who are already struggling with the financial and physical toll of their condition may delay care or stop taking their medication altogether leading to worsening health.
“Copay accumulator adjusters are a program used by insurance companies to force patients to take medications that they determine are cheaper for them. And, in reality, it’s actually just cheaper for the insurance company,” says Corey Greenblatt, Senior Manager of Policy and Advocacy at GHLF.
Our guests, JP Summers, Patient Advocate and Community Outreach Manager at GHLF, and Corey, tell us more about their advocacy efforts and about their support for the bipartisan bill called the HELP Copays Act.


Copay Accumulators Explained: Why Advocacy Matters
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Corey Greenblatt 00:08
Copay accumulator adjusters are a program used by insurance companies to force patients to take medications that they determine are cheaper for them. And in reality, it’s actually just cheaper for the insurance company.
Steven Newmark 00:23
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 00:32
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 health care world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:50
We sure do and as a reminder, you can check all of our podcasts out at ghlf.org/listen. This week will give a shout-out to our colleagues, Conner and Robert. They recently dropped an episode on the 340B program explaining it; who it serves and what’s happening now. So it’s a great breakdown of policy. So check out Healthcare Matters.
Steven Newmark 01:11
Yeah, 340B, it can be a complicated topic, and in particular, whether it’s serving the needs of patients or serving others. So it’s an interesting discussion. I actually already listened to it and I highly encourage others to do the same.
Zoe Rothblatt 01:24
Excellent. Well, let’s start with the listener comment. Are you ready, Steven?
Steven Newmark 01:27
I am ready.
Zoe Rothblatt 01:28
This one is from Casey V who wrote great podcast I enjoy tuning in weekly.
Steven Newmark 01:33
Well, thanks, Casey. We enjoy doing what we do weekly as well. And we’re glad to hear that you’re listening.
Zoe Rothblatt 01:38
Thank you so much.
Steven Newmark 01:40
Well, this week, we have special guests here with us, our colleagues, Corey Greenblatt and JP Summers. They are here today to talk to us about their recent advocacy to help patients use copay assistance. Stay tuned for that discussion. But first, we have some news updates.
Zoe Rothblatt 01:53
All right, let’s dive in.
Steven Newmark 01:55
Absolutely. We’ll start in Massachusetts, where legislation was passed by both the Massachusetts House and Senate after being first introduced over five years ago. This is a step therapy protection law. And it’s one of the strongest step therapy laws passed in the country. And I have to note, because he’s going to be on our program in a little bit, that Corey Greenblat has been working on this for almost the entirety of his tenure here at GHLF. So congratulations to Corey. That’s a real great example that policy moves slowly, but it does move.
Zoe Rothblatt 02:23
100% and big congrats to Corey and all the advocates that have been arguing and fighting over the years to say: “No, we need protections, we should get the medication at the right time that our doctor prescribes.” So I’m hoping that this passes. I think that Governor Baker has 10 days to sign this bill, otherwise, it’ll die and it’d be repassed next year. And you know, I’m hoping that we can see the governor sign this quickly.
Steven Newmark 02:46
Absolutely. Hopefully, we’ll have an update on that within 10 days.
Zoe Rothblatt 02:50
Okay. Well, Steven, I know you love these, we have results from our latest COVID-19 Patient Support Program quick poll.
Steven Newmark 02:56
All right, let’s hear it.
Zoe Rothblatt 02:57
So we asked about holiday plans and COVID concerns which we’ve asked about the past few years. So it’s interesting to get that year over year data. And what we found was that most 83% don’t plan on traveling and if they do, it’s just to a different state overall, most are celebrating in person with their usual friends or family or with just their household. And it seems like most are celebrating like they did before the pandemic with only 5% canceling plans or celebrating virtually. Steven does that ring true for you in conversations that you’re hearing?
Steven Newmark 03:30
Yeah, for sure. I mean, I would still heavily encourage folks to do some of the things that we all know what to do when it comes to being safe around the holidays. Testing right before having everyone who’s visiting a location. Test right before. Our loved ones should feel comfortable enough taking a test, you know, so that we can all feel safe and be safe. I would also encourage a little bit of social distancing, if you will, or almost like a mini isolation period. But before, to the extent you’re able to do that, I know it’s not always easy, but anything you can do to help minimize contact. And of course, encourage friends and family to be even more aggressive than they perhaps normally would be with the mask wearing, in the days, and I would go so far as to say a minimum of a week before, if not 10 days before the holidays.
Zoe Rothblatt 04:14
Yeah. Oh, good tips. And don’t forget to get your flu shot and your COVID Booster. The bivalent booster.
Steven Newmark 04:20
Definitely be ready.
Zoe Rothblatt 04:21
Yeah, the last piece of this was just from the free response section. So many people wrote in that they’re a bit nervous but feeling hopeful and looking forward to the celebrations and that just made me feel hopeful that our community is feeling like they can participate in this holiday season in one way or another and it’s been a really hard few years. So I’m hoping for the best for us.
Steven Newmark 04:44
Absolutely. There are a lot of mental health benefits which translate into physical health benefits, as we know, for getting together with one’s family. Well, most of the time, some folks maybe not but hopefully there are mental health benefits to see our loved ones And we hope you get the opportunity to do that. So like we mentioned, we have with us today Corey Greenblatt and JP summers. Welcome!
Zoe Rothblatt 05:06
Welcome to The Health Advocates, Corey and JP. Would you like to introduce yourselves to our listeners?
JP Summers 05:12
Sure. My name is JP summers. I’m a Patient Advocate, Community Outreach Manager at the Global Healthy Living Foundation. I’m also someone living with several chronic illnesses.
Corey Greenblatt 05:21
And hi everyone, I’m Corey Greenblatt. I’ve been here a couple times, happy to be back. Senior Manager of Policy and Advocacy with the Global Healthy Living Foundation. I am also a type one diabetic patient. So all of this definitely strikes home to me, in addition to being what I work on every day.
Steven Newmark 05:35
Great. Let me start with you, JP, why don’t you just tell us about the recent virtual advocacy day that you guys participated in.
JP Summers 05:42
Sure, Steven. So last week, Corey and I were able to participate with the virtual advocacy, which was the All Copays Count Coalition Hill Day. And that was my first time doing a virtual event for this particular issue. And I had a wonderful group of people from different organizations that participated. And each person played a significant role in speaking with the senator’s office. And it was just overall a great experience as something that I was proud and honored to be a part of, but also as someone living with several chronic illnesses, it really was something I needed to voice my opinion on because I as well had been through that process, not once, not twice, but several times, for myself, but also with my son who also was diagnosed with chronic migraine. So again, it was a personal matter for me, but also being a part of GHLF, it was something that again, I felt the need to do and voice my opinion to raise awareness.
Zoe Rothblatt 06:44
Thank you so much, JP. Before we dive in further to your experience, Corey, this day was focused on copay accumulators. Can you brief us on what those are?
Corey Greenblatt 06:54
Sure, so copay accumulator adjusters… I’ll start with kind of what they are and then a little analogy about them. So copay accumulator adjusters are a program used by insurance companies to force patients to take medications that they determine are cheaper for them. And in reality, it’s actually just cheaper for the insurance company. The way that this works in practice and the anecdote that I always go back to, is something I learned when I was first learning about this. And I refer to it as the drive thru example. And it’s essentially that imagine you’re at a drive thru and you feel generous, you decide to pay for the person behind you, that person goes up to the register and then the person at the register says: “Hey, the person who just was here decided to pay for you. But because you didn’t pay for yourself, we’re going to make you pay because we believe that you need to have some skin in the game.” And that’s essentially what a copay accumulator adjuster does. It says that even though you as the patient have paid using a copay assistance program, and we as the insurance company have accepted that money, we are still going to force you to pay a second time because we believe that you should pay your own medical costs and someone else shouldn’t pay it for you. That’s essentially what a copay accumulator adjuster does. And in reality, there are a lot of reasons this is not a nicer good program. But one of the main ones is that the key argument that insurance companies use for these is that they are forcing… or pushing patients away from expensive brand medications to cheaper alternatives. The problem with that logic is that 99% of the medications that have copay assistance programs do not have a generic equivalent. So it is not just taking a patient from a expensive brand to a cheaper generic. It is actually just taking them from an expensive brand to a brand medication that the insurance company would prefer.
Steven Newmark 08:42
Yeah, and Corey, can you explain the legislation that you and JP were advocating?
Corey Greenblatt 08:46
Sure, so it’s called the HELP Copays Act and essentially what this bill would do is… it’s very simple, it says that any payment being made on behalf of a patient, whether it comes from the patient, a manufacturer’s assistance program, a religious organization, a charitable organization, or a family member who’s being generous, all of those payment methods would be forced to count toward the patient’s out-of-pocket maximum and deductible spending so that they’d be able to reach those thresholds and those benchmarks much quicker than they’d be able to reach them otherwise.
Zoe Rothblatt 09:19
And JP you mentioned, you’ve had experience and trouble with using copay assistance. What would a bill like this mean to you if passed?
JP Summers 09:27
Well, on a personal level, when I first started going through my chronic illness journey, I was on different medications, and I did not realize what was happening until I would go to get my prescriptions filled and all of a sudden, you know, I’m looking at what I just paid before… previously and what I’m paying now and couldn’t understand why has, you know, the amount not changed. But also each medication I was prescribed… again, I was going through different kinds because when you’re chronically ill it’s a process, you don’t know what treatment regimen is going to work best for you, especially when you have other conditions because what people also don’t know is that when you have one diagnosis, another medication can actually make it worse. So it was a process. And it really was several years that I was dealing with this. And six months after I was diagnosed with my first chronic illness, which was chronic migraine, my son was diagnosed with chronic abdominal migraine and it was just a repeat process with him. And again to go through that and when you go from a household that has two incomes to one, because I was so ill that I could not work, that is something that affects you on a financial level, but as well as emotional because now you’re in a situation where you’re having to relook at your finances. And that’s not something you should have to do when you’re trying to focus on how do you get better, you know. I didn’t work, so how was I going to, you know, focus on my health when I was worried about the financial strain it was putting on my family.
Steven Newmark 11:04
Corey, what is it like working with the All Copays Count Coalition?
Corey Greenblatt 11:07
It’s really great. One of the best things about the All Copays Count Coalition is the diversity in patient groups and provider groups that are represented in the coalition. We have patients represented from DERM communities, rheumatic communities, migraine communities, HIV, AIDS communities, hepatitis, all of these patient groups came together to represent this issue. And it’s something that it flows through the coalition where we have lots of voices and lots of patients represented.
Zoe Rothblatt 11:35
Corey, so from what I understand this was a federal virtual advocacy day. Do states have bills like this? What’s going on amongst the states?
Corey Greenblatt 11:44
Yeah, states do have bills like this. There’s around 15 to 20 states, I believe at this point, maybe a little less that have passed the legislation regarding copay accumulator adjusters. However, similar to the issues we have with step therapy laws, these laws at the state level only really impact a small subset of the state population. So we really need federal legislation to come in and impact a large group of patients across the entire country with the flip of a switch.
Steven Newmark 12:14
Great. And JP, can you tell us how other patients like yourself can get involved?
JP Summers 12:18
So we have the 50 State Network, and it gives you an opportunity to voice your opinion, you know, whether it’s medical condition, the state you live in, anything that is pressing, a pressing issue, that’s, you know, you want to share your story. That’s the way to get involved. But also, you know, just share with others. And when you look at going through the process I did, I didn’t know that was the copay accumulator practice, I had no idea. So again, just sharing your story, because others will then speak up about it. So there’s definitely a lot to be done. But as Corey mentioned, there are several states already that implemented it. But again, we still have a way to go.
Zoe Rothblatt 12:59
Well, last question for you, both Corey and JP, what’s it like when you get into those meetings, and you’re having a conversation with elected officials? What’s… you know, going through your mind, what are you feeling?
Corey Greenblatt 13:09
I love it. I always love those meetings. They’re exciting to me, because in those meetings, as patients, we are the experts, we’re the ones who are telling how the lives we are experiencing, and that our community is experiencing, and it is the legislative officials job to listen, and it is a powerful position to go in knowing that going into that meeting, and having that point of view, and that’s a point of view that at GHLF and at the 50 State Network we try to instill in all the patients we work with.
Zoe Rothblatt 13:41
And JP, what’s it like for you?
JP Summers 13:43
I actually feel the same way as Corey, you know, it’s something that I feel like I get a piece of my former life back each time I share my story, each time I get to advocate along with other patients. I feel like I’m a part of an amazing community, and that you have that support, and it’s something that I just love doing. I could not imagine not doing it. And every time I am able to do it virtually or in person, again, it feels like there’s a piece of me that comes back that I lost years ago when I got my first diagnosis. And again, I just… I love it. I really do.
Zoe Rothblatt 14:20
Well, thank you both so much.
Steven Newmark 14:22
Yeah, thank you both. Before we let you go, I just had to mention to Corey, a big congratulations. I mentioned at the top before you joined us about the Massachusetts legislation on step therapy reform, and I know the work that you’ve done, I think I mentioned, almost the entirety of your career here at GHLF and so that’s fantastic. And it also just shows how long it takes to actually pass a piece of legislation. It’s not like the movies. You know, Mr. Smith Goes to Washington, you just go down and you argue for something and within a few months, it’s done. It takes years. You’ve been doing it for years and congratulations!
Corey Greenblatt 14:54
Thank you very much. I agree. I always say that legislation and legislative calendars tend to move at a snail’s pace when they’re running very fast. So it definitely can be a long payoff on things. But this is something that we’ve worked hard for. Not done yet! Still need to get the governor to sign it and we have a couple days to get that to happen. So anyone living in Boston who’s listening to this, give Governor Baker a call and see if he has signed the bill or not, and try and convince him that it’s an important thing to do. But definitely a good feeling to get this far!
Steven Newmark 15:25
Excellent. Well, thank you both.
Zoe Rothblatt 15:27
Yeah. Thank you both so much for joining us today.
JP Summers 15:30
Yes, thank you, Zoe, and Steven, for having me on today.
Corey Greenblatt 15:33
Yeah. Thanks you two for having us back on again. This was awesome.
Zoe Rothblatt 15:38
All right, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 15:42
Well, I learned from JP and Corey the value of advocacy. You know, we say it all the time, but there’s no replacement for actually going directly to policymakers and speaking up on behalf of yourself and others similarly situated.
Zoe Rothblatt 15:57
Agreed, I have a similar learning and just about you know, the power of advocacy and the patient voice, and something that stuck out to me was when JP said that she gets years back on her life every time she advocates and really turning that pain into purpose and helping others out there.
Steven Newmark 16:14
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] or better yet, include a short video or audio clip.
Zoe Rothblatt 16:24
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 16:30
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 16:35
Well, 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 like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 16:53
I’m Steven Newmark. We’ll see you next time.
Narrator 16:59
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
S5, Ep 5- COVID-19: Vaccine Skepticism: A Worrisome Trend Beyond COVID-19
COVID-19 vaccines have been effective in saving lives but as winter approaches and yet another coronavirus surge is expected, public health leaders face growing skepticism and apathy toward the vaccines. Worse yet, it seems that the politicized backlash against COVID-19 vaccinations is fostering skepticism about routine vaccinations — in general — from childhood immunizations to flu shots.
More than 80 anti-vaccine bills have been introduced in state legislatures. While vaccine skepticism remains a minority position in the U.S., the general consensus on vaccine importance and value is not quite as strong as it once was.


Vaccine Skepticism: A Worrisome Trend Beyond COVID-19
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:08
Anti-vaccine sentiment is higher now than it was even before the pandemic began. There’s some irony in that. We dealt with a global pandemic, and it was vaccines and scientific development generally that are helping get us out of this pandemic and moving into a safer phase. And yet vaccine skepticism is higher than it’s ever been.
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 00:43
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. But before we get started, we want to be sure that everyone takes listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:56
We sure do. And as a reminder to our listeners, you can check them all out at ghlf.org/listen. If I can brag for a moment for myself, check out my other podcast ‘Breaking Down Biosimilars’.
Steven Newmark 01:10
Yes
Zoe Rothblatt 01:10
We published new episodes, which feature just a really candid two-part conversation between patient advocates Lena Andersen and Cristina Montoya on their experience with both biologics and biosimilars. So definitely check that out.
Steven Newmark 01:23
I will. Great show! It’s my second favorite show.
Zoe Rothblatt 01:27
Awesome. Well, let’s start with a listener comment. Are you ready, Steven?
Steven Newmark 01:30
I am ready.
Zoe Rothblatt 01:31
This one came from Gabe T, who wrote: “Great episode on advocating for health care issues.”
Steven Newmark 01:37
Thank you, Gabe, and great on you for advocating yourself. If you’re listening to us, you’re advocating, that in and of itself is being part of the team, and hopefully we’ll see you in Washington or other state capitals.
Zoe Rothblatt 01:47
Yeah, thanks for advocating with us listeners. So today, we’ll discuss the lagging COVID booster vaccine rates, and just overall the growing concern over vaccine skepticism. But first, as we always do, we have some news updates.
Steven Newmark 02:02
The first piece of news is: it looks like we may get an early start to flu season. The CDC released his first fall FluView report for this season. And while flu activity is overall low, there are increases in certain parts of the country, specifically the Southeast and South Central regions.
Zoe Rothblatt 02:17
You know, this is similar to what we saw in Australia, the southern hemisphere gets their flu season before us. And they also had an earlier start to the flu season. And it was the H3N2 virus, which is the same as here. So ultimately, I guess it’s good. That’s following a pattern that we’ve seen earlier this year.
Steven Newmark 02:35
So bottom line, if you’re listening to this, no matter what time of year, what time of day, whenever you’re listening to this, you should be getting vaccinated.
Zoe Rothblatt 02:42
True. And yeah, this is a good point because some people have questions about when to get the flu vaccine. So it lasts for the whole season. Right? And it’s really important if we see that flu is starting early, you want to make sure to get it now and don’t wait.
Steven Newmark 02:54
Definitely! I’m one of those people. I was waiting until November. I told my parents to wait until November and when I saw the news, I immediately called my parents and I said don’t wait, go get it right now. And they did.
Zoe Rothblatt 03:04
Good advocacy Steven!
Steven Newmark 03:06
There you go. What else is news?
Zoe Rothblatt 03:08
So the U.S. authorized COVID boosters for children as young as five which is really exciting. This is both for the Moderna and the Pfizer shots so we have 2 bivalent boosters available for children now.
Steven Newmark 03:20
Yeah, the pediatric doses are being shipped out to pharmacies as we record and hopefully should be available soon if not by the time you listen to this.
Zoe Rothblatt 03:28
Steven, next up in our piece of news as that October 20th marks World Osteoporosis Day and I just want to bring this up because it’s a good time to advocate for yourself and be proactive about your health and your family’s health. So bring up bone health with your doctor and if you’re wondering about osteoporosis, here are some fast facts. So the first one; osteoporosis is a condition in which bones become weak and brittle.
Steven Newmark 03:55
That one I knew.
Zoe Rothblatt 03:56
Then, you know, if you’re wondering how common it is one in three women over the age of 50 will suffer from broken bone due to osteoporosis.
Steven Newmark 04:04
Wow, that one I did not know.
Zoe Rothblatt 04:05
Number three; staying active can help build and maintain strong bones which reduces the risk of developing osteoporosis.
Steven Newmark 04:12
That one I knew.
Zoe Rothblatt 04:13
And number four; the DEXA scan is an imaging test that measures bone density and these scan results can help provide details about your risk for osteoporosis and fractures.
Steven Newmark 04:24
That one I knew and that one is a very important point. Definitely talk to your doctor about getting a DEXA scan and how often you should get a new scan as a can help identify osteoporosis early, which is important.
Zoe Rothblatt 04:35
Yeah, definitely. You know, so much of advocating is just learning the information and taking it and bringing it up with your doctor. So you know we share these facts and hope that it enhances your shared decision making.
Steven Newmark 04:46
Definitely. Moving on to our main topic for today. We want to talk about how anti-vaccine sentiment is higher now than it was even before the pandemic began. There’s some irony in that. We dealt with a global pandemic, and it was vaccines and scientific development generally that are helping get us out of this pandemic and moving into a safer phase. And yet vaccine skepticism is higher than it’s ever been.
Zoe Rothblatt 05:10
Yeah. How did we get here? You know, let’s talk about that.
Steven Newmark 05:14
Right?
Zoe Rothblatt 05:14
What is going on that we got to this phase? And how can we help get out of it? Maybe if we can talk about that, too?
Steven Newmark 05:21
Yeah, that’s a good question. We fear that it’s become so politicized. That’s the first thing. There’s a political bent that we see in political society, both extreme on the left and extreme on the right, who tend to have a skepticism about vaccines, generally, sometimes about medicine in the medical world, even just general therapeutics and other products that those of us who are chronically ill rely upon. And again, on the political spectrum you see this from both on the extreme far left and the extreme far right.
Zoe Rothblatt 05:50
And, you know, for years, I guess we’ve been fighting this vaccine issue. It’s not a new one, per se.
Steven Newmark 05:56
Yeah
Zoe Rothblatt 05:56
You know, we’ve been advocating for school vaccinations mandatory, you know, to have people get their vaccines because it protects our community who lives with chronic illness who may not be able to get certain vaccines or may have a diminished response. So that community immunity known as herd immunity is really important. We’ve been fighting it for years, but it felt like so many people were on our side, you know, pro vaccine, and it was a small but loud group we were fighting against, and now it feels like that group is getting louder and louder.
Steven Newmark 06:27
Yeah, just to put it in a political lens. There are ton of anti-vaccine mandate bills that are on state legislative dockets this year. Specifically, there are more than 80 anti-vaccine bills that have been introduced, which…
Zoe Rothblatt 06:38
Wait, pause. 80 over this country, we have 50 states. So that’s a lot, right?
Steven Newmark 06:45
That is, that is a lot. And when I say anti-vaccine bills, I’m talking about bills that are getting rid of vaccine mandates for children, like you mentioned. That’s the bulk of where these bills are coming from. But of course in public health, we know how important it is. I mean, we’ve essentially eradicated, or at least up until a few months ago, had eradicated polio from the United States. We’ve essentially eradicated measles mumps rubella, because of vaccines. Yet, our failure to continue with these regular immunization schedules could easily lead to these diseases making a comeback.
Zoe Rothblatt 07:15
And by the way, childhood vaccination rates just fell generally during COVID, just by the nature of being either in quarantine, or just people not really going into a medical facility because they didn’t want to risk getting sick. So I was looking at some of the numbers, childhood vaccination rates fell during the 2020 to 2021 school year and the equivalent of 35,000 kids not being up to date on their shots.
Steven Newmark 07:41
Yeah, I mean, that’s, that’s really scary to say the least. And I think like you said, some of it had to do with folks just physically not being present at doctors offices, and failing to miss the shots. And then once you miss one year, you start to say: “Well, I skipped last year, is it really that important?” and so on, and so forth. It’s why even folks like us continue to sound the alarm we talked about it earlier about getting flu shots.
Zoe Rothblatt 08:03
And it’s not just kids, adults play a role in this too. Fewer Americans said this year than last year that they’ll get their flu shot compared to the few years before. And this is different, of course, then the poll that we conducted in our community, our COVID-19 Patient Support Program, which found an overwhelming majority is getting their flu shot and plans to and talk to their doctor about it. But it’s interesting to put it in the context of general Americans saying, you know, we’re not going to get it.
Steven Newmark 08:31
Yeah, well, that’s not surprising, because as we know, we’re dealing with a lot of folks who have chronic conditions. And the imperative, I think, is higher, of course, for us to get our vaccines. But the scary thing is that when the general public doesn’t follow through and get their vaccines, the chance for community spread of the flu and other diseases is that much greater, which has a deleterious effect on us.
Zoe Rothblatt 08:51
So why don’t people trust and get the vaccines? What is going on? Do we have any answers or ways to combat that?
Steven Newmark 09:00
I don’t know the answer to that question. I don’t understand it. I don’t see many people who get on an airplane and think that they could fly a plane better than the pilots who are experts in flying. So I don’t understand where this lack of trust where scientists come from, and it’s not even a scientific thing. You know, we trust scientists to take us to the moon, right? So I don’t understand.
Zoe Rothblatt 09:19
Exactly. And by the way, you know, things that I’ve been hearing here haven’t been necessarily anti vaccine, but I think there’s a lot of confusion. People don’t know if they should be getting this updated booster, if they qualify for it. People haven’t really heard about it. And there just needs to be a larger campaign in general to say like this bivalent booster was approved or authorized for emergency use authorization. It’s recommended for basically everyone to get it at this point unless you recently had a shot or had COVID. And we just need more awareness on that because I’ve had a lot of family coming to me saying: “What’s the deal? What do I do” and they just don’t know. So there’s also that aspect to this.
Steven Newmark 10:01
Yeah, I think part of it perhaps is that a lot of the information that comes out in terms of vaccines, and particularly the COVID vaccines comes from the government. And there is such a culture that has developed over the last three decades of distrust in government generally. And there is almost this entire economy that thrives on bad mouthing government. There’s an entire ecosystem of podcasts, not our podcasts, but radio and other audio formats. There’s the media that thrive on constantly bashing anything that comes from government sources, including neutral government sources like the CDC. So when you’re hearing such invective coming on one side, it’s very difficult to combat and it feels as though the CDC and policymakers from the Biden administration on down have almost collectively decided not to engage fully with respect to the bivalent booster. It’s almost as if they put the information out, and they sort of hope it gets out. And if I may, I know I’m speaking a lot. I think it’s more important than ever, that we have advocates like us speak out. Folks who are trusted voices who have nothing to gain other than our own safety. We want us to be safe, we want our loved ones to be safe. And that’s where we come in. I think we need more folks like us talking about what you just said about the safety and efficacy of these vaccines.
Zoe Rothblatt 11:22
That’s it. At the end of the day, I saw some data that showed if 80% of eligible Americans got latest COVID boosters, as many as 90,000 lives could be saved. That’s incredible. That’s someone’s mom, someone’s brother, someone’s partner, it’s a loved one, you know, it’s a life.
Steven Newmark 11:40
Look, it’s easy to get caught up on Facebook and social media, they thrive on the quick hits. And seeing something that promotes skepticism is something that, unfortunately, we probably all know somebody who will go down these rabbit holes, but it’s incumbent upon us on a very personal level to talk to our families, friends, to be a little bit more vocal about the vaccines and be positive and explain how important it is to saving our lives and teaching folks almost on an individual level. Beyond that it’s incumbent upon us to teach policymakers and to combat some of this misinformation that is out there.
Zoe Rothblatt 12:15
And I think that a really good place to start is just by talking about why you get the vaccine and why it helps you sometimes these conversations can get heightened quickly. And I usually start by talking about what it does for my safety and my health and how that is important to me and those around me.
Steven Newmark 12:35
Excellent. All right. Well, this is great. So everyone listening has an important task in addition to getting the vaccine. Talk to everyone you know about the safety and efficacy of vaccines generally.
Zoe Rothblatt 12:44
Amen. Let’s do that. Let’s all commit to talking to at least one person about it. Well, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 12:54
Well, I learned in honor of World Osteoporosis Day that one in three women over the age of 50 will suffer from a broken bone due to osteoporosis.
Zoe Rothblatt 13:03
And I learned from you you know, you’ve been in the vaccine space for longer than I have and it was just important to hear from you about what’s happened over time and how this vaccine skepticism has grown and diminished.
Steven Newmark 13:17
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to The Health Advocates at GHLF.org. Or better yet, include a short video or audio clip
Zoe Rothblatt 13:28
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 13:33
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 13:38
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 13:57
I’m Steven Newmark. We’ll see you next time.
Narrator 14:02
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 4- COVID-19: As the Virus Wanes, Many Questions Remain
Nearly three years into the COVID-19 pandemic, the rollout of vaccines and therapies has reduced infections and hospitalizations across the globe, yet no one knows with certainty what’s just beyond the horizon. “Scientists believe that [COVID-19] will continue evolving to become better at escaping the human immune system, but researchers are uncertain about what future variants might look like,” says Steven Newmark, Director of Policy at GHLF.
Will there be new variants? Can we develop a vaccine that will protect against future variants? Why do some patients develop long COVID? In this episode, we address these questions and more.


COVID-19: As the Virus Wanes, Many Questions Remain
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
We know that immunocompromised people play a role in new variants, and this is because unfortunately, the immunocompromised body is like a good breeding ground for these variants. But we also don’t know the extent to which that occurs. Will the virus keep evolving? Will there be new variants? And how do immunocompromised people play a role in this?
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts, we have so many to choose from.
Zoe Rothblatt 00:57
We sure do and as a reminder, you can check all of our podcasts out at ghlf.org/listen. Check out our latest podcast Beacons for Better Health. On this podcast, you’ll hear from this year’s recipients of the first annual GHLF Beacons for Better Health Awards. And they’ll talk all about how they’re impacting patients lives worldwide.
Steven Newmark 01:20
Yes, I’m very excited for this show. It’s gonna be incredible to hear from these folks who really give an extraordinary amount for themselves and for patients.
Zoe Rothblatt 01:29
100%! I’m so excited too. Let’s start with a listener comment. Are you ready, Steven?
Steven Newmark 01:34
I am ready.
Zoe Rothblatt 01:35
This one came from Jane L. who wrote: “Love listening to this podcast on my way to work.”
Steven Newmark 01:40
Thank you, Jane. I love listening to podcasts on my way to work as well. And I’m glad that you’ve chosen ours on your commute.
Zoe Rothblatt 01:46
Yeah, thank you so much, Jane.
Steven Newmark 01:49
Well, today we’re going to talk about what we still don’t know about COVID. We’ve talked a bunch about what safety measures are being dropped, vaccine updates, and what is happening now. But there’s still a lot we have yet to learn.
Zoe Rothblatt 01:58
And first, we do have a few news updates. The first thing I want to share with our listeners is that I got my COVID booster shot. That’s the new bivalent shot that helps protect against Omicron.
Steven Newmark 02:09
Excellent, excellent, great work Zoe! I’m going to call you Ms. Bivalent from now on.
Zoe Rothblatt 02:14
I’ll take it!
Steven Newmark 02:14
How did it feel?
Zoe Rothblatt 02:15
Now I’m feeling like really relieved it’s done with and I’m going into this season with protection. I talked to my doctor about what’s best with timing, I was a bit nervous for the shot. And you know, we decided to do it within a few days of my flu shot so I only skipped my meds once. I’ll say the side effects were pretty mild for me, just tired and headachy, overall okay. You know, there was two things that stood out to me when I went to get my shot. All my other shots have been in the New York, New Jersey area, this was my first one in Tennessee. And it did feel a little different. The pharmacist was not wearing a mask, which made me a little nervous as I’m going in to get protection. I also did feel like it was a little risky of a situation. And I’ve heard from people in our community that they feel the same. So that was just something that was a bit different for me.
Steven Newmark 03:04
Yeah, you know, we’ve spoken about this before, about the masks coming off, and one of the places if nothing else, you would like to see masks continue are health settings, health care settings, and I consider pharmacies to certainly be health care settings. But the fact that the actual pharmacist who was administering the shot was not wearing a mask, that’s concerning. I’m beaten down.
Zoe Rothblatt 03:22
Well, I was in my mask, so I at least felt like I have some level of protection. And then the other thing, this was just more logistical, is that because I’m immunocompromised, I’ve got a bunch of shots. I had the three for the primary series then the booster, which is technically the fourth shot. And now this COVID Omicron booster was the fifth shot. There’s no room on my COVID card. She was like squeezing it in at the bottom and I’m just wondering what people in our community are supposed to do, like, do we get new cards? There’s not really any more room?
Steven Newmark 03:54
Yeah, I think what you’re supposed to do is, you’re supposed to get a second card. It’s how it’s technically supposed to work. I guess a few things. The first is it doesn’t really matter, the cards were there because at the beginning of the pandemic, there was this idea that the card itself would allow you to get into certain venues. I don’t know of any place on Earth that still uses that, number one. Number two, the few that do, to the extent that vaccines are still mandated in places, there are other ways of getting it that are almost easier if you will. And number three, I don’t know of any place that requires you to have five vaccines. So I guess from that vantage point, you’re okay. A few other things, you know, your record is still available electronically. And I know it can be daunting, but if you can get your electronic medical record, particularly what I always do, and I would encourage others to do this is I use my primary care doctor as the recipient of all of my medical records. No matter who I’m going to see I send everything to my primary care doctor so that I have one place that I can go to to get everything I need. And my primary care doctor has made it so easy on their portal, there’s actually a button that says ‘click here for your COVID records’ and you could print it out and it comes with a QR code and everything. So you know, if you ever needed something, I find that to be just by far the easiest way to prove your vaccination status. So I would encourage you and others similarly situated, regardless of whether you had no room on the COVID card, to try and get the information in electronic form.
Zoe Rothblatt 05:16
Okay, you just let us perfectly in our next bit of news, which is all about health records and digital access. So you know, a new federal rule under the 21st Century Cures Act says that health care organizations must give patients unfettered access to their full health records in digital format.
Steven Newmark 05:35
Yeah, the goal is to help patients get their data, and it’s up to the patient. It’s their data, and they can choose who to share it with and how to share it.
Zoe Rothblatt 05:42
When I first saw this, I kind of thought, don’t we have HIPAA? And doesn’t that allow for, you know, patients to ask for their records and turn it over? And as I thought about it more, I thought about, you know, when I’ve tried to get my records, there’s a lot of delays, sometimes they say, we’ll send it if you have a fax machine, I don’t have one of those. And I’m thinking like, you know, sometimes they’ll offer to send it to another provider. And I’m like, why can’t you send it to me? It’s all about me.
Steven Newmark 06:09
Yeah, absolutely. Because of HIPAA, actually, it had been a little difficult to send records electronically and hopefully, the 21st Century Cures Act will make it a simpler process to do so. Because clearly for getting hundreds or dozens of pages, you know, it’s simpler to get it electronically, rather than to try and obtain it, you know, either a hardcopy or sometimes as you said, they only do it by fax. I’ve also had providers my own personal experience, who will do it but they’ll charge you printing fees.
Zoe Rothblatt 06:34
That’s not cool. We already pay the copays, the coinsurance, deductibles, we don’t need to pay paper fees.
Steven Newmark 06:41
I know, I don’t even want it in a hardcopy Give it to me electronically. Well, and hopefully patient’s ability to get their data means that they can better understand their care, shop for services and, you know, participate in research without waiting for a clinician or a drug company to present them with an opportunity.
Zoe Rothblatt 06:55
Yeah, you know, for chronic disease, you often see a lot of specialists over the years. So it really does matter to have this access, even like you were just talking about with your primary care, the person that holds all your data, it’s really helpful to be able to, you know, move the different things from different specialists over to the right people at the right time.
Steven Newmark 07:12
Yeah, in additional news, many patients, unfortunately, are still unable to afford health care costs. There was a recent Commonwealth Fund survey, which was conducted this year between March 28 and July 4, that found that 43% of working-age adults were inadequately insured.
Zoe Rothblatt 07:29
Wow. 43%. But you know, what does that mean? They were inadequately insured?
Steven Newmark 07:34
Well, it means that they were either uninsured, which accounted for 9%. Or they had a gap in their coverage over the previous year, which was 11%, or they were insured all year, but were quote unquote, ‘underinsured’, which the Commonwealth Fund defines as having coverage that still doesn’t provide affordable access to health care. And that accounted for 23% of cases.
Zoe Rothblatt 07:54
You know, I believe it, it’s a lot to pay for your health. And when you have a chronic disease, and you’re faced, let’s say, with this underinsured scenario where you just simply can’t afford to pay the monthly bills for prescriptions, or you have an extra coming up, you haven’t met your deductible, it’s a huge copay. Things like that. It means that, you know, people are going to avoid getting the care they need, not fill their prescriptions on time and that can ultimately lead to long term health consequences, and also financial ones as well. It’s expensive to be chronically ill.
Steven Newmark 08:26
Yeah, absolutely. Absolutely. Moving on, the CDC is going to stop reporting daily cases of COVID and is instead moving to weekly cases.
Zoe Rothblatt 08:34
So yeah, this comes after two years of nearly constant daily updates. This feels like a big change for me.
Steven Newmark 08:42
It definitely is. It’s a sign of the times that we’re moving on from where we had been, which is a good sign, I suppose. The CDC said the weekly report are going to allow for more flexibility and will reduce the burden on state and local governments.
Zoe Rothblatt 08:54
It’s also similar to how the CDC covers the flu, which is typically on a weekly basis. So you know, that’s more comforting that we’re going in line with protocols for other diseases or viruses.
Steven Newmark 09:05
Yeah, absolutely. That’s a really good point. Yeah. So let’s turn to our topic of today. We’re almost at the three year mark, if you can believe it since the first case.
Zoe Rothblatt 09:14
Yeah, my heart is like heavy hearing that. It’s a big deal.
Steven Newmark 09:18
I know. It’s crazy. Well, there’s still a lot we don’t know. So first and foremost, we still don’t know exactly where the virus came from.
Zoe Rothblatt 09:24
True, yeah! We still don’t know that. We had an episode on that maybe a year ago now.
Steven Newmark 09:29
Yeah, we haven’t been able to confirm definitively that the virus came from the seafood market in Wuhan, China. There are peer reviewed papers on the theory, but we still don’t know key details like where in the market that happened or which animals were involved? What drove this? And the Chinese Communist Party is not allowing outside investigators in to try and solve that, you know, in order to better situate ourselves for future diseases.
Zoe Rothblatt 09:53
Yeah and the other theory that we haven’t I guess debunked or ruled out is the possibility that the virus escaped from a lab in China. And you know, when we think about why it’s important to know this, it’s important for your disease surveillance, monitoring and preventing other infectious diseases. We’ve seen monkey pox and polio in the news recently, and we really do want to have our public health measures in place to prevent outbreaks.
Steven Newmark 10:17
Yeah, I know. To me, it’s just it just boggles the mind that we can’t get in to investigate to learn what happened so that we can help better prepare ourselves for the future. I mean, this could happen again, if we don’t learn from it.
Zoe Rothblatt 10:29
The next thing we don’t know is, how is the virus evolving? And will there continue to be new variants?
Steven Newmark 10:36
Right. And, you know, scientists believe that it will continue evolving to become better at escaping the human immune system, but researchers are uncertain about what future variants might look like.
Zoe Rothblatt 10:46
And yeah, I mean, we know that immunocompromised people play a role in new variants. And this is because unfortunately, the immunocompromised body is like a good breeding ground for these variants. But we also don’t know the extent to which that occurs, which is, you know, there’s a few unknowns here. It’s like, will the virus keep evolving? Will there be new variants and how do immunocompromised people play a role in this, which is a bit scary for our community? We want to make sure that we’re staying safe.
Steven Newmark 11:14
Yeah, no, absolutely. Speaking of variants, just one interesting note: over 90%, I think we’re… I think it’s at 92%, even higher than that, of cases are still of the Omicron B4 and B5 variety in the United States. So it’s been quite a while that we haven’t seen a mutation to another variant, which is even more reason, by the way, why folks should follow Zoe’s lead and get the bivalent booster, which is specifically targeted for these variants.
Zoe Rothblatt 11:38
Yeah, you know, that kind of leads into the next unknown, where it’s like, can we develop a vaccine for future variants? You know, we kind of have been like a step behind the virus. Now, it feels like based on what you were just saying, it feels like, you know, we’re at a good spot with the bivalent vaccine for Omicron, because those are the dominant strains still, but it almost feels like we’ve been chasing it a step behind. So in the future, could we be able to develop a vaccine ahead of time that will predict a new variant, kind of like how we do for the flu each year?
Steven Newmark 12:09
Yeah, there is a nasal spray vaccine in the pipeline, which experts hope will work in the respiratory tract more, although we’re not certain about that. Experts say we should expect to get a COVID shot every year, like the flu shot, which is adapted each year for the best guess on the variant. So we’ll see.
Zoe Rothblatt 12:25
Also, on that topic, our community is really interested in measuring the level of antibodies and seeing you know, what amount is a good amount that you’re protected? I know, antibodies are just one part of the picture. There’s also the T cell response. So it’s like a little bit hard to get a definitive yes or no. But you know, as we develop vaccines and look at protection, I know our community wants more research on the level of antibodies needed to stay safe.
Steven Newmark 12:51
It would be incredible almost to have an at-home kit to be able to test yourself, not having to go to a doctor. Just test yourself and when your antibodies hit a certain level, you know it’s time for another shot. Or conversely, if they’re at a certain level, you may not need another vaccine at that moment, which is good to know as well.
Zoe Rothblatt 13:08
So you have at-home kits. I’m still loving the at-home test, like whenever I feel like I have like a little something or I was in a crowded area. I just go to the bathroom take out from the closet, my at-home kit, and I feel so good about it!
Steven Newmark 13:23
Yeah, I know we’re getting off topic but I also wonder what it would take to develop an at-home kit for flu as well. Or a two and one.
Zoe Rothblatt 13:31
Two, and one would be great.
Steven Newmark 13:32
Yeah, just to know. Another one we’re still looking into is long COVID. According to the CDC, one in five folks with COVID go on to develop long COVID.
Zoe Rothblatt 13:42
One in five is a huge amount. First of all, we really don’t know how long, long COVID is, you know, is it a chronic disease for the rest of your life? Is it symptoms for a few months? It’s really different for everyone it seems like right now. We don’t know what’s driving it and we just don’t know too much about it. And to think that one in five are getting symptoms that lasts longer is a tremendous amount of people that are in pain or you know, just struggling day to day.
Steven Newmark 14:07
Yeah. And what does it mean for the immunocompromised community?
Zoe Rothblatt 14:11
Sure, if you already have conditions and underlying conditions, and now you have this other thing on top, it’s like probably really, really challenging to deal with and we need to answer some of these questions in order to get effective treatments.
Steven Newmark 14:24
Absolutely. Another question is why does the severity differ by age and by person? When can high risk individuals return to a normal life?
Zoe Rothblatt 14:33
It’s true, you know, we’ve seen with COVID, the younger the patient, the less the risk. You know, just given like a healthy population, kids have been spared from, you know, a lot of the brutal severe infections, but the weird thing is that people with similar health profiles can have a different severity. I mean, I think we saw this really in the early days of COVID. It was like so random who would end up in the hospital, now we have vaccines which prevent against severe illness, so it isn’t maybe as obvious, but it was just like there was no pattern or reason to who got the severe illness it felt like.
Steven Newmark 15:06
Yeah, no, absolutely. You know, people with similar health profiles have different severity levels. Also, when we talk about returning to normal life, that means something different to different people. And if you’re immunocompromised, you, of course want to be sure to stay up to date on your vaccines and preventive measures if recommended.
Zoe Rothblatt 15:21
Yeah, you know, it’s true. There’s no timeline on when COVID’s over. We talked about this at length, and you know, we’ll continue talking about it because it matters to our community and knowing your risks and talking to your doctor is just such an important piece of that timeline as we all figure it out together. All right Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 15:41
Well, I learned that despite us being three years in, there’s still so much we don’t know about COVID.
Zoe Rothblatt 15:47
And Steven, I learned from you about the new rule that’s going to help patients access their electronic health records digitally.
Steven Newmark 15:55
Excellent. Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:06
And who knows whatever you’re sharing may be included in our listener feedback portion of future episodes.
Steven Newmark 16:11
Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 16:16
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, give us a rating and write a review on Apple podcasts and hit that subscribe button, wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 16:33
I’m Steven Newmark. We’ll see you next time.
Narrator 16:39
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 3- “Patient Stories Move The Needle” – Nathaniel Brown from the Chronic Disease Coalition
Chronic diseases affect the health and quality of life of millions of Americans, with the Centers for Disease Control and Prevention (CDC) reporting that six in 10 adults in the U.S. have a chronic disease. Since the complex health care system continues to pose challenges even for the most informed patients living with a chronic disease, the need for advocacy is vital to taking a stand against unfair or harmful practices.
In this episode, Nathaniel Brown, Director of Advocacy at the Chronic Disease Coalition, shares his experience advocating on health care issues before state legislatures and discusses why patient advocacy is key to ensuring better outcomes for all people with chronic disease.
“What our ambassadors do is they connect with their legislators, whether at the state or federal level, and then we’re here to support them… [and to] help them prepare for the meeting, follow up, set the meeting, that kind of thing… And so we really try and make it an easy process for them and an effective process, too, because when it comes to health care advocacy patients, patient stories is really what moves the needle,” says Nathaniel Brown.


“Patient Stories Move The Needle” - Nathaniel Brown from the Chronic Disease Coalition
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Nathaniel Brown 00:08
Progress happens in inches, but each year it does feel like we see progress. And that’s kind of the beauty of working at the state level. Things move a little bit quicker and policy impacts happen a little bit more immediately.
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts, we have so many to choose from!
Zoe Rothblatt 00:49
We sure do. And as a reminder to our listeners, you can check them all out at ghlf.org/listen. This week, we’ll give a shout-out to Talking Head Pain hosted by our colleague Joe Coe. One of the latest episodes features a conversation with Hannah Frost, and Joe and Hannah really just discuss power climbing was migraine, the effect migraine had on Hannah’s career and how she was able to come back to the sport with the help of the community.
Steven Newmark 01:15
Power climbing! Very cool!
Zoe Rothblatt 01:16
Very cool. All right, let’s start with a listener comment. Ready, Steven?
Steven Newmark 01:20
I am ready.
Zoe Rothblatt 01:21
This one is from Rachel M. who wrote: “Relatable show! Thank you.”
Steven Newmark 01:24
Thanks, Rachel. And thanks for listening. We encourage everyone to be sure to tell a friend and hit that subscribe button.
Zoe Rothblatt 01:30
This week, we have a special guest with us Nathaniel Brown, who’s the Director of Advocacy with the Chronic Disease Coalition, and he spoke with us about his experience advocating on healthcare issues before state legislatures.
Steven Newmark 01:43
Yeah, we had a really great conversation with him about the policies he focuses on with the Chronic Disease Coalition and the importance of patient advocacy. But first, we have some news updates.
Zoe Rothblatt 01:51
So our first news update Steven, I know you love these, we have the Patient Support Program quick poll results.
Steven Newmark 01:58
I love it.
Zoe Rothblatt 01:58
So this time we had asked about the flu vaccine and people’s plan to get that protection. Are you ready for this? Yes. 62% have spoken to their doctor about getting the flu shot and of those 97% said their doctor recommended getting the flu vaccine.
Steven Newmark 02:14
I am curious who those 3% are. What is up with that?
Zoe Rothblatt 02:18
Well, maybe they’ve had an allergic reaction or something. Right. Fair enough. Fair enough. But yeah, I got my flu shot yesterday, and I have the sore arm and I’m a little fatigued, but mostly really optimistic about the protection that I now have.
Steven Newmark 02:33
Great! Good for you. I will be getting mine shortly as well.
Zoe Rothblatt 02:36
Oh, nice. And then, just rounding up the poll: 94% said they do usually get their flu shot and 71% plan to get it, and 23% have already got it. So it looks like our community is getting that protection this flu season.
Steven Newmark 02:50
Excellent. In other news, Medicare Part B premiums are set to actually decrease. You don’t hear that too often in the health care world, of premiums going down. The Biden administration announced that Medicare Part B premiums will decrease in 2023, making it the first time that this cost has been lowered in more than a decade.
Zoe Rothblatt 03:08
More than a decade, that’s really amazing, especially because I know in 2022, Medicare B premiums rose by a decent amount, I think around 14%. So you know to have that come down in the next year, especially if it hasn’t in more than a decade, is really promising.
Steven Newmark 03:23
Yeah, I don’t want to get too excited. They’re being lowered by 3% or $5.20 per month, going from $170.10 a month to $164.90 per month, and the annual deductible will also fall from $233 to $226. But again, these are not eye popping numbers, but going down is always better than going up.
Zoe Rothblatt 03:45
Yeah, I think that every dollar counts, especially when you live with a chronic illness like our community does. It’s really expensive to continuously pay for it. So you know, at least this is something and of course we always hope for more because everyone should have access to affordable health care.
Steven Newmark 04:01
Absolutely. Every dollar does count. You’re right about that.
Zoe Rothblatt 04:03
So you know our last piece of news here: the CDC says masks are no longer required in some, I’ll emphasize that some hospital and nursing homes. So basically they said that facilities and areas without high transmission can decide for themselves whether to require, you know, everyone, doctors, patients and visitors to wear masks or not.
Steven Newmark 04:24
Yeah, the agency now has exceptions for masking and I’ll put this in quotes “remains recommended”. These include situations like during an outbreak among patients or when caring for patients who are moderately to severely immunocompromised.
Zoe Rothblatt 04:37
You know, this actually reminds me of a few months ago. We were talking about how there was some uproar in our community when patients came into the hospitals with N95s and they were asked to put on a surgical mask handed out at the door instead, and they said: “why are you requiring me to wear a less protective mask, I don’t really feel safe in this health care setting” and the quote you just said when caring for moderately or severely immunocompromised patients, that says masks are required but sometimes it’s not obvious if that person is or isn’t. So someone may walk in the room without one or, you know, they may go to the desk. And it’s not that it’s embarrassing to ask but sometimes it’s just so exhausting to continuously advocate for yourself like that.
Steven Newmark 05:17
Yeah, I can’t imagine any well respected health care facility, doctor’s office included, and certainly a hospital or nursing home, that would not require it. It just doesn’t make any sense, particularly as we enter flu season. You know, we’ve spoken about this before, it seems like this should be the norm going forward, like: “hey, let’s keep viruses at bay”. And you know, COVID itself is still out there. It’s even more virulent than flu is. And as I said, now, you’re adding layering on top of that, we’re entering flu season. I just… it bothers my mind that forgetting about what the CDC’s guidance is, or what local regulations say, how any health care facility would not require it, I can’t understand it.
Zoe Rothblatt 05:56
For sure. I actually saw my rheumatologist yesterday, and often you have to change into that gown when you’re at the doctor, and typically they say what clothing garments stay on, and she said: “And your mask remains on.” And I was really relieved that she had pointed that out. And now I know that she points that out to her patients, and I just felt so comforted by that, there wasn’t a question of you know, what the expectation is. It was “keep your mask on” and their signs all over “keep your mask on”. And I hope that continues. Because as we’ve seen with guidance, you know, when it’s lessened people kind of are quick to jump on it and throw it out the door, and it’s hard to say “some” and not “all” require masks. So this makes me a little nervous.
Steven Newmark 06:34
Yeah, look, there are certain places in this world that I want a little heightened sense of security when it comes to keeping us safe from viruses. Hospitals, for sure, I want masks, I want people in restaurants washing their hands a heck of a lot more than I wash my hands. And that’s just the way it should be in my humble opinion.
Zoe Rothblatt 06:52
Amen to that! I totally agree. Patients should feel comfortable accessing the care that they need without fear of contracting another virus because basic precautions aren’t being met.
Steven Newmark 07:02
Well, 73% of the country, as of our recording, is still having high rates of transmission. So you should expect to still see masks in your local health facilities.
Zoe Rothblatt 07:11
I mean, I would say that’s good news, we expect to see masks but not great news to hear that there’s high rates of transmission. So a little bittersweet hearing that but I hope to still see the masks.
Steven Newmark 07:22
Well, like we mentioned, we spoke with our friend Nathaniel about patient advocacy from the Chronic Disease Coalition.
Zoe Rothblatt 07:29
And he’s here today to talk about his experience advocating on health care issues before state legislatures. Welcome, Nathaniel!
Nathaniel Brown 07:37
Hey, thank you very much for having me.
Zoe Rothblatt 07:39
Well, why don’t you start by introducing yourself and you know, the Chronic Disease Coalition and your role there.
Nathaniel Brown 07:45
So I am the Director of Advocacy for the Chronic Disease Coalition. We’re a nationwide nonprofit focused on education and advocacy in the health care space, specifically for Americans with chronic illness. We represent people with, you know, from multiple sclerosis, to cancer to arthritis to psoriasis, we’re a big tent organization. You know, something like half of Americans are living with a chronic disease and so we focus on the issues that are important to them and their families, and help advocate and shape public policy to their benefit. So my role as the Director of Advocacy is really to keep an eye on state legislatures, in all 50 states and Congress to see what is currently being debated, where we can plug in, where we can help our patient advocate for themselves, and support them in their own advocacy journeys, and really just help raise their voices in the public process.
Zoe Rothblatt 08:37
That’s awesome and such important work. You mentioned that you follow the state legislatures and what’s going on. Talk to me about some of the health care issues that are most important to you and your patient community.
Nathaniel Brown 08:49
Absolutely. Every year, we undergo a very comprehensive policy development process where we bring in our patient advocates, we bring in our board members and our members and partners in each of our areas. And so what comes out of that is is a policy platform, and this year, we are reforming step therapy and prior authorization, expanding telehealth when it makes sense for the patient and their provider, and then the Medigap issue as well. We have really seen a need increase in several states for access to Medicare supplemental insurance. And so that’s been sort of our top tier issues. But we also work very heavily to pass living donor protections, to establish chronic kidney and rare disease task forces at the state level so that the patient voices is sure to be represented and is codified. And we also weave in equity work and issues that are important, you know, to all of our patients that kind of weave into each of those separate policy buckets.
Zoe Rothblatt 09:48
You mentioned step therapy, which is also a big one for us. And for those who don’t know, this is when an insurance company essentially denies your medication and say that you have to try a different one and fail on that first before you can get the one originally prescribed by your doctor. This is an issue we’ve been fighting for for years. There’s also federal legislation that we’ve been trying to champion. And I’m wondering, from your perspective, what types of progress have you seen over the years with either step therapy or an issue like that, where it feels like we’re constantly trying to raise our voices, and maybe it’s not moving forward so quickly?
Nathaniel Brown 10:21
Yeah. It can be frustrating for sure. Um, as you know, progress happens in inches. But each year, it does feel like we see progress. And that’s kind of the beauty of working at the state level, things move a little bit quicker and policy impacts happen a little bit more immediately. This year, we’ve seen progress on step therapy in Florida. Massachusetts is working on a very comprehensive bill. Colorado passed a comprehensive bill. And it’s always a little bit of a give and take because step therapy reform is common sense to patients and advocates like us, but it’s not necessarily a popular notion. And so we work in different levels. So that could look… so when you’re talking about step therapy reform that could go into certain buckets, right? So we could be working to pass, you know, peer reviews, or we could ensure that there’s adequate notice time so that when an insurance company is going to force a patient to fail first on another medication they know about it beforehand. And so there’s a lot of different avenues to make progress and sort of chip away at this big issue. And like I said, each state is different. I think that there’s a very strong effort at the federal level, which we’re also engaged in to get a nationwide comprehensive legislation passed. But yeah, progress happens in inches, for sure.
Zoe Rothblatt 11:32
And, you know, how can patients get involved in that progress? What kind of work do you do with people living with chronic disease to help raise their voice?
Nathaniel Brown 11:40
Yeah, so that’s really our North Star at the Chronic Disease Coalition. You know, our mission is to help patients advocate for themselves and to support them on that journey. And we have a very active ambassador program, with ambassadors in most states. And when we do that policy development that I mentioned, and when I’m talking to them, almost always, they have experienced with step therapy. Because their condition is chronic, it’s going to be expensive to manage and so they’re very concerned that they’re going to be forced to try and fail on a drug that their doctor hasn’t prescribed. And so the message of kind of protecting that patient provider relationship is really what guides us and is an easy one for patient ambassadors to communicate to their legislators. And so what our ambassadors do is they connect with their legislators, whether at the state or federal level, and then we’re here to support them, you know, help them prepare for the meeting, follow up, set the meeting, that kind of thing. Basically, to make it as easy as possible, because right, they have day jobs. This is what we’re paid to do. And so we really try and make it an easy process for them. And an effective process too, because when it comes to healthcare advocacy, patients… patient stories is really what moves the needle. And I’m sure you know, this. I mean, when a patient comes in and says, you know, I missed Xmonths of treatment on… that I knew worked, but I had to switch jobs, and I switched insurance plans, and now I’m back where I started, and I’m having, you know, health problems because of that, that’s a lot more impactful than sort of the legislative lobbying advocacy work that we do. So that’s why we try and connect patients with decision makers and move the needle that way.
Zoe Rothblatt 13:13
And what types of calls to action do you send out to patients, like if patients are looking to get involved, what kinds of things could they get involved with?
Nathaniel Brown 13:21
Yeah, so a big part of my job is, you know, keeping eyes and ears out for legislation that could impact patients, but when we send out a call to action it’s typically around a bill that’s got some legs, it’s moving in the legislature. We don’t do a lot of opposition work, I think, though, that’s kind of why I love this job because the legislation we support is typically fairly bipartisan, and it’s positive. And so we’ll send out a call to action, asking our advocates to connect with their legislators, customizing messages, and doing that kind of thing. That’s obviously sort of the surface level advocacy work, we exist to help them along that sort of advocacy ladder. And so that’s where our ambassadors come in, you know, we set up meetings between them and their legislator, help them you know, prepare to testify, and then kind of work our way up. And so there’s sort of a suite of options in terms of patient engagement, but our calls to action are kind of where to start.
Zoe Rothblatt 14:13
And what is your advice for someone looking to get started to, you know, raise their voice and advocate but is maybe a little nervous. You know, speaking to a legislator can sound quite intimidating. You just mentioned making things easy to understand, policy is complicated. What’s your advice for someone looking to get into that?
Nathaniel Brown 14:29
Yeah, you know, beyond the obvious, right? Go to our website and sign up for our newsletter, you know, follow us on social media, I would say, you know, just don’t be afraid of it. Because I meet with ambassadors and with legislators frequently, and I can tell you, I’ve never seen a legislator, be aggressive or mean or anything like that towards a patient who is sharing their story. They are called the public service. They want to represent their constituents, but they don’t have all the answers and they don’t have all the stories and patients provide that and they really have an opportunity: find your legislator and ask for a 15 minute meeting just to let them know you’re a constituent. You live with X chronic disease, and you care about positive health care policy. That’s that’s really all it needs to be. And I think that there’s no reason to be intimidated by an elected official. They’re there to serve.
Zoe Rothblatt 15:18
Well. Thank you. And thank you for joining us on The Health Advocates.
Nathaniel Brown 15:21
Yeah. And thank you, I really believe in this work. As I know you both do, it’s really important work. And I’m blessed to do it.
Steven Newmark 15:28
Thank you, Nathaniel. Well, that was a great discussion.
Zoe Rothblatt 15:30
Yeah, it’s always great to hear what our peers and colleagues around the country are doing to help people living with chronic disease.
Steven Newmark 15:37
Absolutely.
Zoe Rothblatt 15:39
Well, Steven, that brings us to the close of our show, what did you learn today?
Steven Newmark 15:42
Well, I, you know, I’ll just say, I really learned, you know, once again, the importance of having different groups and different organizations to maximize our numbers, because when patients come together, we really are more powerful. And so it was great. It was a great discussion,
Zoe Rothblatt 15:56
And I learned from you that some of the premiums and health care costs and Medicare Part B are coming down. And while it may be a small change, incremental change does matter.
Steven Newmark 16:07
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:18
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 16:22
Also email us if you want to subscribe to our weekly newsletter.
Zoe Rothblatt 16:27
Well, everyone thanks for listening to The Health Advocates. A podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and definitely let your friends and family know about us. I’m Zoe Rothblatt.
Steven Newmark 16:41
I’m Steven Newmark. We’ll see you next time.
Narrator 16:46
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 2- It’s Complicated: Inflammatory Bowel Disease Diagnosis and Treatment
The prevalence of inflammatory bowel disease (IBD) has steadily risen over the past two decades. IBD, which includes Crohn’s disease and ulcerative colitis, is difficult to diagnose because symptoms can be similar to those of other conditions and vary from person to person. In this episode, Dr. Neilanjan Nandi, Associate Professor of Clinical Medicine at Penn Medicine, tells us how he advocates for patients and discusses the importance of reducing disparities, especially when it comes to IBD.
“It’s all about the patient. It’s not about the team; it’s about the patient, and the team serves the patient. This is the standard of care. And if you don’t elevate that patient’s voice, if you’re not listening to that patient’s voice, then it doesn’t matter if you have the greatest treatment. The treatment only matters if the patient tells you that everything that’s impacting them by IBD gets better,” says Dr. Nandi.


It’s Complicated: Inflammatory Bowel Disease Diagnosis and Treatment
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Neilanjan Nandi 00:06
At the end of the day, it’s all about the patient. That’s what medicine is about. It’s not about the team, it’s about the patient. And if you don’t elevate that patient’s voice, if you’re not listening to that patient’s voice, then it doesn’t matter if you have the greatest treatment. The treatment only matters if the patient tells you that everything that’s impacting them by IBD gets better.
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 healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from!
Zoe Rothblatt 00:58
We sure do. As a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout-out to Healthcare Matters. Our colleagues, Conner and Robert do a deeper dive on policy issues and they are back for season three. So definitely check it out!
Steven Newmark 01:14
Excellent. I know I will be checking it out for sure.
Zoe Rothblatt 01:17
For sure. And let’s check out a listener comment. Are you ready Steven?
Steven Newmark 01:20
I am ready.
Zoe Rothblatt 01:21
This one is from Teresa K., who wrote: “You guys do such a great job at breaking down the weekly news,”
Steven Newmark 01:27
Thank you, Teresa. We do what we can and we’ll continue doing it as long as you keep listening!
Zoe Rothblatt 01:32
Thank you so much. Okay, Steven, this week, I’m really excited for you to hear the interview I had with Dr. Neil Nandi. He’s a gastroenterologist specializing in inflammatory bowel disease. And I just had a really wonderful conversation with him about how he advocates for patients, how patients are partner in care and the importance of reducing disparities, especially when it comes to IBD. So I’m really excited for you and our listeners to hear it!
Steven Newmark 01:58
I’m excited too, as someone who’s gone through the IBD patient journey. I’m excited to hear what Dr. Nandi says.
Zoe Rothblatt 02:05
Awesome. So shall we dive into the news?
Steven Newmark 02:07
Absolutely. Let’s do it.
Zoe Rothblatt 02:08
Okay, well, this first bit of news is causing a bit of uproar. President Biden said that the pandemic is over. What are your thoughts here?
Steven Newmark 02:16
That’s right. So earlier this week, on 60 Minutes, President Biden said the pandemic is over. To be fair, the full statement was: “The pandemic is over… we still have a problem with COVID, we’re still doing a lot of work on it. But the pandemic is over.” Of course, as many have pointed out, 400 people a day are still dying of COVID. That certainly doesn’t feel like the end of a pandemic.
Zoe Rothblatt 02:36
And also what we pointed out in our last episode, we sort of just did a recap of the landscape of what’s going on and whether or not it feels like, you know, COVID is still a threat. I think the consensus you and I came to is that it is. Multiple times a day, we’re thinking about it, planning around it. You know, it really is a big part of our life. I know, after this statement was said by the President, so many people in our community started, you know, direct messaging us on social media saying: “Have you heard about this? You know, we don’t feel safe. This is a bit scary for us to hear someone in a leadership position declare it over, we’re still feeling left behind in general. And this is kind of making it worse for us.”
Steven Newmark 03:15
Yeah, no, absolutely. And I would agree with that sentiment. Just from a political calculation, when the President says that the pandemic is over, that is going to make it hard for that President to then ask for funding to help deal with COVID in the future. So that is problematic. But getting back to the idea of: Is the pandemic over? When is the pandemic going to be over? I mean, certainly in March 2020, that was the first question: When is this gonna be over? When is this gonna be over? And it just kept hitting us: When is this gonna be over? And I feel as though we went through several stages. In the early days, there was this vision of it being over, oh, we’re all gonna go on lockdown. And eventually it will go away.
Zoe Rothblatt 03:51
Right, two weeks to flatten the curve!
Steven Newmark 03:53
Right! Flatten the curve, remember that? Oh, boy! There was a phase where we thought: well, if enough people get vaccinated, we still might be able to get to herd immunity and essentially kind of stop the virus from from spreading too much. And that might be the end of the pandemic. Then that became impossible. So we sort of got this next phase where we believe that the virus could circulate. But we sort of thought maybe it’ll be like other coronaviruses that cause colds or you know, or something, even the flu. However, I feel as though we’ve reached this situation where COVID is actually worse than the flu. It’s not like, you know, sometimes we joke around here and say it’s like a second flu, but it is worse. I mean, 400 deaths a day for COVID is not akin to the flu.
Zoe Rothblatt 04:36
Yeah, so I actually, you know, thinking about that. I think we’re in the same line of thought because I looked up what are annual deaths in the US for a number of things, and you know, when you look at COVID, there’s been 1 million deaths just this year.
Steven Newmark 04:49
Right.
Zoe Rothblatt 04:49
And the flu over the past couple of years, data from the CDC shows that we expect 12,000 to 52,000 deaths annually from the flu. So that’s quite a difference, that’s not comparable. Oh, yeah. And when you think about a few other things that are really prevalent in our life, we get in a car every day. So security-wise, how many car accidents are happening? The CDC says less than 40,000. You know, gun control has been a really big conversation. How many, you know, gun related deaths are there? Less than 40,000. Cancer, around 600,000 each year. When you think that COVID is a million just this past year, it really is still a looming issue.
Steven Newmark 05:26
Yeah, I also was looking up some numbers. And there was an estimate that Omicron over the past several months has infected 80% of the U.S. population. So by contrast, I was looking at this, the flu sickens an estimated 10 to 20% of Americans annually.
Zoe Rothblatt 05:42
That’s a big difference, like from 80, to 10 to 20 percent.
Steven Newmark 05:46
Yeah, in a really bad year, the flu could infect as many as 50%. And going forward, there’s a hope that COVID would get to 50%. But certainly there’s a disparity because one, for flu, it’s at the very high end, whereas for COVID, that would be at the very low end.
Zoe Rothblatt 06:00
So yeah, let’s talk about that for a minute. Flu is, I guess, kind of what you would call endemic in a public health term. You know, it’s disease that’s usually present in the community, and it’s not necessarily desired. But it’s like, that’s the observed level: we expect this amount of flu each year. And, you know, I was wondering, you know, is COVID endemic? Are we at that level? And it’s kind of interesting, because when you look that up, it’s… experts say, you know, there’s no accepted metrics, or defined international rules that tell us when it gets to that point.
Steven Newmark 06:32
Yeah, I don’t have an answer. So let’s take it out of public health and academia. There’s just… when there’s a feeling of normalcy with COVID, if you will, I think that’s when the pandemic is over, at least the official pandemic, and you’re down to an endemic situation. And I think certainly that feeling is widespread, whether you and I share that feeling, and others in the chronically ill community share that feeling. That’s certainly the prevalent feeling in the world. Now, I think that we’re aware of COVID. Someone like myself still wears an N95 mask when I’m indoors with people I don’t know, you know, in a supermarket, or if I’m traveling on public transportation or airlines. A lot of others don’t. But my point is, it hasn’t stopped me, it hasn’t curtailed me from doing much of anything lately.
Zoe Rothblatt 07:16
Yeah, I would agree with that. And, you know, that just got me thinking, as you know, were The Health Advocates and people were upset by this statement. So what can you do? You can always call your local elected officials and talk to them about where you feel safe? or where not, and what’s going on with COVID and ask for more awareness and precautions around it.
Steven Newmark 07:36
Yeah, absolutely. I think that, again, I know that this depends where you live, but I’ve been flying recently, very few folks have masks. But I feel as though it’s totally socially acceptable for me to be wearing a mask, you know. And so I think that the more we continue to allow policy makers, people in certain positions to understand that the pandemic or endemic, whatever we want to call it, is continuing for folks who are chronically ill, the more folks that know that the better.
Zoe Rothblatt 08:02
100%. And I think like a lot of this is touching on the mental health aspect. And another interesting piece of news, I saw a health panel recommends that U.S. adults forget routine anxiety screening. Yeah, so this is the first time the U.S. Preventive Services Task Force has recommended anxiety screening and primary care for adults without symptoms, and the proposal’s open for public comment until later in October. So you know, it’s not an official rule yet, but are expected that it should become one.
Steven Newmark 08:34
What does that mean: anxiety screening and primary care. Does that mean, when you have a well visit with your primary care doctor, there’s a screening set of questions that they ask or…
Zoe Rothblatt 08:44
That’s what would assume, just like how, I guess you know, you screen for other diseases in your primary care, you know, you get bloodwork you check your cholesterol, diabetes, like blood sugar, and things like that. Now, I would assume there’s also a mental component where they ask certain questions, and then are able to refer you to the appropriate care.
Steven Newmark 09:02
Yeah, absolutely. I would advocate for that, regardless of what the U.S. Preventive Services Task Force says. I don’t see any downside to discussing that with your primary care physician.
Zoe Rothblatt 09:13
I think that’s actually an important point. Like sometimes it’s really hard to bring things up like mental health, and especially in a doctor visit, that could only be like 10 minutes. And sometimes you don’t even get the opportunity to speak like any of your talking points, let alone to bring up something like a little emotional. It helps to break that ice if the provider starts that conversation.
Steven Newmark 09:31
Yeah, I would say one other thing. It also breaks the ice if there actually is a recommendation from something like this, or you see a news article mentioning it. It’s definitely an icebreaker, or: Hey, I saw this news article and XYZ. As a side note, I saw a news article about a cure for baldness that dermatologists are using and I’m like: well now I can bring that up with my dermatologist!
Zoe Rothblatt 09:49
Well, we’re all about shared decision making. There’s so many times I’ve like printed out stuff and brought it to my doctor and talked about it. Okay, Steven that wraps up our news segment and like I mentioned, I spoke with Dr. Nandi, who is an academic gastroenterologist specializing in inflammatory bowel disease. And he’s here today to talk to us about how he advocates for patients and the importance of minimizing disparities in IBD care. Welcome to The Health Advocates!
Dr. Neilanjan Nandi 10:15
Thanks for having me, Zoe, it’s a pleasure to be on!
Zoe Rothblatt 10:18
Thank you so much for joining us. Would you like to kick it off by introducing yourself and give a snapshot of what you do and things you’re involved in?
Dr. Neilanjan Nandi 10:26
Sure. My name is Neil Nandi. I’m a physician specializing in inflammatory bowel disease, the care of Crohn’s disease and ulcerative colitis at the University of Pennsylvania. A lot of my work is in physician awareness and education, and also patient health advocacy in the IBD space. I am a proud member of the Crohn’s and Colitis Foundation and the United Ostomy Associations of America. And in those organizations, I’ve been very blessed to conduct a lot of patient and clinician directed education. And most recently, I’ve been focusing on raising awareness about inflammatory bowel disease, which is on the rise in South Asian patients of descent.
Zoe Rothblatt 11:02
So tell me about that. It’s on the rise. Was it always there? And we just didn’t know about it? Or is it really, you know, on the rise recently? What’s going on there?
Dr. Neilanjan Nandi 11:11
Yeah, you know, this is a fascinating story, actually, my father had Crohn’s, and that was in the 1970s, early 1970s. And at that time, his inflammation, the physicians here in the US were like, your people don’t get Crohn’s. What are you talking about? But ultimately, he was diagnosed with that was response to steroids only, of course. And what we’ve seen decade after decade, where IBD was once not very prevalent in South Asia itself, we’ve seen increasing prevalence of Crohn’s and ulcerative colitis in South Asia and in descendants of South Asian immigrants across the globe. So we see this increase. And it’s, South Asians, and it’s also pretty much other ethnic groups, we’re seeing an increase as well. And we don’t know why. But we believe there’s an environmental trigger that’s potentiating this. We don’t think that it’s over our better diagnosis. We don’t think – certainly that they were being missed. But we think there’s an environmental trigger, leading to an increased prevalence.
Zoe Rothblatt 12:07
And if this is a group that, you know, historically hasn’t been diagnosed with IBD. And now is, what does that mean for you know, diagnosis rates, access to treatment, things like that? Are our people getting the care that they need?
Dr. Neilanjan Nandi 12:19
Well, in short, the answer is no. Now the ramifications of getting a chronic illness diagnosis are multifold. Right? Not just the physical and emotional but the mental and then also the cultural stigma that one individually perceives, that one the family unit perceives, and fears, right, because it’s stigmatized. When it comes to South Asian culture, and this is not unique, just to South Asians, but it’s a particularly severe impact it can have, which is negative. Meaning if you have Crohn’s or colitis or gosh forbid, you need surgery, or diverting ostomy for perianal fistulizing disease, right? Now it affects one’s self esteem, but also marriage ability. How others may perceive you in marriage, in terms of not just finding a partner, but also childbearing, you know, or fathering a child, right, depending on your role? So the cultural aspect can also impact what treatments you might accept, you know, not just accepting the disease status, true, but whether you would accept a traditional Western med versus a complementary alternative medical therapy, like Ayurvedic medicine or herbals or other supplementations. So lots of different ramifications there that inhibit acceptance and prevent early treatment, early access.
Zoe Rothblatt 13:30
And what kinds of things do you tell your patients when they come to with these concerns? I mean, if they even do at all, it’s obviously very emotional subject to bring up and sometimes challenging, but how do you help patients advocate for themselves in their everyday life?
Dr. Neilanjan Nandi 13:46
Yeah, so honestly, even with South Asians, my message is true that regardless of your skin color, ethnic background, you know; one is you should always, you know, have some faith in your doctor, but that faith has to be earned. And if you don’t feel that that is happening, where your physician or nurse practitioner, or PA is going above and beyond to educate you, teach you, help you understand why decisions are being made, then there’s an educational gap there. So I always say, arm yourself with education, learn, read, and ask questions. I think patients more than ever have to feel empowered, that it is okay and right to ask questions. You should trust your clinician, but that is learning. And the way you have the clinician earn your trust as a patient is ask the right questions and be satisfied with the time and clarity of that explanation they take in making it to you. And if you don’t have that, then there’s something awry in your care. Now finding the right source of education. That can be a very challenging matter with all the misinformation there is out there. Right?
Zoe Rothblatt 14:48
Yeah, it’s really hard navigating a new diagnosis and going to Google and just being bombarded with information.
Dr. Neilanjan Nandi 14:56
That’s right. You know, so that’s why, you know, I think we recognize more than ever that with social media being an another media distribution outlet, right, we had radio, we got TV, we got internet, but social is its own beast that information and misinformation propagate. You know in this day and age we have more misinformation than ever on social media! And so several organizations have risen to the challenge. So the Crohn’s and Colitis Foundation of America: ccfa.org has wonderful information. You all your organization has some great links to articles and podcasts on the concept. I’ve perused the materials of course. And then we also need to recognize that inflammatory bowel disease education has to be tailored towards one’s culture and ethnic background and health literacy, of course, right. And so there are several different organizations that are trying to do that. Our organization that we founded the South Asian IBD Alliance, SAIA, can be found at southasianibd.org. We’re actually a physician and patient collaborative. We work together. Our board is docs, dieticians, gut psychologists, and patient advocates, most importantly, that help drive our educational mission. And we actually have a patient advocacy arm known as IBDesis. Desi is the word for someone of South Asia. And it’s IBD, one D as in David, ESI. So that’s our way. At IBDesis and South Asian IBD Alliance, we work together. We do monthly patient webinars, where we have clinicians and patients on a panel, and then open a live Q&A. And by doing so we try to normalize the conversation on IBD. We try to provide good solid trustworthy education, and then be a trusted resource for open question and answer. So that’s been our approach in SAIA. And then we also try to make the information culturally appropriate. Our diet differs from the standard American diet. And so we talk about diet and IBD from a South Asian lens. And similarly, we approach Western medicines like biologics and immunosuppressants through the lens of a South Asian physician and patient, rather than just how we practice in the West alone.
Zoe Rothblatt 17:00
So much of what I’m hearing from you is that patients really do have a seat at the table and are a partner in care. And I think that it’s so important for people in our community to hear that because so often people have had doctors not believe in them, especially with something like IBD, which is such a personal condition to live with. I think it’s so powerful to hear from you that you’re listening to patients, you’re pulling them into conversation, you’re putting them in leadership positions and saying, you know, it really is all about the patient at the end of the day.
Dr. Neilanjan Nandi 17:30
And that’s it. At the end of the day, it’s all about the patient. That’s what medicine is about. It’s not about the team, it’s about the patient, and the team serves the patient. This is the standard of care! And if you don’t elevate that patient’s voice, if you’re not listening to that patient’s voice, then it doesn’t matter if you have the greatest treatment. The treatment only matters if the patient tells you that everything that’s impacting them by IBD gets better, right? So we have this new philosophy, if you will, called patient reported outcomes or PROs. These are actually outcomes that we look for in clinical trials. It used to be that when we give a patient a medicine in IBD, we look to see the decrease in bowel movements, and we do scopes on them and make sure that the intestinal lining, the mucosa, has healed. Those are very important. But we were always failing to ask: how has the IBD affected your quality of life? And have those things gotten better? And many times, we were missing the mark. That’s unacceptable!
Zoe Rothblatt 18:25
Yeah, the labs can only tell so much of the story. There’s a lot there that patients are experiencing. And it’s so important to take into consideration things like patient reported outcomes, because it is your quality of life and your everyday life. And if you can’t participate meaningfully in your daily activities, that’s not okay. You know, we need to figure out a better plan.
Dr. Neilanjan Nandi 18:45
Exactly right.
Zoe Rothblatt 18:46
You know, before we go, I wanted to ask you about your podcast. You host IBD Crosstalk for GI Insights. Tell us about that podcast and the types of discussions you have there.
Dr. Neilanjan Nandi 18:55
I’m very, very fortunate to be the host of that podcast. It’s sponsored by ReachMD, which is a CME company. And they gave me a platform to invite cutting edge guests to learn about cutting edge topics. And it’s called “crosstalk” because we try to talk about interdisciplinary things, the cross-section of rheumatologic, and dermatologic, but also how do we use X-rays? How do we use intestinal ultrasound? How do we use virtual reality as digital therapeutic? How do we think outside the box? So I try to pull in different disciplines rather than just gastroenterologist alone and talk about all these different facets that impact the care of the IBD patient. It’s geared towards an audience of physicians and medical professionals, but we have a lot of patients who listen to it too. And I think that’s great, because patients should not be excluded from the level of conversation that we have as clinicians.
Zoe Rothblatt 19:39
And yeah, I think it helps so much to say it’s open to everyone. Try and listen and feel like you can be your own advocate. And it sounds like you’re helping your colleagues be the best advocates they can be for patients as well. So thank you for all you do.
Dr. Neilanjan Nandi 19:52
I appreciate it. Thank you very much for having me.
Steven Newmark 19:55
Wow. Zoe, that was a really great interview.
Zoe Rothblatt 19:57
Thank you. Yeah, we learned a lot. And speaking of learnings, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 20:03
Well, I learned from you about the various specific numbers that afflict deaths in the U.S. when it comes to COVID, flu, car accidents and the comparison I found to be quite illuminating.
Zoe Rothblatt 20:12
And I learned from Dr. Nandi just how important patients play a role in their care and how, you know, through the lens of a provider. It really does help when patients are speaking up and advocating.
Steven Newmark 20:24
We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 20:33
And who knows, whatever you’re sharing may be included in our listener feedback portion of future episodes.
Steven Newmark 20:38
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 20:43
Well, everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 21:00
I’m Steven Newmark. We’ll see you next time.
Narrator 21:05
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
S5, Ep 1- The COVID-19 Pandemic: A Marathon with the Finish Line in Sight?
In his most optimistic outlook since declaring COVID-19 a public health emergency of international concern in January 2020, the World Health Organization’s Director-General, Tedros Adhanom Ghebreyesus, stated last week that “We are not there yet. But the end is in sight.”
The rollout of vaccines and therapies have undeniably helped curb deaths and hospitalization rates, but with protective measures being eased and over 1 million deaths this year alone, COVID-19 remains a cause for concern while governments explore how best to manage it going forward.


The COVID-19 Pandemic: A Marathon with the Finish Line in Sight?
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
It kind of feels like we are moving on. Mask orders are gone. Also proof of vaccination has completely disappeared. You know, it’s hard to hear that all of these things are ending and I still feel like we’re hearing about new infections. We’re entering the fall and we should expect a surge.
Steven Newmark 00:30
You’re listening 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 healthcare world to help you make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes listen to all of GHLF’s great podcasts. We have so many to choose from!
Zoe Rothblatt 00:57
We sure do! And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Wellness Evolution. We know it’s a really stressful time with, you know, the end of summer, lots of changing guidelines, so definitely take a break and listen to how the hosts are practicing wellness.
Steven Newmark 01:16
Excellent.
Zoe Rothblatt 01:17
So let’s start with a listener comment. Ready, Steven?
Steven Newmark 01:20
I am ready.
Zoe Rothblatt 01:21
This one is from Claud P who wrote “Engaging hosts! Really enjoy this podcast!”
Steven Newmark 01:26
Thanks, Claud, we really enjoy putting on this podcast and we really appreciate your listening.
Zoe Rothblatt 01:31
We sure do enjoy it so much that we are back for season five. We’re so excited to keep the show going and talking to you all.
Steven Newmark 01:39
Yes, yes! Season five! And there is already a lot to talk about.
Zoe Rothblatt 01:43
That’s right, Steven. You know, as the COVID-19 pandemic lingers, many restrictions and protective measures have been relaxed quite a bit. But we know that health care professionals are still at the frontline of this and immunocompromised patients in our community are still at risk. So is it really behind us, what’s going on with the pandemic?
Steven Newmark 02:02
Well, we’ll talk about that in a few minutes. But first, let’s start with some news from the week. First up is the new boosters. The new boosters are here! The FDA has authorized two updated boosters, the bivalent COVID vaccine of Moderna and Pfizer. If you’re at least 12 years old, don’t have an active COVID infection, and it’s been at least two months since you’ve had a booster, you’re eligible for the new booster.
Zoe Rothblatt 02:24
Okay, big round of applause! This is exciting! I know many in our community are excited about it. Because you know, there’s been sort of a drag with getting vaccines and people may not have mounted a full response to the first vaccine and then to have new variants which that vaccine didn’t necessarily cover. This is really exciting because it covers that dominant strain of Omicron.
Steven Newmark 02:44
Yeah, I mean first of all, not only will the booster with the new vaccines decrease the likelihood of infection and severe illness, but it could also decrease the likelihood of developing long COVID.
Zoe Rothblatt 02:54
Yeah, which we know is a concern for our community who already lives with chronic illness, you don’t want to add another chronic condition on top of that. It is a lot to manage!
Steven Newmark 03:03
Right. Many folks in our community have already gotten their boosters, and some have reported getting that and the flu shot at the same time.
Zoe Rothblatt 03:09
Which is awesome. It’s always good to hear from people about their experiences. But as a reminder, you know, always talk to your doctor about getting the shot, and if you need to pause any regular medications to do so.
Steven Newmark 03:20
Now, obviously, having just listened to this, our listeners know all about the new vaccines. But there is some bad news. The boosters are getting very little fanfare. And you know, there’s a fear that too few people might get them. The CDC has said that a national survey found that 72% of respondents said they were likely to receive an updated booster but to actually get them vaccinated requires making the boosters easily accessible and making sure folks know that their benefits. So hopefully we’re continuing to get the word out and I would put forth on to our listeners: don’t just get a vaccine yourself, but make sure to spread the word about the new boosters.
Zoe Rothblatt 03:54
That’s a really good point! And you could also point people to this tool on the CDC website that calculates if you need a booster. You know, you put in your age, if you’re immunocompromised, you know, what vaccines you got in the primary series, if you’ve got a booster, and it lets you know if you are eligible for this vaccine. So that’s a really great tool for people who just simply don’t know the answer.
Steven Newmark 04:15
So more good news. The uninsured rate has approached a record low. Census numbers that were just released, show that 8.3% of Americans or roughly 27 million people did not have any health insurance in 2021. Well, that’s still, I would say unacceptable. It is an improvement from 2020 when 8.6% of Americans were uninsured.
Zoe Rothblatt 04:36
And this is a result of Medicaid, which is the public health insurance option for people with low incomes. And what’s really interesting is that Medicaid rates have increased because of the COVID Relief Bill that Congress passed in March of 2020. So I guess you could say, you know, there’s some good that’s come out of the pandemic because the Family First Coronavirus Response Act basically mandated that Medicaid programs not forcing enrollees to requalify for the program. So it just eliminated a lot of those extra steps like, you know, having to fill out more forms, realizing the plan year is ending, and you have to, you know, get together all your stuff and re-qualify, you just sort of rolled into the next year. So Medicaid enrollment has grown.
Steven Newmark 05:16
Yeah, um, you know, it’s important to advocate, talk to your elected officials about the importance of health insurance and how it helps you to stay healthy.
Zoe Rothblatt 05:23
Totally! And if you want to do so you could always join our 50-State Network. We’re a group of advocates, and we will help raise your voice to legislators and talk about issues that you care about. Okay, Stephen, I want to give a quick update on the methotrexate access issue. We haven’t talked about in a bit and it feels like it’s maybe died down a bit. I’m hearing less from our community about the issue and I guess less from the media too.
Steven Newmark 05:47
Well, let’s just remind our listeners what the methotrexate issue exactly is.
Zoe Rothblatt 05:52
Yeah, good call. So you know, after the overturn of Roe v. Wade, and some states with trigger laws, they called out methotrexate as a restricted drug, because it has this other use that it can be used for an abortion, but we know that many in our community take methotrexate for things like rheumatoid arthritis, to help control their arthritis, and avoid irreversible joint damage. Actually, methotrexate has been around for decades, it’s like one of the oldest drugs used. So you know, obviously, when they call this as a restricted drug, people started having access issues. And I wanted to share that I actually take methotrexate and I moved to Tennessee. I was a little bit worried based on the laws here, and I was able to successfully order it. So I want to tell our listeners, you know, my specialty pharmacy worked for me. And when I talked to others in our community about this, I learned that you know, it might be a problem at the local pharmacy, but this specialty pharmacy is a really good resource. So definitely, you know, talk to your doctor about what the best pharmacy is to work with when you’re ordering your medications.
Steven Newmark 06:51
Well, that’s great news! I’m glad to hear that the stories from our community seem to be dwindling in regard to this topic. That’s a good thing.
Zoe Rothblatt 06:58
Yes, me too, because no one should ever have to take extra steps to get their medication even if they are able to get it. If it takes more prior authorizations and verifications. It’s still delaying people, which just isn’t fair and leaves people in pain.
Steven Newmark 07:12
Absolutely.
Zoe Rothblatt 07:14
Okay, let’s go back to my original question, you know, are we still in a pandemic?
Steven Newmark 07:19
Ahhh- That’s a long winded way of saying: I’m not sure. I will say that precautions like masking and distancing are clearly not being enforced. But that said, healthcare professionals are still on the frontlines of the pandemic. And, you know, high risk patients are as well and folks are wondering if the country as a whole, the world as a whole, is moving on too quickly. Yeah, it kind of feels like we are moving on. Capacity limits are gone. When you go into places, I’m seeing that restaurants, sporting events, everything’s at full capacity. Yeah.
Zoe Rothblatt 07:55
Mask orders are gone. I just took a flight, I was one of two people in a mask. And also proof of vaccination has completely disappeared. There was a while where we had to show our vaccine card to get in restaurants. And you know, that’s gone, too.
Steven Newmark 08:10
Yeah, yeah, it’s true. We never have to show vaccinations anymore.
Zoe Rothblatt 08:13
And on top of that, you know, the CDC recently loosened their guidance on social distancing and quarantine. And, you know, the free government at home COVID-19 rapid test program ended earlier this month, which, you know, it’s hard to hear that all of these things are ending and I still feel like we’re hearing about new infections, BA.4 and 5 are swarming, we’re entering the fall here, and based on previous years, it feels like we should expect a surge.
Steven Newmark 08:42
Yeah. So let me ask you a question. What would be one positive that you would take from the last two and a half years? And also ask a second follow-up question on top of it. What is one thing you’re currently, September 2022, that you’re dispirited about, at this phase of the pandemic?
Zoe Rothblatt 09:00
One positive, I think people are more aware of, you know, staying home when you’re sick. I think before like a lot of people I remember used to show up to class with a runny nose and I would feel so upset because I’m like: “what are you doing here? You’re gonna get others sick” and now I think people know, you know, if you don’t feel well take a step back and stay home. It doesn’t have to be COVID. Like any illness, like really, you shouldn’t be spreading it because you don’t know who around you is high risk.
Steven Newmark 09:27
That’s a good one!
Zoe Rothblatt 09:28
And to answer your other question. What am I sort of feeling like dragged and upset about? I’m feeling upset that it feels like most people around me are talking about COVID as if it’s completely in the past, and I don’t know how you get people to realize it’s still going on. And I’m fatigued too. I’ll admit, I’ve become more relaxed with the mask, especially when no one around me is wearing one, it’s hard to keep it up. It’s exhausting. And you want to be social and protect your mental health but at the same time, it’s really hard to balance all that. And Steven, I’ll throw the question back to you. I’m curious to hear where you stand with all this.
Steven Newmark 09:28
I like what you said about being sick. Just a quick anecdote story, I was talking to a friend who works at a big fortune 500 company. And you know, the joke there about the sick policy was: there is no sick policy. There’s no such thing as calling in sick. But that has completely changed. So that goes to your point. But just so I don’t take the same answer as you. I think one of the things I do like is that it’s become somewhat acceptable to wear a mask in public. And I like that COVID aside, and like that for the flu season. On the flip side, where I am today, I think what I’m most frustrated is, I hear some variation on the phrase of: “oh, it’s like the flu. It’s like a cold. It’s like the flu. Now. COVID is just like the flu.” And it’s not, because the flu infects and kills a certain amount of people each year. But the amount of people that have died as a result of COVID just dwarfs anything that comes near the flu; it’s not the flu. I think conflating the two is problematic.
Zoe Rothblatt 10:57
And you know, the flu is still very serious. You know, we get our flu shots every year for a reason. We can’t just say: “Oh, it’s just the flu.”
Steven Newmark 11:04
Right? Who wants a second flu out there?
Zoe Rothblatt 11:06
Yeah. And you know, with the flu, we know that it’s seasonal. There’s, I guess a time of year where we could sort of take a break from it. With COVID, we haven’t had that luxury. It’s been nonstop, right? So you know, where do we stand with vaccines, one of our best tools when it comes to COVID? I was looking at some numbers, only 67% of the US population are considered fully vaccinated, and only 32% have received a booster. So when you think about that, like what even is fully vaccinated anymore? If you got your first series in 2021, we’re nearing 2023. Is that still protective? You know, is the number of people protected really at 32%? So we’ll see what happens with this new booster. But you know, there’s still a lot of misinformation out there. And I guess vaccine fatigue is something I’ve been thinking about recently, you know, experts are saying we’re going to need a flu shot and COVID shot every year. And it’s a lot! So I think it will be easier as time goes on, and we get more defined time periods to get the vaccine, like we know, annually get your flu shot. With COVID, it’s been sort of a peek into the news and figure out when you need it. And that’s a little fatiguing. But once we get on a rhythm with it, I think it’ll be, you know, helpful and more understandable.
Steven Newmark 12:02
Right Yeah, that’s a good point. There’s a timing element, you know, we discussed the tool on the CDC’s website. If you contracted COVID, how long has it been? You have to plug in different permutations to figure it out. You know, it’s early September, I have an appointment to get my vaccine. I haven’t gotten it yet. And part of what I’m waiting for, my appointment is in early October, I kind of want to get a little more separation since I contracted the illness. I’m also like, have the mindset, you know, should I wait until there’s a particular moment, a particular event that I’m going to be at, Thanksgiving perhaps.
Zoe Rothblatt 12:56
Right, with the holidays, what will those look like this year?
Steven Newmark 12:59
Right. So do I want to wait to get the vaccine, let’s say two weeks before then so I have peak immunity for something like that? It’s such a tricky thing.
Zoe Rothblatt 13:06
It’s so tricky. And something else I want to mention here, that I was reading comments from people in our community, is that many feel unsafe to even go get the booster because in some pharmacies, people aren’t wearing a mask. So it feels risky, you know, to go in and the person administering the vaccine may not be in a mask, and you’re trying to get this protection, but you also could be putting yourself at risk at the same time and I think these little nuances that feel so obvious to our community aren’t coming through in the general public. And that’s where we feel left behind.
Steven Newmark 13:37
Absolutely. So given all this, I guess it feels like the pandemic is still ongoing in some twisted way. And we will keep you at the ear, of course on The Health Advocates.
Zoe Rothblatt 13:46
Yeah, I would say so. I’m going yeah, we pointed to a lot of things. You pointed to the impact on health care, immunocompromised, long COVID, the vaccine conversation. Different restrictions are still being talked about whether they’re removed or here they’re being talked about. Given all that, to me, it feels like the pandemic is going on. And then you’re like, am I in a different world than everyone else? But you add up all these points. And yeah, it’s still going on.
Steven Newmark 13:46
Yeah you know who said this really well is the Executive Director of the World Health Organization.
Dr Tedros Adhanom Ghebreyesus 13:51
“We have never been in a better position to end the pandemic. We’re not there yet. But the end is in sight. A marathon runner does not stop when the finish line comes into view. She runs harder with all the energy she has left. So must we! We can see the finish line. We are in a winning position. But now is the worst time to stop running. Now is the time to run harder and make sure we cross the line and reap the rewards of all our hard work.
Zoe Rothblatt 14:51
Okay Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 14:55
Well, I learned from you about the CDC’s tool. I actually had.. I was not familiar with that, but I’m excited to start plugging it in. And maybe then I will actually figure out when to get my booster.
Zoe Rothblatt 15:05
And I learned from you about how the uninsured rates decrease as a result of Medicaid expansion during COVID.
Steven Newmark 15:13
Well, we hope that you learned something too. We’d love to hear from you. Email [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 15:21
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 15:27
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 15:32
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 like this episode, give us a rating and write a review on Apple Podcasts. And definitely hit that subscribe button wherever you listen and share this podcast with your family and friends. It’ll help more people like you, find us. I’m Zoe Rothblatt.
Steven Newmark 15:53
I’m Steven Newmark. We’ll see you next time.
Narrator 15:58
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
S4, Ep 13- Project Wheelchair Runway
Disability representation in the fashion industry has a long history with rheumatoid arthritis designer Michael Kuluva who has championed this issue for years. Kuluva designs accessible clothing, raises awareness for chronic illness through fashion and features advocates like Kelly Boyd as models in his Tumbler and Tipsy show. Now, we meet Kellie Cusack who lives with spinal muscular atrophy, and will be featured in a fashion show, as she “rolls down the runway” at New York Fashion Week on September 8th”
“Fashion really does play a role in your health,” says Zoe Rothblatt, Associate Director, Community Outreach at Global Healthy Living Foundation. “The physical and mental health is so tied together; you want to feel good in what you’re wearing when you’re already feeling so bad about living in pain. It really does make a difference to look good and feel good, as they say.”


S4, Ep 13- Project Wheelchair Runway
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
Fashion really does play a role in your health. The physical and mental health is so tied together, you want to feel good in what you’re wearing when you’re already feeling so bad about living in pain. It really does make a difference to look good and feel good as they say.
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 00:36
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:41
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts. We have so many to choose from.
Zoe Rothblatt 00:55
We sure do. And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Healthcare Matters, hosted by our colleagues, Robert Popovian and Conner Mertens. They do a deeper dive on policy issues and season three is coming soon. So definitely get caught up on season two.
Steven Newmark 01:15
I call Robert and Conner the smart guys because they seem to know it all when it comes to health policy matters. So definitely check it out.
Zoe Rothblatt 01:22
Let’s start with the listener comment. Are you ready?
Steven Newmark 01:24
Let’s do that.
Zoe Rothblatt 01:25
Okay, this one is from Nick P who wrote, “Great podcast with timely topics.” Steven, this week we have a special guest interview and I’m really excited for you to hear it. I spoke with LGBTQ advocate Kellie Cusack, who on September 8th, she’ll roll in a first of its kind runway show preceding New York Fashion Week.
Steven Newmark 01:45
What do you mean? What do you mean roll?
Zoe Rothblatt 01:47
So Kellie lives with spinal muscular atrophy and uses a wheelchair so she will be taking part of the show called Double Take, which is a fashion show aimed at increasing disability visibility and break down stereotypes around fashion. So to really showcase adaptive fashion, Kellie and other people living with disabilities will be participating in the show.
Steven Newmark 02:09
Oh, sounds exciting.
Zoe Rothblatt 02:10
Yeah, it’s really exciting. And she came on to speak to me about her condition and for her hopes about what people will learn from this fashion show.
Steven Newmark 02:19
Excellent. Well, I can’t wait to listen.
Zoe Rothblatt 02:20
As we always do, we have a few news updates before we hear the interview.
Steven Newmark 02:24
Well, we had another LGBTQ advocate Kellie Cusack, who on September 8th, she’ll roll in a first of its kind runway show preceding New York Fashion Week. we asked our community what our folks think about the new CDC guidelines and what their plans are now.
Zoe Rothblatt 02:34
Surprisingly, 95% of the people that answered, and as a reminder these are people living with chronic illness, so they had not heard about the latest CDC COVID guidance before our poll came out.
Steven Newmark 02:46
70% said they feel unsafe due to the less restrictive guidance and 27% said they feel the same.
Zoe Rothblatt 02:55
About half of respondents from the poll said they’ll continue going out in public the same amount. And the other half said they’ll go out less often. In the free response section, it became clear that people who are going out the same amount are still following the traditional COVID safety precautions like masking, social distancing, and hand washing.
Steven Newmark 03:12
I definitely get the sense that the number of mask wearers is really dipping, almost falling off a cliff. Anecdotal, this is not a poll, but New York City public transit where it’s technically still required, my gut is it’s down to about 15%. Whereas at the beginning of the summer, I felt it was well north of 50%.
Zoe Rothblatt 03:33
Here in Nashville, Tennessee, it seems like I’m one of the only ones wearing a mask. By the way, in the free response section of the poll, many, many people highlighted how a mask would just make them feel so much more safe.
Steven Newmark 03:45
I continue to wear my mask, and I have to be completely honest about it. I do feel like a big reason I wear the mask is less for personal protection at this point and more to make it as socially acceptable as possible to continue wearing masks.
Zoe Rothblatt 03:58
I don’t think you need a reason. It feels good. When I see somebody else with a mask, it’s almost like we have a little wink at each other like, “Oh, yeah, you too. Awesome.”
Steven Newmark 04:07
That’s true. And as I said many times, it’s not just COVID. I don’t want to get the flu, I don’t want to get heck, I don’t even want to get a cold if I can avoid it.
Zoe Rothblatt 04:14
Especially when you have chronic illness, like any little ailment, it’s not exaggerating, when you say it really does have an impact. I live with arthritis and Crohn’s and if I even have a little cold, I feel it in my gut, I feel it in my joints. It’s an all over really bad feeling. And then sometimes you have to pause your medication so then your chronic illness acts up, it takes you for a loop. Our next piece of news, there was a new study published and it was about support and needs in the workplace for chronic illness. So let’s go through some of the results and then talk about what people can do. The study was published in Arthritis Care and Research. It actually focused on Canadian rheumatic disease patients between the ages of 18 and 35. So what they wanted to do was learn more about how telling a supervisor about a rheumatic disease might impact the level of workplace support. Interesting question.
Steven Newmark 05:07
So what did they find?
Zoe Rothblatt 05:08
So they found that 70% of young adults told their immediate supervisor about their condition, which I was surprised. Working in a health care organization, I feel more comfortable to talk about my chronic illness, on the podcast with you and at work in general, but interesting when we work at a place where people understand and we’re working with patients all the time, so there’s like a natural way to bring it up. I was surprised for the people who don’t, it must be really challenging to do so.
Steven Newmark 05:36
I think similarly to the 70% of young adults, I was more inclined to tell my immediate supervisor but not go beyond that.
Zoe Rothblatt 05:44
Right.
Steven Newmark 05:44
First of all, I had to go get infusions. And that requires a lot of time away from the office. So I felt I had to say something. It would have been awkward for me to not say something.
Zoe Rothblatt 05:55
Yeah, here’s what else the survey found. They measured presenteeism, which is the concept of showing up for work but not being productive. I think we’ve all found ourselves there, chronic illness or not. And they found that presenteeism was high, especially when workplace supports needs were not met. And the opposite was true to so that when the supervisor and organization met the needs of the employee, presenteeism was lower.
Steven Newmark 06:23
It’s a different feeling when you feel as if you and your work product is valued versus your body being present in a certain place is is the value.
Zoe Rothblatt 06:31
So here are some of the most wished for workplace supports. Number one, a flexible work schedule.
Steven Newmark 06:38
Yeah.
Zoe Rothblatt 06:38
Two, prescription drug coverage. Three, extended health benefits. Four, paid sick leave. Five, modified job duties. And six, an ergonomic and accessible workstation. As advocates, what can you do if you find yourself in a situation where you know you’re at work and you need some of these things and don’t know what to do?
Steven Newmark 06:57
I think it’s important to remind everyone to advocate for yourself in the workplace. If you don’t feel comfortable talking to your supervisor, talk to someone perhaps in your human resources department and ask for the company’s disability plan and insurance policy. And of course, know your rights. There is the Family Medical Leave Act, FMLA. That allows you to take up to 12 weeks a year for medical emergencies, and the Americans with Disabilities Act, which requires employers to make reasonable accommodations for disabled workers.
Zoe Rothblatt 07:24
All great reminders. Thank you for that. I think it’s important to remember that advocacy can mean talking to your legislators, but it can just mean you know, sticking up for yourself in everyday life and getting your basic needs met.
Steven Newmark 07:35
When you’re standing up for yourself, you’re also standing up for others. Because the more you normalize, what it is to have a chronic condition and the more you show that as a member of the chronically ill community, you’re still a productive member of the workforce. The more folks that see that, the more you’re actually helping others.
Zoe Rothblatt 07:53
Amen, well said.
Steven Newmark 07:55
In other news, Texas has confirmed the first US death of an individual who had monkeypox. It’s not yet known whether the individual died from monkeypox, but what we do know is that the patient was severely immunocompromised.
Zoe Rothblatt 08:09
When I saw this headline, I got nervous because, you know, we know our community is at high risk for a variety of illnesses. And this was the first death publicly reported by health authorities during this current monkeypox outbreak. So I think what you said is true, it’s too soon to know if it was monkeypox. We’re waiting for autopsy results. And instead of being scared, we have to figure out you know, what can we do in the meantime? What can we do to stay safe? And I think it goes back to what we always talk about, you know, make a plan.
Steven Newmark 08:39
Always talk to your doctor. Don’t be scared, but there are scary things out there.
Zoe Rothblatt 08:39
Yeah.
Steven Newmark 08:39
But talk to your doctor to help navigate the world.
Zoe Rothblatt 08:41
Sometimes headlines are put in a way to make it sound scary. So take it with a grain of salt and know that you have a community here with us and we’ll continue putting out information on monkeypox and what you need to know. Well, Steven, and our listeners, have you ever wondered what it’s like to be in a fashion show that’s focused on people with disabilities? Well the good news is that disability representation in the fashion industry has a long history with rheumatoid arthritis designer Michael Kuluva. He’s championed this issue for years, actually. Kuluva designs accessible clothing, raises awareness for chronic illness through fashion, and features patient advocates, like Kelly Boyd, as models in his New York Fashion Week Tumbler and Tipsy shows. Now we meet Kellie Cusack, who lives with spinal muscular atrophy and will be featured in a fashion show as she rolls down the runway at New York Fashion Week on September 8th. Let’s press play on this interview and learn more from Kellie about how she advocates for the disability community and increases awareness of adaptive fashion. Welcome, Kellie.
Kellie Cusack 09:41
Hi, thank you for having me.
Zoe Rothblatt 09:43
Of course. Tell us a little bit about your story and what it’s like living with SMA.
Kellie Cusack 09:48
Yeah, sure. So I’m Kellie, I’m 23 and I have SMA type 2. For me, that means you can see I have a wheelchair, and I love being in my wheelchair you know. Living with SMA definitely isn’t easy but I’m so grateful for my community and people and friendships and make it worthwhile.
Zoe Rothblatt 10:09
So tell us about the community, how did you become an advocate and start sharing your story and connecting with the community?
10:17
I started doing fundraisers with my mom and a bunch of my middle school friends when I was around 10 years old. And ever since then, I’ve just been really involved. I can’t remember exactly what year but my mom and I became co chairs for the New Jersey chapter of Cure SMA. And we’ve been doing so many amazing things since then. And the conference has really helped me find my community, find the people just, I don’t know, feel better about my disease when it’s really hard and have hard days.
Zoe Rothblatt 10:49
For sure, having a community is so special. Just that feeling of when you know someone gets it on some level and can connect with you. It definitely inspires me to share my story when I’m talking with people that get it. You mentioned you’ve done some stuff over the years. Is there like an event or a day that that stands out to you?
11:09
Oh, there’s so many that I love so much. I love the bake sales we did, and we did something called the Bowl-A-Thon where we partnered with a local bowling alley. And all the fundraiser money went toward Cure SMA, and it was so much fun. We had pizza, all kinds of different foods and everyone just had a great time.
Zoe Rothblatt 11:29
I think it’s so great to have fun while you’re doing important work. We’re really here today to talk about this upcoming fashion show. Tell me about the show that you’re taking part of, it’s coming up proceeding New York Fashion Week.
11:42
Yeah. So it’s called Double Take. And basically, the whole concept is that it’s all about disability representation and advocacy, and also the SMA community, and just finally representation in that because we turn through life, it’s hard to find things that are fashionable for us. I know for me personally, and a lot of my other friends we shop in kids clothes in kid’s sizes, sizing, and it’s hard to be inclusive and accessible that way. This show tied to us in the community, and I’m so excited.
Zoe Rothblatt 12:15
And how did you get connected with the show?
12:17
James is music video spaces I saw online. And I just loved it so much. I posted about it online, and then someone from his team reached out to me and said, “Hey, we how much you love his project. We’re gonna do something similar. Would you like to be involved?” And I was like, absolutely. Yeah, that sounds like so much fun.
Zoe Rothblatt 12:40
The show aims to increase disability visibility, break down stereotypes, and really focus on adaptive fashion. What does this mean to you? And what kinds of changes would you like to see in fashion?
12:53
For me, personally, I feel like price points for me, I feel I need to change, it’s just not accessible enough, if that makes sense. So for me in the future, I just hope that it will be more affordable and just easier to get access to.
Zoe Rothblatt 13:09
There’s so much that goes into caring for your health. And I think people just think of it as between you and the doctor. But it’s actually so much more than that. And fashion really does play a role in your health and the physical and mental health is so tied together. You want to feel good in what you’re wearing when you’re already feeling so bad about you know, living in pain or whatever it is. It really does make a difference to look good and feel good as they say,
13:35
Yeah, definitely I think in my head a lot, sometimes about like what’s going on in SMA. So an outfit really changes my perspective. And just gets me out of that, makes me feel so much better.
Zoe Rothblatt 13:48
Me too. I’m with you. An outfit can turn around my day. When others see this show, what do you hope that they’ll learn and take away from it?
13:56
I hope people see us for who we are, that we’re human. And just to see the disability community in a different light and just know how powerful that is, that representation and how important it is for sure.
Zoe Rothblatt 14:09
I think that’s such a good point about you know, seeing disability people in a different light. We can participate in society like everybody else and have fun and be beautiful and be showcased in a fashion show. And I think it’s so amazing that something like New York Fashion Week, which is so big, that we’re able to be part of it. So thank you for all that you do.
14:33
Thank you so much! It’s so much fun. When they said Fashion Week and like what okay.
Zoe Rothblatt 14:38
It’s so cool. Do you have your outfit picked out?
14:40
I can’t say much about it. Yeah, I have my outfit picked out. I’m so excited!
Zoe Rothblatt 14:45
What is your advice for other people out there looking to raise their voice and just don’t really know how to get started?
14:52
Honestly, just get involved, locally. Whatever disease you have or disability, whatever you may have, like look online. All these different organizations, just see how you can get involved. I feel like everybody has a different chapter of organizations for advice. And you never know or even just you can ask for people and say, “I have this, you know, what resources do you use?” That’s really helped me to be more out there.
Zoe Rothblatt 15:20
Well, speaking of getting involved in finding your community, how can our listeners find you and stay in touch with you?
15:26
So I haven’t blogged for thewildwarrior.wordpress.com. And my Instagram, which is #kellielynne99.
Zoe Rothblatt 15:40
Awesome. Well, thank you so much, Kellie, for sharing your story with us and our listeners, and we’re excited to see you in the fashion show.
15:47
Thank you for everything, Zoe! I really apprecaite it.
Zoe Rothblatt 15:52
Thank you to Kellie for sharing with us and our listeners, we hope that the fashion show goes really great. If you’re interested in seeing Kellie roll the runway and other disability advocates as well, we put a link to the fashion show in our show notes. So definitely check it out. I encourage you to watch it on September 8th. That brings us to the close of our show. Steven, what did you learn today?
Steven Newmark 16:13
Well, I learned from our discussion, the term presenteeism. I’m guessing it’s a new term because I had not heard it before. And I learned that it’s the idea of when you’re at work and physically present, but not altogether working too hard.
Zoe Rothblatt 16:26
And going off of that, I learned well as a reminder about the importance of knowing your rights in the workplace.
Steven Newmark 16:32
Well, we hope that you learn something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:45
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 16:52
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 16:57
Well, everyone thanks for listening to The health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts. And definitely hit that subscribe button wherever you listen so you never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 17:15
I’m Steven Newmark. We’ll see you next time.
Narrator 17:20
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 12- Fauci, the CDC, and Confidence in Public Health
Trust in public health officials is on a steep decline, so it’s no coincidence the Centers for Disease Control and Prevention is ordering an overhaul of its operations. It comes at a time when Dr. Anthony Fauci, Chief Medical Advisor to seven Presidents, has decided to step down at the end of the year.
“When the pandemic hit, I think we all had to immediately become public health experts and a lot got lost there,” says Zoe Rothblatt, Associate Director, Community Outreach at Global Healthy Living Foundation. “So maybe now’s the time to step back and learn a little bit about how it works.”


S4, Ep 12- Fauci, the CDC, and Confidence in Public Health
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
When the pandemic hit, I think we all had to immediately become public health experts and a lot got lost there. So maybe now’s the time to step back and learn a little bit about how it works.
Steven Newmark 00:21
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 00:35
Our goal is to help you understand what’s happening in the healthcare world to make informed decisions to live your best life. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:48
We sure do, and you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Talking Head Pain hosted by Joe Coe. In one of the latest episodes, Joe chats with Dr. Leroux about starting migraine associations in Canada.
Steven Newmark 01:04
Great.
Zoe Rothblatt 01:05
Let’s start with a listener comment. Are you ready, Steven?
Steven Newmark 01:07
I am ready.
Zoe Rothblatt 01:08
This one is from Sammy S, who wrote, “I look forward to this weekly. So happy I found this podcast.”
Steven Newmark 01:14
Well, thanks, Sammy S. This week in the news, there was a final rule issued on how surprise bill disputes will be settled. Early on in the year we talked about the No Surprises Act, now a federal law, that protects patients from out of network medical bills when they seek care in network facilities.
Zoe Rothblatt 01:32
What this means basically is that now the surprise billing arbitration rules have been finalized. And this is just about how billing disputes are settled. Because you know, there still is a bill and although the patients are responsible, it has to be handled in some way. So you know, if you’re seeing this as someone that lives with chronic illness, don’t worry, your protections still remain the same under the act.
Steven Newmark 01:54
This rule is just about how the bill gets paid and which factors are considered for claim disputes. The final rule says that arbitrators charged with settling disagreements between out of network providers and insurance companies must first take into account the medium in network payment rate for service but also consider other factors including providers training and experience, the market share of a medical facility or insurance plan in that geographic area, how many services the provider offers and whether it is a teaching facility, for example.
Zoe Rothblatt 02:23
That is a lot of things to consider, and I’m glad it happens on the back end and patients can get the care that they need.
Steven Newmark 02:31
In bigger news, or more interesting news for our listeners, Pfizer has announced that they’ve asked the FDA to authorize an updated version of their COVID vaccine.
Zoe Rothblatt 02:40
So this is the one that’s specifically designed to target the Omicron subvariants that are now dominant in the US while also containing the original Coronavirus strain, right?
Steven Newmark 02:51
Correct. They’ve submitted their preclinical data on vaccine efficacy to the FDA. And this is a new booster that will target both the original Coronavirus strain, as well as the BA.4 and BA.5 Omicron subvariants.
Zoe Rothblatt 03:04
I think that if the vaccines authorized by the FDA-
Steven Newmark 03:08
Oh, is Macintosh vaccinated? He wants his vaccine I know.
Macintosh 03:08
Bark!
Zoe Rothblatt 03:11
Yes, he is almost due for his yearly boosters.
Steven Newmark 03:15
There you go.
Zoe Rothblatt 03:16
He’s ready. If this vaccine is authorized by the FDA distribution could start immediately which would time really well with potential Fall and Winter surges as we’ve seen with a pattern over the last couple of years that cases continue to rise. And this could get ahead of a new variant if it’s approved so quickly. One important thing to note about this news update is that the data that they submitted is a little bit different than what was used in earlier vaccine’s authorizations. So instead of waiting for the test results from human trials, the FDA just asked the drug companies to initially submit the results of tests on mice. And they’ll look at those results while the human trials are starting this month. Basically, they’re relying on those results, along with the human neutralizing antibody data from the earlier BA.1 bivalent booster studies because they had done vaccine studies on the earlier variants and they said we’ll make it more updated for BA.4 and 5. So there are still studies to look at. Our last piece of news is that Dr. Fauci announced he’ll be stepping down later this year.
Lester Holt 04:21
After 38 years as director of the National Institute of Allergy and Infectious Diseases, Fauci says he’s leaving that position as well as his role as President Biden’s top medical adviser in December.
Steven Newmark 04:34
To lead any institution for that long is really just incredible. That’s a testament in and of itself. He has advised seven US presidents starting with Ronald Reagan through the HIV AIDS epidemic, West Nile virus, the 2001 anthrax attacks, various bird influenza threats, Ebola, Zika, and of course COVID. And now monkeypox.
Zoe Rothblatt 04:54
By the way, when he made this announcement, he said, you know, I’m gonna focus on the next stage of my career. It is isn’t like okay, I’m gonna go sit on a beach somewhere. He’s ready and excited to do more.
Steven Newmark 05:05
Boy, at 81 years old, I hope that I’m having a next phase of my career.
Zoe Rothblatt 05:09
And me too. And of course, you know, many of us have become familiar with Dr. Fauci in COVID, he stepped into the spotlight, so to speak, and 2020 as you know, the face of the pandemic response.
Steven Newmark 05:21
Think back to how stressed we were in that time. And I know there’s still a lot of stress, especially for our community. But back then, when we were really hunkered down at home, and you sort of want something to be mad at, and you can’t totally be mad at a virus. And then there was this figure Dr. Fauci who stepped in, I think a lot of people directed anger towards him, which isn’t fair because public health isn’t political. It’s about protecting the health of the community. We’re making the decisions for the health of the community, and sometimes those decisions can counteract your personal opinion. It’s interesting, some of the news reports, referred to Dr. Fauci almost as controversial, which is, so if I may say, just unfair. The job of being the face of public health when dealing with a pandemic is so difficult trying to thread that needle between placing fear, the appropriate amount of fear, in the public’s view so that they take action, but not overwhelmingly fill them with fear. And you’re never going to make everyone happy. In some instances, you’re going to really make people upset. And in the age of social media, it’s easy to get people riled up. It’s unfortunate that there was so much negative blowback to someone who has worked so hard in his career for public health. On a very related note, there is a major change happening in public health leadership in the United States. CDC Director Rochelle Walensky has ordered an agency overhaul of its structure and operations.
Rochelle Walensky 06:51
We learned some hard lessons over the last three years. And as part of that, it’s my responsibility, the agency’s responsibility, to learn from those lessons and do better.
Zoe Rothblatt 07:00
Similar to what we were just saying, we know there’s been a lot of criticism of the CDC of how it’s handled COVID and now monkeypox. And this overhaul is an attempt to modernize the agency and rehabilitate that reputation.
Steven Newmark 07:14
Yeah, the goal is to improve how the agency shares information, develops public health guidance then communicate with the public.
Zoe Rothblatt 07:21
Let’s dive into some of that criticism. What happened? We talked about this in an episode a while ago that, you know, since COVID, public health officials have come under attack. You know, many have accused the CDC of federal overreach and on the other side of it, you know, many in our community have have said, you know, the CDC are just not doing enough to protect us.
Steven Newmark 07:40
The CDC’s authority has been challenged in multiple court cases, such as with the CDC directive that people wear masks on public transportation.
Zoe Rothblatt 07:47
They’re trying to clean up messaging. The guidance has been changing quickly and confusing. And I know that the COVID landscape changes quickly. So you know, of course, the guidance has to follow that. But that community level chart, there was some feedback that that was really confusing for people. And it sort of got people fatigued from all the change that people are lacking trust.
Steven Newmark 08:10
It is fatiguing. Interestingly, in March 2020, according to a survey by the Pew Research Center, 79% of Americans said public health officials, including those at the CDC, were doing a good job responding to the pandemic. By May of 2022, only 52% of Americans felt similarly.
Zoe Rothblatt 08:28
Wow, that is a pretty big jump in two years.
Steven Newmark 08:32
Yes, it is.
Zoe Rothblatt 08:33
Reviews were done to spark this change. I saw that there was two reviews in recent months, one by the Health Resources and Services Administration officials. And they looked into the pandemic response and another was the CDC Chief of Staff into the agency operations. And what their view said essentially was that you know, traditional scientific and communication processes were just not adequate to effectively respond to a crisis with the size and scope of the COVID pandemic.
Steven Newmark 09:04
Macrae’s review outlines a series of recommendations for improvement, number one, releasing scientific findings and data more quickly to improve transparency. Number two, translating science into practical and easy to understand policy. Number three, improving communication with the public. Number four, working better with agencies and public health partners and number five, training and incentivizing the agency workforce to better respond to public health emergencies.
Zoe Rothblatt 09:29
That all sounds great and think about it through the lens of our community. People want information. We want to know you know, how does this disease impact us specifically as someone living with a chronic disease who may be immunocompromised because of our condition or medication? So, you know, the CDC is going to be more transparent and improve communication with the public, I hope that our community is recognized in that because I know we’ve been feeling a bit left behind in the guidance, but this sounds promising.
Steven Newmark 09:58
It does. But this all begs the question, what is and what should be the role of the CDC?
Zoe Rothblatt 10:04
It’s a good question. I saw that Director Walensky said, “I actually really think many people thought this is CDC’s responsibility to fix public health in the pandemic. But the CDC alone can’t fix this. Businesses have to help, the government has to help, school systems have to help. This is too big for the CDC alone.”
Steven Newmark 10:23
Their name is the Centers for Disease Control and Prevention. That’s who they are. They’re a US federal agency mandating with protecting America’s public health, which is vague to say the least. I’m just reading from their website. This is their mission statement on their website, “The CDC works 24 hours a day, seven days a week to protect America from health, safety and security threats, both foreign and in the United States. Whether diseases start at home or abroad, are chronic or acute, curable or preventable, human error or deliberate attack, the CDC fights disease and supports communities and citizens to do the same.” That’s somewhat vague, you know, protect us from public health, great. Similar to saying, well, the role of the police department is to protect us from crime, or the role of your local fire department is to protect us from fires. I guess the question is in execution, are they an agency prepared to deal with a pandemic, you know, such as we dealt with the last few years? Are they prepared to deal with the political actors that necessarily have to carry out some public policy pronouncements, public health policy pronouncements. And as a friend of mine said to me, are they just not prepared to be a wartime consigliere, to quote from The Godfather. They’re fine, perhaps dealing with more low key public health, under the radar items such as trying to keep the health of Americans in check so to speak. When things get hairy, are they really the agency to go to?
Zoe Rothblatt 11:50
And I think that goes back to the directors quote I read a few minutes ago that really says we can only do so much, but we need the help of these other institutions. And aside from that, that is made up of individuals, and we need the help of individuals doing their part in order to make these efforts successful, but the CDC itself can’t be responsible alone.
Steven Newmark 12:12
Right, which sort of begs the question, again, in the real world, the agencies are headed by folks that have political bent, if you will. You don’t get to run an agency and certain agencies, particularly a cabinet level positions, like health and human services, without some understanding of the politics involved of what you’re doing. You have to deal of course, with the President, you have to deal with local state health officials who have to answer in turn to governors and mayors who are elected officials. So there’s an element of politics and dealing with the public that is very tricky and difficult to navigate. Just as a simple note, CDC is located in Atlanta. They’re not even headquartered in Washington. I mean that alone, I find fascinating that the emergency responsiveness is not headed in Washington, which is where the leaders are.
Zoe Rothblatt 12:57
And speaking of the leaders, you know, in this discussion, I’m thinking of the FDA and the NIH, the Food and Drug Administration, the National Institutes of Health, and how does that fit into the CDCs role? And what are each of them responsible for? So you know, the FDA supervises drugs, medical devices, clinical trials, and enforces the Federal Food and Drug and Cosmetic Act. So when you think about COVID, the FDA has been the one that’s responsible for authorizing the vaccines, the at home test, stuff like that, while the CDC may give a recommendation, the FDA is sort of the final say.
Steven Newmark 13:34
Yeah, I think that’s fair to say, well, the FDA by law is the only agency that can officially approve a drug.
Zoe Rothblatt 13:41
Yes. And then the NIH is focused more on medical research, and they’re responsible for those important discoveries.
Steven Newmark 13:49
Right. So bringing it all together, layered on top of that is the CDC and the CDC, they’re more of your public health folks. They advise local health departments about diseases, they advise the federal government and in particular, other federal agencies, the president, the executive branch about disease outbreaks that might be going on. They deal with chronic illness, how to address various disease states going on in the United States, but it’s essentially for others to promulgate policy and most importantly, enact and enforce that policy. You know, so it does beg the question, is there a particular person that should be layered on top, a sort of health czar, if not in title, in certainly in deed, it felt as though at times Dr. Fauci had played that role. At times, it feels like the Secretary for Health and Human Services plays that role in non-pandemic public health environments. But there is no one person that the President taps at a particular time to say, “Hey, you’re our health czar. You’re going to get us out of this.” And not that there should be because then like Dr. Fauci was, you have all eyes focused on you, which may not be a good thing either.
Zoe Rothblatt 14:55
I think maybe this overhaul will be helpful for us understand the role of people in the CDC and how the agency works. I think there’s going to be some new teams overseeing this overhaul. And they said they’re going to increase communication. So hopefully, the pieces will start to come together a little bit more. When the pandemic hit, I think we all had to immediately become public health experts and a lot got lost there. So maybe now’s the time to step back and learn a little bit about how it works.
Steven Newmark 15:27
Absolutely. And unfortunately, Zoe, I don’t think we’re going to get the answer in our 12 minute little podcast here. But my best advice would be something akin to when necessary, it should be incumbent upon a president to appoint someone almost temporarily to be that czar. President Obama did this with Ebola, he appointed Ron Klain, who is now serving as President Biden’s Chief of Staff. So Ron Klain is not a public health expert, but he’s somebody that understands government, he is someone that understands politics and policy. And he is smart enough to get up to speed when it comes to public health issues, and can act as the liaison and also understand when the CDC or some of the public health folks are not speaking publicly and making sense to the general public. He’s someone that can help interpret that for the general public and certainly to the president to help propagate stronger policies. So that would be my suggestion is, I don’t think there needs to be necessarily an ongoing health czar at all times, I think that would be unfortunate. But when needed, you can sort of have that role, somebody that steps up almost to a cabinet level type position within the White House.
Zoe Rothblatt 16:33
I think many in our community would appreciate that, because you know, they’re looking for someone that’s going to help guide and if there is that person, it could be really comforting in a stressful time.
Steven Newmark 16:43
Absolutely. And I would also caution and get back to the idea of clarifying the role of the CDC, which is investigating, figuring out what’s going on from their perch way down in Atlanta, figuring out what’s going on when it comes to diseases, and then promulgating suggestions that go up the food ladder. And by the way, I felt as though we spoke somewhat negatively about the CDC. But before we close, I do want to say I still rely on the CDC, I go to their website, I know that they are still, I think, the gold standard when it comes to information about public health information about what one should do when it comes to various diseases, whether it’s flu, zika, heart disease, diabetes. Their website is more trustworthy than any other source. I’m grateful that the CDC exists and puts the information out that they do.
Zoe Rothblatt 17:33
Yeah, me too. And by the way, not just in the US, but they’re highly respected all over the world. On that note, that brings us to the close of our show. What did you learn today?
Steven Newmark 17:46
I thought it was interesting, we talked about the new Pfizer vaccine coming out instead of waiting for test results from human trials the FDA asked Pfizer to initially submit the results only on mice so they can get this going quicker. And I’m happy to hear that.
Zoe Rothblatt 18:00
Yeah, me too. And I learned from you about, you know, the final ruling on the No Surprises Act.
Steven Newmark 18:07
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 18:18
And who knows, whatever you’re sharing may be included in our listener feedback portion of future episodes.
Steven Newmark 18:26
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 18:30
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts. And definitely hit that subscribe button wherever you listen so you never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 18:48
I’m Steven Newmark. We’ll see you next time.
Narrator 18:54
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 11- Methotrexate: Pharmacists Caught in The Middle
The Supreme Court’s decision, making abortion illegal, is causing confusion amongst pharmacists who prescribe methotrexate, a drug used to treat certain diseases but also to end ectopic pregnancies. In this episode, we hear the pharmacists role in helping patients retain wide access to this drug.
“Any health care professional’s first duty is to the patient, and they should do whatever it takes to assist that patient, either themselves or by referring to someone else who can help,” says Dr. Donald Miller, Professor of Pharmacy Practice at North Dakota State University and former member of the FDA’s Arthritis Advisory Committee.


S4, Ep 11- Methotrexate: Pharmacists Caught in The Middle
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Donald Miller 00:06
Any healthcare professional’s first duty is to the patient and they should do whatever it takes to assist that patient, either themselves or by referring to someone else who can help.
Steven Newmark 00:22
Welcome to The Health Advocates, a podcast that breaks down the 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 00:32
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. But before we get started, I want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:50
We sure do. As a reminder, you can check all of our podcasts out at ghlf.org/listen. This week, we’ll give a shout out to the podcast called Thriving While Aching. It’s hosted by clinical psychologist Laurie Ferguson and it really just showcases the stories of older adults doing what they love despite aches and pains.
Steven Newmark 01:10
That sounds like my life. So it’s great that Laurie is doing that.
Zoe Rothblatt 01:13
Okay, let’s start with a listener comment. Ready?
Steven Newmark 01:16
I am ready.
Zoe Rothblatt 01:17
This one is from Jack N, who wrote, “I enjoy tuning in weekly to learn from you.” Thank you so much.
Steven Newmark 01:23
Today we have a special guest with us Dr. Donald Miller, Professor of Pharmacy Practice at North Dakota State University and former member of the FDA’s Arthritis Advisory Committee, and he’s here to talk to us about how pharmacists play a role in patient advocacy and share thoughts on the methotrexate access issue that we’ve been discussing.
Zoe Rothblatt 01:42
But first, we do have a few news updates. There was a lot of COVID related stuff this week. Perhaps the biggest one is that the CDC loosened the COVID guidance.
Steven Newmark 01:51
The CDC estimates that 95% of Americans ages 16 and older have acquired some level of immunity either from being vaccinated or infected. And as such they have loosened the recommendations.
Zoe Rothblatt 02:03
Yeah, there’s five big points. The first one is test to stay is no longer recommended in schools. This was used by schools to allow students who were in close contact with a person who had COVID to continue to attend in person as long as they’ve been testing negative and asymptomatic.
Steven Newmark 02:20
It sounds almost like it’s more akin to traditional illness such as a flu or a cold. The new guidelines say stay home for five days, followed by five days of masking on return. You know, the significant change here is that the last set of guidelines suggested that schools required the test. The guidelines continue to suggest the use of a test based strategy if masking is not possible.
Zoe Rothblatt 02:39
And I think in general, this updated guidance shows that, you know, it’s really focused on the individual now as we continue to live with COVID. The second point here is that unvaccinated people no longer have to quarantine if they were exposed to someone with COVID.
Steven Newmark 02:55
I guess I wouldn’t even say selfish, I would be of the mindset that, hey, if somebody in your family has the flu, I would kind of prefer you stay home, frankly, then come to my office. And if you are going to come to my office, I kind of would prefer you wear an N95 mask, while you’re here. I also do understand that that has not been what we have done with other viruses ever. So we’re sort of falling back.
Zoe Rothblatt 03:17
You know, it’s important to note the third point here is isolation is still recommended for people with COVID. So what we’re just talking about is exposure. But if you test positive, you still do need to isolate for at least five days.
Steven Newmark 03:30
Absolutely. And again, comparing it to flu, I would hope the same is true if someone gets the flu.
Zoe Rothblatt 03:34
Yeah, rest lots of fluids. Stay home.
Steven Newmark 03:37
And stay the heck away from me.
Zoe Rothblatt 03:39
Yeah. Stay away from our immunocompromised community, please.
Steven Newmark 03:43
Yes.
Zoe Rothblatt 03:43
Respect us.
Steven Newmark 03:44
Yes. Well, back to testing people with COVID, the CDC now says you need two negative tests within 48 hours, if you have had COVID and are isolating before going back out in public. Two negative tests within 48 hours.
Zoe Rothblatt 03:58
And then the last part of this is the CDC, I guess dropped the six foot standard. They’re making social distancing less of a priority now as we move forward.
Steven Newmark 04:07
Which makes sense. I am a little embarrassed. I didn’t even realize we were still doing this six foot standard. I thought it was reduced at some point to three feet. I thought I remember reading that.
Zoe Rothblatt 04:16
No, I think that was last summer, I remember.
Steven Newmark 04:19
We’ve said it before on our podcast, it’s up to yourself as an individual to stay as protected as you can, which puts the onus on you to wear the proper mask and make sure it fits properly and all of that. What I find tough about this is when I’m out in public in an indoor setting on mass transit, I am wearing an N95 mask at all times. But there’s a part of me that wants to sort of take a breath, like pull the mask down and take a breather here and there as is the norm when you have these masks. And I feel very uncomfortable even taking that breath because very few people are in masks anymore. I would feel more comfortable if everyone was wearing a cloth mask or one of those disposable. I feel like at least there’s some level of protection from the virus from something leaving that individuals nose or mouth by having some kind of covering there. And I could allow myself to take a breath here and there.
Zoe Rothblatt 05:10
I think you just summed up pretty well like how a lot of our community is feeling like just very alone in it and not like it’s the community is in it together, maybe the chronic illness community is in it together. But the community at large is sort of ignoring the needs of people who are high risk. And while I will say that your COVID in 2022 is very different than COVID in 2020, and we know a lot and we have vaccines, we have protection, it still is scary for our community.
Steven Newmark 05:38
I will say one positive thing that I find. I know it depends on where you live in this country. I have found that wearing a mask, I don’t see anyone giving me the side eye, anyone shaming me, anyone looking askance because of the mask.
Zoe Rothblatt 05:54
Yeah, I’ll tell our listeners, I recently moved to Tennessee. And I feel like I’m one in five people that wears a mask here. And while I don’t get mask shamed at all, I definitely do get some side glances like, “Whoa, you’re still wearing that thing?” And it definitely is different than New York City where I think more people are in masks. It’s definitely dropped down. But here especially I’m like one of the only people and it almost feels embarrassing at times, like, “Oh, why am I still doing this? I’m the sick kid.” And I just have to remind myself why I’m doing it and that I’m staying safe and protecting myself and I don’t want to catch COVID just because I want to get groceries. Like it’s very simple to just keep myself safe. Going back to some of the guidance, the CDC recommended two negative tests, I saw that the FDA had actually recently recommended to do three take home tests if you’re exposed to COVID.
Steven Newmark 06:48
Previously, the FDA had advised taking to rapid antigen tests over two or three days to relent infection, but now they’re saying three. They say new studies suggest that just two tests can miss many infections and result in a spread to others. So adding a third test will improve accuracy.
Zoe Rothblatt 07:03
And then our last round of COVID news, the FDA accelerated the release of the next round a COVID boosters.
Steven Newmark 07:10
These are going to be distributed in September, and the new shots are being reformulated to include components of the Omicron strains BA.4 and BA.5.
Zoe Rothblatt 07:18
I’m curious to see how the CDC updates its vaccine guidance. What shot is this considered? And is it considered different than the others? I’m curious to see how it goes because many in our community just got a fifth COVID shot.
Steven Newmark 07:33
It should be noted that this vaccine also includes the original strain, in addition to the Omicron strains. The thing that I’m curious about because there’s so much less testing going on now, public testing at least, I can’t figure out how prevalent BA.4 and BA.5 are.
Zoe Rothblatt 07:48
Totally, because so many people also just do the at home test and then they’ll just stay home with a mild infection and do what they need to do. But it’s not reported. Many people are just not testing at all if it’s so mild.
Steven Newmark 08:06
For now we turn to our special guest here with us today, Dr. Donald Miller. He’s a Professor of Pharmacy Practice at North Dakota State University and former member of the FDA Arthritis Committee.
Zoe Rothblatt 08:17
Welcome Dr. Miller. Thank you for joining The Health Advocates.
Dr. Donald Miller 08:20
Hi, thanks for having me.
Steven Newmark 08:21
We’ve been working a lot, Zoe and I and our colleagues at GHLF regarding the methotrexate access issue in the wake of the Dobbs Supreme Court decision. How are pharmacists handling the this access issue? And what have you been hearing generally?
Dr. Donald Miller 08:36
It’s a very important question. First, I think pharmacists were really confused about what to do if they lived in a state that was banning abortion. The problem has really come around methotrexate, because that is listed by some states as a drug that’s used for abortion. It’s a bit of a misnomer because it’s not used for a typical abortion or a medication abortion. It is used sometimes in ectopic pregnancy, An ectopic pregnancy, by definition has not viable, will threaten the life of the mother, and has to be removed so it’s not done by surgery, it’s done by medication. So that is really a drug that should have an exception for abortion. But nonetheless, obviously, many people are afraid of getting accused of being involved in abortion and getting being afraid of going to jail, given the accusation could be fairly devastating. So a lot of pharmacists are very careful and at first were turning down prescriptions for methotrexate altogether. Most methotrexate is for rheumatoid arthritis and other rheumatic diseases. So if a pharmacist knows the patient or knows the prescriber it should not ever be an issue. I can see if a brand new patient or if a different doctor came in with a prescription then the pharmacist would have to ask questions, clarify appropriateness, that’s perfectly okay. But in fact, if it was being pushed to ectopic pregnancy, and then that actually should be okay to again, the legal environment has to get sorted out here. There are two important issues. One is the pharmacist, of course, can turn down a prescription. They can do that, because the prescription is inappropriate, or they can do it because they’re cautious to do that. So you know, so pharmacists don’t want to prescribe morning after pills like Plan B. So that’s fine. If a pharmacist is declining because of their own cautions, then they need to make arrangements for another pharmacist to fill that prescription either in their pharmacy or a different pharmacy. But at the same time, they have an obligation to the patient. So again, if they want to decline, and yes the prescription is appropriate, they have an obligation to help the patient.
Zoe Rothblatt 10:45
In a scenario like this where a patient is having trouble accessing their medication, whether it be this methotrexate issue or all the time there’s different barriers that are you know, stopping patients from accessing their treatment, whether it’s insurance barriers, shortages, what types of actions can pharmacists take to help patients in scenarios like those?
Dr. Donald Miller 11:03
You mentioned insurance access, that’s a huge issue and time consuming for pharmacists. Both physicians and pharmacists will spend a lot of time trying to navigate insurance. There are many issues with something not being covered, or insurance companies may require a patient to fail other medications before they can get a more expensive drug. It’s inconvenient for the pharmacist but any health care professional’s first duty is to the patient, and they should do whatever it takes to assist that patient either themselves, or by referring to someone else who can help in a better way.
Steven Newmark 11:39
Can you tell us about any action that pharmacists can take to help patients become better advocates themselves?
Dr. Donald Miller 11:45
When you say advocacy, I think of legislative advocacy, which something also I’ve been involved in. Here is an issue where I think patients and healthcare professionals need to get involved, particularly right now with state legislators, where states are banning abortion or have similar restrictions. It needs to be clarified that there are some safe harbors for prescribing medicines like methotrexate, so that’s going to happen naturally. But I think if pharmacists and health professionals in particular can be very helpful to state legislators to say, here’s some ideas for how you can clarify things give us some legal safe harbor and yet, you know, maintain some restrictions.
Zoe Rothblatt 12:26
Switching gears a little bit. You’re a former member of the FDA Arthritis Advisory Committee, could you tell us about what that committee does, why it’s in place, and you know, what your role has been as part of it?
Dr. Donald Miller 12:38
By law, the FDA has a number of advisory committees in different therapeutic areas, that they’ll convene when they’re considering a new drug application or a change in a new drug application that is not straightforward. The FDA is not monolithic. And then there are many people involved in making a drug approval decision. It’s very clear when you’re on the advisory committee, that sometimes there’s arguments within the FDA whether to approve or not approve, the kind of labeling would go along with that. So when an advisory committee is convened, it’s usually a day long meeting. The drug manufacturer typically will present their case first, they’ll give all the evidence they can saying, “Yes, you should approve this medication.” Then the FDA will kind of give their point of view. And they’ll point out any concerns they have about either safety or efficacy. There’s always a time for any interested party like patients to make comments. And then there’ll be just an open discussion on the issues and that’ll be finalized eventually, with a vote for approval. The FDA usually follows the advisory committee, especially if it’s sort of a slam dunk decision. But sometimes even the advisory committee can be conflicted, you know, if it’s a seven to six vote in favor or against approval, doesn’t necessarily give the FDA clear indication. But even if the vote is pretty clear, I found that the FDA convenes these meetings to get opinions and the FDA staff, of course, are not an act of practice anymore. And so when you have practitioners on that advisory panel that can say, “Well, in my experience, this is what I think might happen, how the drug might be used.” And that really gives the FDA a lot more insight into whether to approve, and also the conditions of approval and the labeling that would go along with that.
Zoe Rothblatt 14:29
You mentioned that patients are invited to speak up during these meetings. What’s it like hearing from a patient? How does it differ than hearing from the other stakeholders and do you think that the patient voice does make a difference?
Dr. Donald Miller 14:41
It’s good to get the patient’s point of view. Unfortunately, what usually happens is the drug manufacturer will kind of invite people to speak and pay their expenses to come to the FDA meeting. Those patients are often people who are in the clinical trials, and had a good response. Personally, I always take those patient comments with a grain of salt, because they’re just a little bit biased. But again, as I say, getting patients unique opinions about what the drug did for them and so on is helpful. So mostly consider the scientific evidence, but the patient’s opinion also is useful.
Steven Newmark 15:18
This is great information for patients to learn about becoming better advocates and different avenues where patients can advocate such as at the FDA. I know it’s something that both Zoe and I have done on behalf of patients through our work here at GHLF. Also, it’s great talking to you to hear about the work that you’re doing on the methotrexate access issue and what you’re hearing from fellow pharmacists. It has been invaluable for us to have this conversation. So thank you for your time.
Zoe Rothblatt 15:43
Thank you so much for joining us and giving an insight into you know, behind the scenes at the FDA and what pharmacists are talking about.
Dr. Donald Miller 15:50
Well, thank you very much.
Zoe Rothblatt 15:51
Okay, Steven, that brings us to the close of our show. What did you learn about today?
Steven Newmark 15:55
I learned from Dr. Miller the importance of pharmacists in patient advocacy and the unique role that pharmacists can play in the healthcare ecosystem.
Zoe Rothblatt 16:04
And I learned from you about the removal of the test to stay strategies in schools as kids go back to school.
Steven Newmark 16:13
Well, we hope that you learn something too. We’d love to hear from you what you’re dealing with as the CDC guidance changes. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:26
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 16:33
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 16:38
Thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen so you never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 16:54
I’m Steven Newmark. We’ll see you next time.
Narrator 17:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 10- Add to the Outbreaks: Polio
Polio is the latest disease to make a comeback. One case in New York and traces of it found in London and Jerusalem have health advocates sounding an alarm of polio’s potential spreading with a renewed look at the vaccine’s effectiveness.
“It’s worrisome that polio can come back. It’s worrisome that there may be folks in this day-and-age of vaccine hesitancy and anti-vaxxing that may refrain from giving their children the polio vaccine. That’s how viruses come back,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.


S4, Ep 10- Add to the Outbreaks: Polio
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:06
It’s worrisome that polio can come back. It’s worrisome that there may be folks in this day and age of vaccine hesitancy and anti vaxxing that may refrain from giving their children the polio vaccine. That’s how viruses come back. 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 00:34
And I’m Zoe Rothblatt, Associate Director of Community Outreach.
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:51
We sure do and you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Talking Head Pain, a podcast for people living with headache and migraine and their caregivers as well. Definitely listen in as Joe speaks to migraine advocates about their experiences
Steven Newmark 01:09
Love this podcast and I love Joe.
Zoe Rothblatt 01:10
So let’s give another shout out. Are you ready for listener comment?
Steven Newmark 01:14
I am ready.
Zoe Rothblatt 01:15
This one is from Lynn, who wrote, “This podcast is super interesting and just the right length.”
Steven Newmark 01:20
Well, thank you, Lynn.
Zoe Rothblatt 01:21
Perhaps the biggest news of the week is that the Senate passes the bill focused on climate change, tax, and healthcare so that we could dive into what this means for health care.
Steven Newmark 01:32
Originally, this was the Build Back Better legislation that we’ve spoken about in past podcasts. That legislation we thought was dead in the water. However, it seems to have been revitalized and came back in a new form. Is Frankenstein a good example? Who is the one that dies and never comes back? It’s a few of them, right?
Zoe Rothblatt 01:50
Yeah.
Steven Newmark 01:51
Zombie legislation. That’s what it is, zombie legislation. It has reappeared as Inflation Reduction Act of 2022.
Zoe Rothblatt 02:03
Although it’s scaled down, it is how progress is made in Washington. I feel like we talk about this a lot, that progress is slow, and it often involves a lot of compromise. So it’s still good, even though it’s scaled back.
Steven Newmark 02:15
Absolutely.
Zoe Rothblatt 02:16
So the first big thing is negotiating prices. So for the first time, Medicare would be allowed to negotiate with drug makers on the price of prescription drugs. And this is projected to save the federal government billions of dollars. But hopefully this is going to help bring down the cost of health care for patients.
Steven Newmark 02:34
And the savings will go to Medicare, it would apply to 10 drugs initially beginning in 2026, and then expand to include more drugs in the following year. It should be noted that the Congressional Budget Office as well as opponents of this provision have said that this plan would stifle innovation and the development of new drugs.
Zoe Rothblatt 02:51
From my perspective, it’s good to have some change, because we hear from patients all the time on Medicare about how the system isn’t working for them. So I’m excited to see some sort of change coming out of this. Another thing to look forward to in the coming years effective in 2025, there’s going to be a cap on out of pocket costs that seniors pay annually for prescription so that’ll be capped at $2,000. And the bill will also ensure that seniors have free access to vaccines.
Steven Newmark 03:16
There’s also a cap on insulin. When the bill was originally reproposed, there was a $35 cap on insulin for all patients. However, in the final stages of the vote, the $35 cap was removed for patients on private insurance but does remain for Medicare patients. Again, we, and I say we are referring to GHLF, we are very optimistic about this portion of the bill. The $35 cap for insulin is great, we would have liked to have seen it for all patients. But again, now we’ve sort of moved the goalposts and said, “Okay, we got the $35 cap for Medicare patients. Now let’s keep going and get it for private insurance patients.”
Zoe Rothblatt 03:52
And then the last piece of this is the subsidies so the legislation broadens the subsidies available under the Affordable Care Act for another three years.
Steven Newmark 04:01
Which is great, because a few weeks ago, the government announced that they are the lowest percentage of uninsured Americans anytime over the last 50 years. So it’s great to see that more and more Americans are obtaining insurance, which is always the first stopgap measure in healthcare.
Zoe Rothblatt 04:15
And for our community that relies so heavily on insurance to help get access to doctors, this is good news that it will be more affordable.
Steven Newmark 04:25
Some other good news is the Novavax COVID-19 vaccine has had its rollout. It’s off to a slow start, unfortunately, but it is out there. As a reminder, the Novavax COVID vaccine got emergency use authorization last month.
Zoe Rothblatt 04:38
So with this slow rollout, I want to look at the numbers of it. And I saw that there’s more than 26 million American adults who remain unvaccinated. And you know, we’re hoping that this Novavax vaccine could have been appealing to this group because it’s different than the other ones out there, but only 7300 doses have been administered to Americans, which is pretty small.
Steven Newmark 05:01
Some reasons for the slow start include the vaccines weren’t immediately available after the authorization. And so there may have been some reporting delays. The vaccine also has not been widely available. They’re just 385 sites initially that were offering the Novavax vaccine. Hopefully that number is starting to tick up. It’s now offered at almost 1000 sites around the country. So hopefully, we’ll see some progress. You know, as we’ve spoken about before, the window of folks who are unvaccinated but willing to take the Novavax vaccine rather than the mRNA, it was a small slice. So most of those unvaccinated are unvaccinated for other reasons.
Zoe Rothblatt 05:35
I guess the good news buried in all this is that the numbers are going up of its availability. So hopefully we’ll see vaccination rates go up too.
Steven Newmark 05:48
Other news, health officials in New York State have discovered a case of polio in an adult. The first case in the United States since 2013.
Zoe Rothblatt 05:56
This was jarring, you know, we have COVID, we have monkeypox. Now we’re talking about polio. Let’s dive into this. What’s happening and what do we know?
Steven Newmark 06:04
Polio is an infectious disease caused by a virus that can spread from person to person and cause paralysis.
Zoe Rothblatt 06:10
What’s interesting about it is most people who get infected don’t have any visible symptoms, like one out of four people have flu like symptoms, and then a smaller proportion will have this more serious symptoms that affect the brain and spinal cord. And it’s when you don’t catch it because you’re not having symptoms is that then it becomes a problem.
Steven Newmark 06:28
So let’s talk about what’s happening with polio. Earlier this summer, British health authorities announced that they found evidence suggesting local spread of polio in London, and it should be noted that the country was declared polio free in 2003.
Zoe Rothblatt 06:40
In this instance, no one had turned up sick. The proof just came from routine tests of sewage samples. These are routine tests, we’re doing them with COVID now. We test the water and they can just alert health officials that a virus is circulating and allow them to intervene quicker in a more preventative way. What happened in London when they found this is that they reached out to families with young kids to make sure they’re vaccinated as a preventative measure.
Steven Newmark 07:04
Now things are a bit different here in the United States. A young man in Rockland County in New York sought medical treatment for weakness and paralysis in June. By the time the tests confirmed he had polio nearly a month had passed. After this case appeared, New York state health officials started testing wastewater samples from Rockland County and surrounding counties to help determine if the virus is spreading elsewhere.
Zoe Rothblatt 07:25
I was wondering why did it take this man having to come in. But since polio has for the most part been eradicated, it’s like the cost outweighs the benefit of testing the waters because we have such high vaccination rates and the risk of spreading disease is really low. So we’ve been testing for other diseases like COVID, but not necessarily polio.
Steven Newmark 07:46
So wasn’t polio eradicated?
Zoe Rothblatt 07:48
Yeah, in 1988, we had a huge effort to eradicate polio. This was a Global Polio Eradication Initiative. And it really focused on vaccination. We have to get vaccines into people and also surveillance around the world, see where it’s traveling, test the waters, stuff like that. And it was a really, really successful campaign. Polio is more or less been eradicated across the globe. It remains in impoverished countries that struggle with vaccination rates and clean water. So you’ll most commonly you’ll hear about polio in Afghanistan or Pakistan, but for the most part, we’ve really gotten rid of it. So you know, that begs the question, how did it come back?
Steven Newmark 08:26
I guess it just speaks to the idea as much as you can eradicate a disease if you don’t stay vigilant, if you don’t keep up with the vaccinations, and if you’re not so robust in a worldwide vaccination effort, there is always a risk of it returning. And in this particular instance, we don’t know what happened with this individual. We do know that this particular person had traveled extensively, but we don’t know the specifics of this case. So we’re still trying to learn what’s going on here and what’s going on elsewhere. I just want to pause here and say that most adults and I’m talking well, north of 90% of adults do not need to worry about polio. It’s not something to worry about. If you have been vaccinated, you are fine. If by chance you happen to be traveling to a country that potentially might have cases such as Afghanistan or Pakistan, talk to your doctor, although you’re probably going to want to talk to your doctor about other viruses that might be circulating there as well. But in the United States, if you have been vaccinated, there really is no cause to worry, it’s worrisome that polio can come back. It’s worrisome that there may be folks in this day and age of vaccine hesitancy and anti vaxxing that may refrain from giving their children the polio vaccine. That’s how viruses come back. It is like a zombie can’t just sit back and let it die, You have to stay on top of it.
Zoe Rothblatt 09:42
It’s comforting what you said that most people don’t need to worry because most children have been vaccinated by the age of two. I actually checked my vaccine records to double check that I have and I have which felt good so you know, if you’re worried just double check your records. You can also continue handwashing, the mitigation efforts that we’ve already been doing. Keep up with them and practice, you know, social hygiene to keep yourself safe. But there’s really should be very little worry when it comes to polio.
Steven Newmark 10:09
And I have to say, the polio vaccine is one of the great success stories. There were two doctors who developed them separately, Dr. Sabin and more famously, Dr. Jonas Salk. He never got rich off the polio vaccine. He worked diligently, created the vaccine, did a world of wonder for public health, which is really fantastic. And also I should mention, pharmaceutical companies got together and they worked in tandem to produce and distribute these vaccines.
Zoe Rothblatt 10:33
You walk into public health school, and this is one of the first things that they bring up is how successful of a public health campaign this is. Let’s model campaigns after this because it has been such a success. So when we think what’s there to worry about? Not much. One last thought I was thinking about how Polio is so visible, if you do get the impact, or you’re paralyzed from it, as opposed to COVID, which really isn’t visible. And I think there’s such a component there with encouraging people to get the vaccine and protect against this. Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 11:05
You know, I learned about the recurrence of polio and how scary it is that diseases that we thought had been eradicated or nearly eradicated can come back.
Zoe Rothblatt 11:13
And I learned from you at the top of the episode about you know, the new health care bill that’s hopefully going to pass.
Steven Newmark 11:21
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] or better yet, include a short video or audio clip.
Zoe Rothblatt 11:31
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 11:38
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 11:43
Well, everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts. And hit that subscribe button wherever you listen so you never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 12:00
I’m Steven Newmark. We’ll see you next time.
Narrator 12:05
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 9- Health Without Borders: Advocating for Rheumatoid Arthritis in the UK
For people living with rheumatoid arthritis, knowledge is power, whether it’s here in the United States or around the world. In this episode, learn what a leading health advocate in the UK is doing to serve 450,000 adults living with RA and 12,000 children with juvenile rheumatoid arthritis.
“Everything we do is about giving the individual living with inflammatory arthritis as much knowledge and as many tools for them to understand their condition,” says Clare Jacklin, CEO at National Rheumatoid Arthritis Society in the United Kingdom.


S4, Ep 9- Health Without Borders: Advocating for Rheumatoid Arthritis in the UK
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Clare Jacklin 00:09
I think the key thing about being an advocate for yourself is really to have the knowledge and knowledge is power.
Steven Newmark 00:19
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 00:28
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:32
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:46
We sure do. And you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Getting Clear On Psoriasis. It is Psoriasis Awareness Month, and this podcast can really help you feel less alone as you hear from experts who treat it and patients who live with psoriasis as well. Alright Steven, let’s start with a listener comment as we always do. Are you ready?
Steven Newmark 01:08
I am ready.
Zoe Rothblatt 01:09
This one came from Amy D., who wrote, “Great podcast, keep up the really helpful work. You are my go to source for excellent and current info.”
Steven Newmark 01:18
Well, thank you, Amy. That’s always great to hear. And we’ll keep doing what we’re doing and you guys keep doing what you’re doing.
Zoe Rothblatt 01:24
We have a special guest here with us today, Clare Jacklin, who is the CEO at National Rheumatoid Arthritis Society. And she’s here today to talk to us about her work with advocating for rheumatology patients. We certainly look forward to that conversation. But first we have a few news updates.
Steven Newmark 01:40
The US government is working to increase access to evusheld.
Zoe Rothblatt 01:44
As a reminder, evusheld is the preventative COVID treatment to help protect immunocompromised individuals against COVID. And this is really important because some people in the immunocompromised community haven’t amounted full response to the vaccine. So to be able to have another layer of protection has really helped our community feel more safe.
Steven Newmark 02:03
Evusheld will be available through a subset of federal pharmacy partners as well as individual health care providers who will be able to order smaller amounts.
Zoe Rothblatt 02:11
I also saw that they’re setting up a toll free number for doctors, healthcare providers to get information about the treatment, including how to order it. This is so important because when we did our quick poll, when we asked about evusheld it became clear that many patients were just on a waiting list or waiting to hear information from their doctor. So now for providers have more access to information that will hopefully help patients get that information too.
Steven Newmark 02:37
In other news, President Biden tested positive for a rebound case of COVID-19 after being treated with paxlovid.
Zoe Rothblatt 02:43
Paxlovid is the antiviral treatment. So as opposed to what we were just hanging out, this is something you take once you have COVID. From what I understand, a rebound case is when you test positive after the round of paxlovid. And some cases can be asymptomatic and other times your symptoms actually return.
Steven Newmark 03:01
Experts are looking into why this happens, whether it has to do with the Omicron variant or if there are little pockets of COVID that managed to survive the treatment and then they start replicating again.
Zoe Rothblatt 03:10
I guess the most important part of this as advocates is that there’s new guidance issued by the CDC which is really about isolation periods and masking. So they say if you have a rebound case you should isolate for another five days and after that if your fever and symptoms are gone, you can come out of isolation but you should still wear a mask for 10 days after your symptoms come back.
Steven Newmark 03:34
As we mentioned, this week we have a special guests here with us, Clare Jacklin, who is the CEO at the National Rheumatoid Arthritis Society in the UK. Welcome to The Health Advocates, Clare.
Clare Jacklin 03:44
Delighted to be here. Thanks very much for inviting me.
Zoe Rothblatt 03:47
Welcome, Clare. We’re so excited to have you on.
Steven Newmark 03:49
So Clare, tell us about your organization, the patients you serve and your role as CEO.
Clare Jacklin 03:55
We call it NRAS for short, National Rheumatoid Arthritis Society. We’re the only patient organization in the United Kingdom that focuses specifically on rheumatoid arthritis. And in more recent years, also juvenile idiopathic arthritis. I know in the States, you tend to call it juvenile rheumatoid arthritis. But here we say juvenile idiopathic arthritis. And the organization, NRAS, was founded 21 years ago. So we’re 21 years old this year, we’re having a little bit of a do to celebrate. And the reason the organization was set up was because there was no other organization that really understood the real difference between rheumatoid arthritis and the more general form of arthritis, which of course is osteo. And this is the most common form of inflammatory arthritis, which many of your listeners will know. And it was really important that we had that specific focus. So we serve about 450,000 adults in the United Kingdom with RA and there’s about 12,000 Children living with JIA. I joined the organization over 15 years ago as the Volunteer Manager and have steadily worked my way up to the lofty heights of Chief Exec. And I took over from the founder of the organization back in July 2019, just in time for the pandemic. So wasn’t I the lucky girl.
Steven Newmark 05:21
Good timing.
Zoe Rothblatt 05:22
15 years, that’s really amazing that you’ve been helping patients for so long. I wanted to ask how things have changed for rheumatology patients in your area over the course of these years, like whether it’s access and accessibility to healthcare, your early diagnosis, is there a trend that you’ve noticed in your time?
Clare Jacklin 05:41
Well, certainly things have changed, you know, that is the one thing we can all rely on is change. And of course, when the organization first started, we didn’t have Twitter, and Facebook, and all these things. The way we were communicating with people back then was very, very different. And that was not just through the patient organization’s communication with people, but also the health system. And so over the recent years, there’s been a huge change in how patients interact with their health care professionals. When it comes to how things have changed with the treatment of rheumatoid arthritis, when the charity was first started it was because the catalyst of these new medicines coming to market called the biologics. And of course, over those subsequent years, there have been far more new innovative medicines coming to market. And that, of course, has a massive impact on the quality of life. Talking to many of our medical advisors, they said when they first started in rheumatology, they suddenly became experts in wheelchairs, and makes of wheelchairs. That is no longer the case. Any young consultant or any new registrar in rheumatology, probably are not seeing as many patients in wheelchairs anymore, thank heavens, because of all the innovation in medicines and the treatments, and the understanding of inflammatory arthritis as well. So huge amounts change going on. And we’ve been working very much behind the scenes as well, as well as that face to face interaction with patients. We also do a lot of advocacy and campaigning to ensure that people have the best access to the best treatment at the right place and the right time.
Steven Newmark 07:30
Clare, we first met you at EULAR, which is the European Conference on rheumatology. Can you talk to us about why these meetings matter to you and to NRAS and what it’s like working with other stakeholders and coming together?
Clare Jacklin 07:42
Well, I think it is like in any area of work or industry, learning from your counterparts in different parts of the world, and seeing how things are done, and being able to bring that back to your own country. But also learning a great deal about the science, what’s the advances that are being made. I remember when I first went to my very first EULAR, I was just amazed by the scale of rheumatology, generally. But back then nobody, nobody was daring to talk about potential cures, or getting more and more patients into remission, it was very much about talking about managing the condition. Now, the difference in those intervening years is that we are hopefully looking at, you know, that the science and the research that’s coming through, that is shared at EULAR really is being optimistic about potentially within our lifetimes, we will see cures. We certainly will be able to see far more people with rheumatic diseases having a far better quality of life. And it’s that interaction of sharing of experiences, and the science and the research that is really going to make that happen. And its health without borders really is what it’s all about. And working with the other patient organizations, building really firm friendships between ourselves and my counterpart in Germany and Belgium, in the Netherlands, and Ireland and Canada. And these are really helpful. And while we might not come up with all the answers, it’s still supportive to know that we’re not alone in our own countries dealing with these issues, that they’re similar issues. And of course, we’re stronger together when we can combine our voices on a global scale. That really makes a big difference.
Steven Newmark 09:33
Absolutely.
Zoe Rothblatt 09:34
For sure. I love that you said you know, we’re not alone. we’re in it together, especially as a patient community. It’s so important to lean on each other for support. I wanted to ask you, trickling down from working with stakeholders, how do you bring this information to patients and advocate on behalf of patients with rheumatoid arthritis?
Clare Jacklin 09:53
We’re constantly keeping our website and our information up to date. So what we learn at EULAR and on these global platforms, we bring back and we share through disseminating it through our website, through our online broadcasts a bit like this, we do Facebook Lives. But also in our magazine as well. So that we’re keeping people living with rheumatoid arthritis and JIA up to date with what’s happening. Now, that gives real hope for optimism for the future as well. Because even those people that think, “Well, this may not make a difference to me and my condition, but if somebody in my family develops this in the future, how much better things are going to be?” And I think it really encourages people to think about getting involved in research, by participating in something going on now, so clinical trial, or whatever, will make a difference, as I said, not necessarily to them, but maybe to future generations. And I think generally, most people really want to do that. And that’s how we try to gage our beneficiaries in the work that we do. And of course, then we also by that sharing of experiences that we hear at EULAR, when we’re advocating and campaigning for our UK beneficiaries, we can actually say, “Look, we’re falling well behind France, or Germany or Denmark, if they can do it there, why can’t we do it here in the UK?” People are people regardless of where they live, so why should they be restricted to what they can access, what medicines may be available in this country compared to another country, etc. So it gives us a much stronger voice, when we have that information that we’ve gathered through that coming together.
Steven Newmark 11:39
Can you tell us how you empower patients to be advocates in the UK?
Clare Jacklin 11:43
Well, I think the key thing about being an advocate for yourself is really to have the knowledge and knowledge is power. If we were a stick a rock or a candy with riding through the middle, it would have self management written right through NRAS. Everything we do is about giving the individual living with inflammatory arthritis as much knowledge and as many tools for them to understand their condition, have that better dialogue with their clinicians, and also feel that they can ask for more. They deserve more. They shouldn’t settle for that’s as good as it gets, it can be better, and really to push those boundaries and by them knowing what’s acceptable, and what are their rights within their workplace, perhaps as well as in their health care gives them confidence to say it’s not just about me, this is about everybody living with these conditions. So I will stand up for myself. And I think it’s having that knowledge and understanding of their condition mean able to better self manage does help them to be their own advocates and to be their flag bearers for themselves and for others.
Zoe Rothblatt 12:57
Clare, can you recall a time that that you remember helping a patient be more confident and stand up for themselves?
Clare Jacklin 13:01
When we’ve helped someone and then they phone us back the following week. And they say, “I went back to my GP. And I told them what you told me and now I have an appointment,” and they just feel like I took control. On a population basis, some of the work that we’ve done that has truly made a big difference to individual people’s lives. One example, we were campaigning for about four years alongside the British Society for Rheumatology and another patient organization called Versus Arthritis, for the to be a pediatric rheumatology department unit in Wales. There was a whole country that did not have pediatric rheumatology tertiary center. So young children and their families were having to travel huge amounts of distance to see someone that had that specialist knowledge. So after four years of campaigning to the Welsh Government, we were successful and there was now a pediatric rheumatology team and a growing team based in Cardiff. That has made such a difference not just to the individual child’s life, but to their whole family’s life, because not just the distance but having that specialist care that they can access in a more timely way. And another example of some of the work that we’ve done that has truly moved the needle in care if you like, we worked again with the British Society for Rheumatology to get the threshold for accessing some of these advanced therapies lowered because we had the highest threshold, the highest barrier to cross to get them compared to most of Western Europe. So again, after many years of gathering the data and gathering the evidence, we have now managed to get that lowered, so that people with so called “moderate disease” can actually get onto some of these medications at a much earlier stage of their disease rather than having to wait until things have really got to crisis point and they’re severely affected.
Steven Newmark 15:12
Clare, this is really been illuminating for us here in the United States to hear about the work that you guys do in the UK. And just to learn about the landscape generally. Before we let you go, we do have to ask, what’s the latest with COVID in the UK? Does your community feel safe?
Clare Jacklin 15:27
I wouldn’t say our community feels safe. But we feel safer than we did two years ago. We have had an incredibly successful vaccination program here in the United Kingdom. Anybody that was involved in the global vaccination program should be incredibly proud. It’s the most magnificent advances in medicine at speed. And we will look back on this time and think that was quite a time that we all have lived through. But are we safe? No. There are many people who have autoimmune conditions like RA, that don’t mount a good enough response to the vaccination. So they are still incredibly scared and vulnerable and worried. But I think the majority of people are feeling a lot safer than we did. And I think it’s gotten to the point now where we will need to learn to live with COVID. It’s not going away, won’t disappear. A bit like we learn to live with flu. You know, we have our regular vaccinations every year against flu. I think that’s the direction of travel. And of course, there is still huge advances going on in the fight against COVID. We now have the antivirals. And I know in some countries, we have prophylactic for those who don’t mount a good enough response. We currently don’t have that in the UK, yet. There’s a medication that there’s a campaign to try and get the government to procure. So we hope we will get that. But who knows, because there’s still some concerns about whether that will actually be effective against the current variants of COVID.
Zoe Rothblatt 17:04
Well, overall, it’s great to hear that the community is feeling safer as time goes on. And you know, we hope you and your community and everyone continues to stay safe and healthy. Thank you so much for joining us today.
Steven Newmark 17:18
Yeah, thank you.
Clare Jacklin 17:19
Thank you so much, Zoe. And thank you, Steven. It’s been a real pleasure.
Steven Newmark 17:23
It has. Thank you.
Zoe Rothblatt 17:25
All right, Steven, that brings us to the close of our show. What did you learn about today?
Steven Newmark 17:29
Well, it was more of a reminder this week of how important it is the sense of community that we all have as patients and patient advocates and to really know that we’re not just a national community, but a global community of patients and patient advocates. Really is heartwarming.
Zoe Rothblatt 17:44
100%. I totally agree with that. And I also learned about the advancements in rheumatology and health care that Clare talked about over the past 15 to 20 years and how patients have better access to medications and healthier lives thanks to science.
Steven Newmark 17:59
And makes the advocates like Clare and us. Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip. Also email us if you want to subscribe to our weekly newsletter where we share the top health news of the week.
Zoe Rothblatt 18:20
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, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen so you’ll never miss an episode. I’m Zoe Rothblatt.
Steven Newmark 18:37
I’m Steven Newmark. We’ll see you next time.
Narrator 18:43
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 8- How Worried Should You Be of Monkeypox?
As the World Health Organization declares monkeypox a global health emergency, the U.S. is getting more aggressive, directing states to share data, while another 800,000 doses of the monkeypox vaccine will soon be available nationwide. All this for the rare but potentially serious disease that is caused by the monkeypox virus.
“I think monkeypox is just similar to what we’ve been doing with COVID,” says Zoe Rothblatt, Associate Director of Community Outreach at Global Healthy Living Foundation. “Stay up to date on the spread of virus in your area. The CDC has a map now that you could check out.”


S4, Ep 8- How Worried Should You Be of Monkeypox?
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
I think monkeypox is just similar to what we’ve been doing with COVID. Stay up to date on the spread of virus in your area. The CDC has a map now that you could check out so you know what the spread of monkeypox is in your area.
Steven Newmark 00:24
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 00:34
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:39
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:52
We sure do. As a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Thriving While Aching, one of our newest podcasts that inspires and teaches you how to live a fuller life while safely managing your pain. Alright, let’s start with a listener comment. Ready, Steven?
Steven Newmark 01:11
I am ready.
Zoe Rothblatt 01:12
This one came from Vanessa R., who wrote, “Thank you so much for covering important topics for our community.”
Steven Newmark 01:19
You’re welcome, Vanessa.
Zoe Rothblatt 01:21
Let’s dive into the news. As of this recording, you can now access a fourth COVID shot for those who may be reluctant to have any of the first three we got approved and that’s the Novavax vaccine.
Steven Newmark 01:32
I do know people who have been holding out for the Novavax vaccine. So there is a small segment of our population that is unvaccinated get willing to get vacced woth Novavax.
Zoe Rothblatt 01:45
Well, that’s great news, especially for our community who relies on the people around them being vaccinated for extra protection.
Steven Newmark 01:51
Yes.
Zoe Rothblatt 01:52
And I saw that this vote to authorize this vaccine and recommend it was a 12 to 0 vote. So you know, there’s a lot of support behind it, which is always good.
Steven Newmark 02:02
Absolutely.
Zoe Rothblatt 02:03
Next bit of news, I saw this survey found that public health workers are leaving their jobs.
Steven Newmark 02:09
I’m not surprised.
Zoe Rothblatt 02:10
So here’s the finding, Steven. This was a 2021 survey published this week in the Morbidity and Mortality Weekly Report and it found that over 40% of US healthcare workforce plans to leave their job within the next five years. And then on top of that, 51% said more staff were needed to respond to COVID.
Steven Newmark 02:31
Certainly the spring of 2020, we were all praising healthcare workers. And we asked them to do difficult work, put their lives at danger, respond to tough circumstances. And as the pandemic has waned, it seems as though the public’s appreciation for healthcare workers has also waned, not to mention that health care workers are still left stretched very thin. It was not an easy profession before the pandemic, but they’re still stretched thin. And it’s difficult. You know, you mentioned 40% of the workforce plans to leave their job within the next five years. But number one, a lot of Americans are leaving their jobs, generally. There’s a lot of mobility in the workforce nowadays. So that’s one thing to keep in mind. And also, just because someone says they plan to leave their job in the next five years doesn’t necessarily mean that they’re actually going to do so.
Zoe Rothblatt 03:15
Good point. There’s also a lot of people going into public health now with a newfound interest because the pandemic. So hopefully, there’s a good amount entering this field. I would say that the tricky thing as a public health person myself, the tricky thing about recognizing public health is that so much of the work is focused on prevention. When you think about vaccines, the idea of stopping the spread of disease through vaccines, it’s not spreading, you don’t see it. Public health is also responsible for cleaning the streets, workplace safety, and it’s a lot of being proactive and preventative measures. So you’ll people might not realize the achievements that public health has until they’re gone.
Steven Newmark 03:52
Public health folks are like the people who tell you to wear seatbelts. You know, it’s always tough to prove when you’re doing something in preventive work that the work you’re doing pays off, but it does. Of course, as we know.
Zoe Rothblatt 04:00
I wanted to quickly talk about the struggle that many in our community are having with finances in this current economy. Healthcare is expensive, right, Steven?
Steven Newmark 04:09
It depends where you live, what country. But yes, in our country, it certainly can be.
Zoe Rothblatt 04:13
True. You know, we recently published an article on CreakyJoints with tips for managing your health care costs. These are always helpful but especially right now and I wanted to go through some of the tips and see if you have any of your own.
Steven Newmark 04:26
Absolutely.
Zoe Rothblatt 04:26
Our first is always the most important, review your health insurance policy. You know, make sure your meds are covered. Review what types of plans are better for you. There’s different things like higher premiums, lower deductible or a higher deductible with a health care savings account. So it’s really helpful to sit down and look at some of that, depending on how often you take your medications.
Steven Newmark 04:48
Along the same lines, it’s important to review your benefits pretty closely. Sometimes your benefit plans have more financial benefits than you’re necessarily aware of. Get comfortable learning about how to use your flexible spending account. For example, some health policies provide reimbursement if you belong to a gym and actually prove that you go to the gym, there are other cost savings or other benefits that you may not be aware of.
Zoe Rothblatt 05:10
That’s a great point, I would say take advantage of telehealth, another great benefit and something that got more popular in COVID. Of course can save your time and also save money on gas if you’re traveling pretty far to go to the doctor.
Steven Newmark 05:22
Along those lines about saving on gas or sometimes it saves money, ask for a 90 day prescription rather than a 30 day for example.
Zoe Rothblatt 05:29
If any of our listeners have tips definitely write in to us. But those are just a few and you could check out more at creakyjoints.org.
Steven Newmark 05:38
I think we should also talk about there’s a new global emergency. We’ve talked about it before, monkeypox. For the second time in two years, the World Health Organization, WHO, has declared a global emergency.
Zoe Rothblatt 05:50
It sounds scary. As we look into it and discuss it, it may be less scary than we think it is. When this happened, I just felt like I don’t have the mental capacity to deal with this. Like I’m so emotionally tired from the past few years. I know we say when we talk things out together on this podcast, it really helps to just like allay a lot of those fears. And I’m hoping we could just talk about what we know and don’t know.
Steven Newmark 06:13
First, let’s start at the top. What does it mean to be declared a global emergency?
Zoe Rothblatt 06:17
It’s funny you asked this, because I looked into that because I was like, “Shoot, is this another pandemic?” But it’s actually not, it’s not the same thing as a pandemic. A global emergency, it’s a formal declaration from the World Health Organization of okay, here’s the quote, “An extraordinary event which is determined to constitute a public health risk to other states through international spread of disease and to potentially require a coordinated international response.” So it’s really just a call to action when you think about it.
Steven Newmark 06:48
And as I understand it, it also could unlock funding in global efforts to collaborate on sharing treatment and vaccines, they way we have done in the recent pandemic.
Zoe Rothblatt 06:55
Just a call to action to say that we need to work together because we’re seeing that this is spreading, but it’s not the same as a pandemic. So there’s a bit of relief. We’ve had a bunch of these; Swine 09, Zika, Ebola, and now monkeypox. We’ve had a bunch of these, not all of them have, of course, been as dramatic as the past two years living with COVID. The WHO met around a month ago to look at monkeypox and see if it should be declared a public health emergency. And at that time, they decided no, they met again. So, of course, it’s ongoing. And this committee comes together to bring a lot of experts together to look at the risk internationally and the spread and the risk to human health and decide what to do there on out.
Steven Newmark 07:38
I was actually involved. I was a very small piece of the puzzle when it came to Ebola. I was on a team that dealt with it specifically in New York City government. I remember swine flu. I remember Zika, I was also involved with Zika. Luckily, those never became full fledged pandemics in part, I have to think, folks smarter than you and I, Zoe, got together, the virologist, vaccinologists, epidemiologists to assess all those risks, and to tamp down and minimize the spread of these viruses.
Zoe Rothblatt 08:05
That kind of goes back to the top of the episode with public health successes. Thank goodness those didn’t turn out to a pandemic.
Steven Newmark 08:12
Absolutely. You got to stop it now before it becomes something.
Zoe Rothblatt 08:19
So what do we know so far about monkeypox? It’s most similar to smallpox, which is eradicated through global vaccine efforts in the 1980s. The reason it’s called monkeypox is because it was first discovered in a colony of monkeys used for research in 1958. But that doesn’t mean it originated with those animals. The source of the disease remains unknown, and it was also first detected in humans in 1970. So it’s so easy for us to compare it to COVID because that’s what we’ve been through and COVID-19 was the novel Coronavirus. This we have information about which brings me comfort.
Steven Newmark 08:54
The symptoms include fever, headaches, muscle aches, lack of energy, sounds familiar. You can also see a rash resembling pimples and blisters as well.
Zoe Rothblatt 09:03
I think that’s a key part of the spread, the rash, because the current outbreak is through human to human contact. So you can develop an infection from a droplet from respiratory particles if you spend too much time like face to face or through physical contact. So if somebody has one of those pimples, lesions, if you touch it, it can be exchanged through those bodily fluids, and you can become infected by touching the person or an infected surface.
Steven Newmark 09:29
The good news is that more than 99% of patients can expect to survive. Of course there are special considerations for our community who is immunocompromised and often at risk for serious illness. This is still new, so we will keep you updated as we learn more.
Zoe Rothblatt 09:42
On that note about what you could expect for how severe the illness should be, according to the World Health Organization, for the most part, the virus should just run its course and symptoms should clear up on their own in two to four weeks without the need for treatment. That’s still is like a long time. I’m going to be definitely taking my measures to keep myself safe. One of those measures is the vaccine and Steven, I was wondering if you could talk to us a little bit about what’s going on with this vaccine because I was a bit confused.
Steven Newmark 10:11
A few things I know, first of all, the vaccine itself is 85% effective against the virus. There are two types of vaccines, one of them is in limited supply. So keep an eye out on news when it might be more readily available. And the other vaccine has certain indications that folks with some skin conditions and those with a weakened immune system, so pay pay attention there and people who are pregnant should not be taking this one. The US is working to get additional doses of the vaccine. And the goal is to vaccinate groups where monkeypox is spreading, including in people who’ve been exposed to someone with the virus or simply more at risk. It goes jurisdiction by jurisdiction. Most jurisdictions have limited the availability of the vaccine. Where they even have the vaccine, I believe it’s to gay men who are sexually active. But of course, talk to your doctor for more specifics.
Zoe Rothblatt 10:56
And it’s not a sexually transmitted disease, it’s just that it could be transmitted through bodily fluids. So by nature, the risk of having sex is you know, sharing bodily fluids and putting you at risk. But I just want to make that clear, because that was confusing for me at first.
Steven Newmark 11:13
Right.
Zoe Rothblatt 11:14
What else can we do?
Steven Newmark 11:15
The CDC advises people to be extra cautious when there isn’t a lot of personal space. It sounds kind of obvious, but always be careful when you’re interacting with anyone you don’t know. That’s true for any disease or any virus, you’re always going to want to take extra care and, and precautions in how you interact with people you don’t know.
Zoe Rothblatt 11:32
I think this is just similar to what we’ve been doing with COVID. Stay up to date on the spread of virus in your area. The CDC has a map now that you could check out so you know, similar to how we’ve been doing with the COVID. And look at the county level so you can know what the spread of monkeypox is in your area.
Steven Newmark 11:50
The only weekly update that’s shared publicly on monkeypox vaccines is a weekly update from the US Department of Health and Human Services. They detail how many doses have been distributed to each state. And then as I mentioned, it’s up to each state to determine how they want to make those distributions.
Zoe Rothblatt 12:04
Unfortunately, if you are experiencing symptoms, or you believe you are in contact with someone who has it, you’re supposed to isolate yourself. The WHO is advising for people to isolate for three weeks, which is pretty tremendous and takes a lot of privilege to be able to do that. And then of course, you should reach out to your health care provider to figure out whether he should be tested or vaccinated because I heard you could also get vaccinated shortly after exposure to the virus too. Overall I feel like there’s enough information in place. So we’re not totally in the dark about this.
Steven Newmark 12:37
I’m hesitant to be too optimistic only because there’s just not that many vaccines available. There’s a dearth, I see it in my local community, people who are interested in getting vaccinated are unable to do so. People, even people who are eligible are finding it’s not quite so simple. So like anything else, you see a little fire in the corner, you want to stamp it out before it becomes a big fire and the whole house burns down like COVID. Right now, it’s still a little fire in the corner. It’s growing ever so slightly. And I’m hopeful that I think the majority of the public is like, “Ah, I can that’s gonna go away on its own. If it doesn’t, I don’t care.” But that’s what public health folks do. Folks like us make a little bit of noise. Folks who are epidemiologists do the research, virologist, vaccinologists are doing what they need to do and local public health officials hopefully will obtain enough vaccines and be able to actually stamp it out before the public even raises arms, to be honest. That’s the hope. For sure. And that’s our role as advocates just to advocate for continued access to vaccines, to information, just getting the information out is so important. Well, we hope that was helpful.
Zoe Rothblatt 13:42
For sure. That brings us to the close of our show. Steven, what did you learn today?
Steven Newmark 13:46
I learned from you, Zoe, the difference between a public health emergency, a global public health emergency, and a pandemic, the different levels for getting from one to the other. So thank you for that, Zoe.
Zoe Rothblatt 13:57
Of course, and I learned from you about the vaccine for a monkeypox and what we should be looking out for and who is most at risk.
Steven Newmark 14:05
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 14:16
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 14:23
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 14:28
Well everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts, and definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 14:46
I’m Steven Newmark. We’ll see you next time.
Narrator 14:51
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 7- We Have a Doctor in the House
Each day seems to present new questions about COVID, its variants, and the best vaccines. In this episode, we get clear answers from GHLF’s own Dr. Daniel Hernandez about our risks to contract COVID and whether to wait for a new vaccine to come to market before getting boosted.
“You should get a COVID vaccine even if you have already had COVID. There’s no way to know how long immunity lasts after the infection,” says Dr. Hernandez, Director of Medical Affairs and Hispanic Outreach at Global Healthy Living Foundation. “There are very specific vaccines that are coming out. We have to make sure that we’re up to date with those as well in order to protect ourselves in the best way possible.”


S4, Ep 7- We Have a Doctor in the House
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Daniel Hernandez 00:08
You should get a COVID vaccine even if you have already had COVID. There’s no way to know how long immunity lasts after the infection. There’s very specific vaccines that are coming out. We have to make sure that we’re up to date with those as well in order to protect ourselves in the best way possible.
Steven Newmark 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 Steven Newmark, Director of Policy at Global Healthy Living Foundation.
Zoe Rothblatt 00:37
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:41
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:54
We sure do. And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Wellness Evolution. Don’t forget to check out those Breathing Breaks, with guides on breathing through stress and anxiety. So Steven, let’s start with a listener comment as we always do. Ready?
Steven Newmark 01:12
I am ready.
Zoe Rothblatt 01:13
This one is from David P. who wrote, “I look forward to this weekly show.”
Steven Newmark 01:17
I look forward to it as well, David. Thank you for writing in.
Zoe Rothblatt 01:20
Thank you so much. We do have a special guest here with us today, our colleague, Dr. Daniel Hernandez, who’s here to talk to us about vaccines and what’s going on with the COVID vaccine. And we do look forward to that conversation. But first, we have some news updates. Steven, I know you love these, our GHLF Patient Support Program quick poll results. So this time we asked if immunocompromised people living in our community have got their fifth shot for those who got the mRNA series, that’s Pfizer and Moderna. Interestingly enough, only 25% said yes, that they have got their fifth shot already.
Steven Newmark 01:57
That’s fascinating, because I remember in a prior poll, 78% said they had gotten their fourth shot. So there’s a big drop off between the fourth and fifth.
Zoe Rothblatt 02:04
And in the free response section, we got some answers to that drop off. It became clear that many are worried about the new variants and are waiting for a variant specific vaccine that could maybe be coming this fall. People are also simply just unaware of this recommendation, just learned about it.
Steven Newmark 02:22
This recommendation was sort of tucked away on the CDC’s website. There was no grand announcement by any means. So we’ve got some work to do, because it’s our job at GHLF and at Health Advocates to make sure people know, if you are immunocompromised, you are eligible for a fifth shot. But I do understand the desire to potentially wait for something that is more variant specific.
Zoe Rothblatt 02:40
For sure. And definitely just talk to your doctor about it to figure out what’s right for you.
Steven Newmark 02:45
What else we got in the news this week?
Zoe Rothblatt 02:47
So UnitedHealthcare, the health insurance company, nixes insulin co-pays. They announced that they’ll eliminate out of pocket costs. It’s a little tricky and standard fully insured group plans for certain preferred prescription drugs.
Steven Newmark 03:01
This includes insulin and similar drugs used to treat emergencies such as severe allergic reactions, hypoglycemia, opioid overdoses and acute asthma attacks.
Zoe Rothblatt 03:10
This is huge. Eliminating out of pocket costs just really helps reduce the burden and medical costs, especially when you live with a chronic illness. Insulin is something you need to take regularly. So you’re regularly paying that bill. So to say that it’ll be $0 really does help and encourage patients to be able to refill their medication.
Steven Newmark 03:28
Absolutely. This is great news. We can’t take credit specifically for this. But this is what we do here is we advocate for things such as this. Trying to lower barriers to access, lower costs for patients. And generally speaking, this is something that we have been fighting for for years. So we’re happy to see this announcement.
Zoe Rothblatt 03:44
For sure. I hope to see other insurance companies follow suit. Our last piece of news, I saw that unfortunately kids vaccines are really hard to find in Florida and many parents are struggling to find a place to vaccinate their children.
Steven Newmark 03:58
Not surprising considering Florida was the only state that refused to preorder the vaccines. They also are the only state to prohibit county health departments from distributing or administering the shots. So you essentially have to go to your pediatrician.
Zoe Rothblatt 04:11
And because of that, the waitlist at pediatricians offices are stretched for weeks. Doctors who do have doses are fielding calls from parents miles and miles away who are just trying to find it in somewhere. And I even saw on the news that families are debating road trips to neighboring states to try and get their kids access to the vaccine.
Steven Newmark 04:30
I do wonder if that also has an effect on pediatric practices generally being overburdened with this. Whereas with the other distributions and other states and with adults, the vaccines were given out mostly outside of the realm of primary care doctors. I hope it’s not taxing the system too much in that regard.
Zoe Rothblatt 04:47
It’s unfortunate to hear this and we’ll keep watching and see where this leads and how we could advocate for children to have better access.
Steven Newmark 04:55
This week, we’re excited to have a special guest here with us, our colleague, Dr. Daniel Hernandez. How are you today, Daniel?
Daniel Hernandez 05:01
I’m fine. Thank you, Steven. And thank you, Zoe, for having me. I’m very excited to be here.
Zoe Rothblatt 05:06
Welcome, Daniel. We’re so excited to have you on The Health Advocates. I’d like to ask you to begin by introducing yourself and what you do here with us.
Daniel Hernandez 05:14
Yeah, my name is Daniel Hernandez. I’m the Director of Medical Affairs and Hispanic Outreach for Global Healthy Living Foundation. We connect patients who are from underserved communities, such as Hispanic community, specifically prefer to speak Spanish with the correct information and resources in order to manage their chronic illness.
Steven Newmark 05:32
Daniel is a great resource for all of us at GHLF. It’s great to have an MD on staff that we can go to with our medical questions. And today, we’re excited to talk with Daniel about vaccines. Can you just give us a basic overview of how vaccines work and provide protection from disease?
Daniel Hernandez 05:50
Sure. Basically, what vaccines are, they’re very simple. They stimulate different branches of your immune system, right? So they stimulate B cells, T cells, antibody levels, to increase and fight the pathogen when you’re exposed to it. That’s all it does. It’s very simple. And that’s been working since the 1700s.
Zoe Rothblatt 06:10
If the vaccines are so simple and work, what role do boosters play? Why do we need those?
Daniel Hernandez 06:15
So those antibody levels that I had just spoken about, they fade away with time. But the B cells, they stay in your body as memory cells. And whenever you’re exposed to that pathogen again, they’re basically like surveillance. So once you’re exposed to that pathogen again, these B cells will recognize the pathogen, and they’re going to start stimulating your immune system. Sometimes it’s recommended to be up to date on these boosters in order to have the strongest immune system possible in order to fight the pathogen. This is especially important when your immune compromised or also, if you’re older than 50 years of age.
Steven Newmark 06:56
Why do vaccines cause side effects?
Daniel Hernandez 06:58
That’s a really good question. In most cases, discomfort from pain or fever is normal. It’s a normal sign that your body is building protection. And it should go away very, very quickly in a few days. If it doesn’t go away in a few days, it’s important to go to the doctor and speak to your doctor about this and just see if it’s an adverse effect. So that’s something that sometimes happens to people, it’s rare. But if it does happen, then your doctor can help you in treating it. And if the side effect is in the rare side of things, then obviously your doctor can help you. But usually, it’s just normal, it’ll go away very quickly.
Zoe Rothblatt 07:35
Well, that’s comforting to hear. We always talk about paying attention to your symptoms and writing them down. So if you know that for a vaccine, it should go away quickly. You could keep jotting down if things are lingering, and then talk to your doctor. Daniel, we’re getting a lot of questions from our community and a big popular one has been, “Should I get the vaccine or a booster if I’ve already had an been sick with COVID?”
Daniel Hernandez 07:59
We’ve been hearing that quite a bit, I know. And the answer is you should get a COVID vaccine even if you have already had COVID. There’s no way to know how long immunity lasts after the infection. And the immune response can vary by a wide variety of things. So it’s the time since the infection, your age, the severity of your illness. And also, as we’ve been hearing all of these strains and variants of the COVID-19 pathogen. So we have to make sure that we’re up to date. And as you both were mentioning that there’s variant specific vaccines that are coming out, we have to make sure that we’re up to date with those as well, in order to protect ourselves in the best way possible.
Steven Newmark 08:42
What is the current state of the COVID vaccine? Does it offer protection? How long is that protection? How safe should we feel?
Daniel Hernandez 08:49
The vaccine will be effective in all of these variants. The level of effectiveness that it will have is still an ongoing research issue. But the bottom line is that it’s very important to get vaccinated because you will build some sort of immunity against the COVID-19 and its variants. So it’s very important to get vaccinated.
Zoe Rothblatt 09:11
We know that it’s kept people out of the hospital, we know that the vaccines have helped protect against severe infection. So while you’re saying that even though we don’t know how much it’ll protect you and you may get sick and feel uncomfortable, we do know that it’s doing its primary purpose of eliminating severe infection for the most part.
Daniel Hernandez 09:30
Absolutely. For the most part, that’s exactly it.
Zoe Rothblatt 09:32
So what are some tips for advocating for yourself when it comes to deciding when you should get the vaccine, where to go, how to talk about it? What is your advice for a patient navigating those conversations?
Daniel Hernandez 09:44
That’s the best advice is speaking to your physician about this. Sometimes it’s difficult to have those conversations especially when the time crunch is so short. A recommendation that we usually tell our patients is call the doctor’s office, leave a voice mail, you’ll get a response back in due time. And express to your physician the issues that you’re having. If it’s the medications that you’re taking, and the hesitancy that you’re having to take the medications plus the vaccine. That’s something very important to speak to your doctor about. Usually, it’s not an issue, the medications that you’re taking and the vaccine, but it’s always very, very important to just double check.
Steven Newmark 10:21
I feel like you’ve given such great advice and thoughts and overviews of the vaccine for our listeners. And we greatly appreciate your time, Dr. Hernandez, and Daniel, my friend. We look forward to your continuing advice. We’d love to have you back on the show one day to check in and see how things are going.
Daniel Hernandez 10:38
Anytime. Thank you so much, Steven.
Zoe Rothblatt 10:39
Thank you, Daniel. It was wonderful to have you on.
Daniel Hernandez 10:42
Thank you so much, Zoe. Have a great, great day.
Zoe Rothblatt 10:45
All right, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 10:49
I found it fascinating the survey that you had mentioned, only 25% of folks who are immunocompromised in our community have taken the fifth shot. And I found it interesting some of the reasons. Number one, not knowing that fifth shot is available and number two, waiting for a vaccine that’s more variant specific. I found that to be just interesting.
Zoe Rothblatt 11:07
And I was reminded by Daniel about the importance of talking to your doctor about your concerns when it comes to the vaccine and your preferences too, and how important that shared decision making is.
Steven Newmark 11:19
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 11:30
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 11:37
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 11:42
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts, and definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. 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.
S4, Ep 6- Patients Spark Action on Methotrexate
The recent abortion ruling by the U.S. Supreme Court created an unintended consequence for patients seeking methotrexate, a drug which prolongs the lifespan of people with rheumatoid arthritis and other inflammatory diseases. In this episode, learn how GHLF is championing the cause and advocating for these patients.
“Imagine what patients are going through…They’re told that they’re no longer able to fill that prescription because of a change in a law,” says Conner Mertens, Patient Advocate and Community Outreach Manager at Global Healthy Living Foundation. “It’s really scary time for some of these patients.”


S4, Ep 6- Patients Spark Action on Methotrexate
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Conner Mertens 00:09
Imagine what patients are going through, they’re gonna go to their pharmacist to fill their prescription they’ve been doing for years now. And they’re told that they’re no longer able to fill that prescription because of a change in a law that they might be able to bear children. It’s really scary time for some of these patients.
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 have Steven Newmark, Director of Policy at the Global Healthy Living Foundation. Today we have a special co-host joining me, Conner Mertens.
Conner Mertens 00:38
So glad to be here, Steven. I’m one of our Patient Advocates and Community Outreach Managers at the Global Healthy Living Foundation.
Steven Newmark 00:44
Zoe’s out helping patients today, but it’s great to have Conner in the co-hosting chair this week.
Conner Mertens 00:48
You know we love helping patients around here, Steven.
Steven Newmark 00:50
Of course. Today we will be discussing the ongoing access issues with methotrexate in the wake of the Supreme Court’s Dobbs versus Jackson decision. And Conner talks extensively to our patients, so he’s the perfect co-host as we continue to explore this issue and try to help patients.
Conner Mertens 01:04
Thanks, Steven. It’s terrible what patients are going through, an unintended consequence of the Dobbs decision. But I’m grateful for the work that we’re doing with GHLF in our community to help bring awareness to this issue as it’s unfolding in real time.
Steven Newmark 01:17
Absolutely. Before we get started, we want to remind everyone that our goal at The Health Advocates is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. We always highlight one of GHLF’s great podcasts, so this week, Conner is here and can tell us about his podcast, Healthcare Matters.
Conner Mertens 01:33
Along with my co-host, Dr. Robert Popovian, we take these complex healthcare policy and economic issues and break them down to something that’s a little easier to understand. Because, you know, Steven, how confusing that can get.
Steven Newmark 01:44
No, that’s true. I’m grateful to both you and Robert, as I need help understanding some of the complexities when it comes to healthcare matters. And we also start out with a listener comment. Are you ready to hear one, Conner?
Conner Mertens 01:54
We always love hearing from the listeners.
Steven Newmark 01:55
Well, this one is from Adrian T. who wrote, “Thank you for covering and raising awareness on the methotrexate access issue.”
Conner Mertens 02:01
We’re always trying to make sure patients are up to date and this is such a topical and timely issue that we’re here to tell you all about it.
Steven Newmark 02:07
Absolutely. And today we’ll talk a lot more about methotrexate. But before turning to that issue, let’s get folks updated on some other important news around the country. A new study came out this week that found that Drug Formularies often have exclusions that could harm your health or cost you more money.
Conner Mertens 02:23
And as you know, formulary is a list of preferred drugs that a health insurance company agrees to cover during their policy.
Steven Newmark 02:30
The researchers, which were led by our colleague and your co-host on Healthcare Matters, Dr. Robert Popovian, found that there were 563 drugs excluded from this particular formulary. Over 40% of the time those exclusions mandate a provider to prescribe a non therapeutic equivalent medicine based on differences in active ingredients or formulation.
Conner Mertens 02:50
And we also saw that a small percentage were complete executions, meaning that there was no recommended alternative on the formulary.
Steven Newmark 02:57
Right. So here’s what you can do. This is an issue that obviously affects patients, and patients unfortunately can’t control Drug Formularies. But what you can do is look around at different health plans to make sure that you choose a health plan that has your preferred doctors and hospitals are in network.
Conner Mertens 03:11
And check the formulary to ensure that any drugs you take for chronic conditions are going to be covered and work with your provider and make sure to check the formulary to ensure any drugs that you take regularly for your chronic conditions are going to be covered.
Steven Newmark 03:25
Before we turn to the methotrexate issue, again, we should give a little update as COVID cases continue to rise. Because the Omicron invades infection based and vaccine based antibodies, then BA.4 and BA.5 variants are taking over as the dominant forms of COVID and driving up positivity rates across the country. But unfortunately, spotty testing and data collection has really hampered the nation’s ability to accurately track the new number of cases.
Conner Mertens 03:49
It’s interesting. I feel like every week I hear another friend that has a text that says they can’t make it to something because they got COVID. And thankfully, they’re staying home and being smart. But all across the country. It’s it sounds like we’re just seeing these these numbers creeping back up and not a lot of mitigation tactics that are being taken.
Steven Newmark 04:07
And we’ll remind our listeners if you’re immunocompromised, or just in the interest of protection, please do wear a high quality mask when you’re indoors. Wear an N95, a KN95, or a KF94 when in public indoor settings and around crowds.
Conner Mertens 04:20
And Steven, I’d like to remind your listeners that they can go to covid.gov and pick up their free tests and they absolutely should. They’re just good to have around.
Steven Newmark 04:28
So let’s get into the methotrexate issue. After the recent Supreme Court decision, GHLF has been hearing from patients around the country that they are now facing additional problems getting their methotrexate treatment because of it’s used in treating ectopic pregnancies.
Conner Mertens 04:41
And let me just say that you and Zoe have been doing a stellar job of making sure that the message is getting out to the community and also the entire country. I have seen you getting your voice out there in LA Times, MSNBC, Time Magazine, ABC News and the BBC. So we’re going international with this issue.
Steven Newmark 04:58
Well, thank you, Conner, but a bigger thanks goes to our patients for sharing their stories. Conner, what are you hearing directly from our patients?
Conner Mertens 05:04
Well, it’s scary. It’s exactly what you described, patients are seeking to fill their prescriptions only to be denied. And these patients have been on these medications, sometimes for years and stable for years. And so it’s really kind of up ending their lives or just causing a lot of severe emotional concern about what could happen.
Steven Newmark 05:21
The time from when you first feel an ailment for a chronic illness to the time it takes to go through, get a diagnosis, and then often the trial and error period when trying out different kinds of medication takes years and for a patient to become stable is really the culmination of a long process. So to take stable patients and to halt their prescriptions for no good reason is just horrific.
Conner Mertens 05:46
Yeah, imagine what patients are going through Steven. They’re gonna go to their pharmacist to fill their prescription, they’ve been doing normally for years now. And they’re told that they’re no longer able to fill that prescription because of a change in the law, that they might be able to bear children. It’s really scary time for some of these patients.
Steven Newmark 06:03
When you say some of these patients, let’s clarify that we are only talking about women of childbearing age. It’s approximately half the population. We’ve also been hearing of a few instances where doctors had to verify clinical criteria and say that this diagnosis code is particular to this and go through a patient’s diagnosis code and patient’s history, which is still bad because it delays patients even for a little bit.
Conner Mertens 06:25
And any delay in care can really affect a patient’s quality of life. Even just a few days of not getting their regularly scheduled medications can can have drastic consequences. And there’s this fear, we’re hearing anecdotally that people are scared because methotrexate is used for abortion. We’re seeing it on social media that women are concerned about losing access to his medication that they’ve been stable on for years, which is ultimately what we’ve been talking about.
Steven Newmark 06:47
We at GHLF sent a letter to Texas Governor Greg Abbott, seeking clarification that the state of Texas explicitly allows for the distribution of FDA approved drugs such as methotrexate to patients with valid prescriptions.
Conner Mertens 06:59
We’re also happy to announce that the Biden administration is taking the best steps that it can to protect access to reproductive health services. Can you tell us a little bit more about that?
Steven Newmark 07:08
Yes, the administration issued a memorandum that states that under federal civil rights law, pregnancy discrimination includes discrimination based on current pregnancy, past pregnancy, potential or intended pregnancy and medical conditions related to pregnancy or childbirth. Further, the Federal Department of Health and Human Services is sending more than 60,000 retail pharmacies a copy of this memorandum this week. Citing provisions in the Affordable Care Act and the Rehabilitation Act of 1973, the memo also states that pharmacies that receive federal funding cannot discriminate based on their views on contraception and abortion in regards to supplying medications such as methotrexate, making determinations regarding sustainability of a prescribed medication for a patient or advising patients even about medications and how to take them.
Conner Mertens 07:53
Thanks, Conner. And thank you to our listeners who always help to keep us informed. Well, Conner, we always end our show by sharing with our audience what we learned today, what did you learn? And as a reminder, medications approved by the US Food and Drug Administration, the FDA, they’ve undergone extensive review and once approved can be prescribed by doctors and used by patients as they’re indicated. So there should be absolutely no reason for any person prescribed methotrexate to be fearful of losing access. It’s a vital medication used by millions of people living with arthritis, psoriasis, and a plethora of other conditions. If you’ve been affected by this methotrexate issue, it’s critical that we hear directly from patients on this. Please email us, you can email me directly. That’s [email protected] And we’ll make sure that you get a megaphone to tell your story. I learned that despite everyone kind of saying we’re out of this pandemic, we’re certainly not out of this pandemic. We still gotta be taking those mitigating steps and looking out for one another.
Steven Newmark 08:50
And I learned just in talking to you, it was great to distill a complex issue, this complex science policy issue, that was fun to do. So thank you for that. Well, we hope that you’ve learned something too. We’d love to hear from you about your advocacy stories or what’s going on in your world. Send your emails to [email protected] Or better yet, include a short video or audio clip.
Conner Mertens 09:13
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 09:19
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Conner Mertens 09:24
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. It was great to be part of the show, Steven. Thanks for having me. You and Zoe are invited on to Healthcare Matters whenever you want. If you liked this episode, give us a rating and write a review on Apple Podcasts. And don’t forget to hit that subscribe button, it’ll help people like you find us. I’m Conner Mertens
Steven Newmark 09:44
Steven Newmark, we’ll see you next time.
Narrator 09:49
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 5-Methotrexate: Confusion and Controversy
If you’re immunocompromised, you’re tired of having to fight for basic health care. But after the U.S. Supreme Court issued Dobbs vs. Jackson which overturned Roe vs. Wade, access to the drug methotrexate, which prolongs the lifespan of people with rheumatoid arthritis, is being denied in some states due to its connection to abortion.
“There’s so much confusion and overwhelm with managing such a dynamic fluctuating condition like inflammatory arthritis, that when you finally find through trial and error, a medication regimen that works for you, it’s like striking gold,” says Cheryl Crow, founder of Arthritis Life. “So, to know that suddenly that’s going to be taken away from you, it’s really scary to a lot of patients.”


S4, Ep 5-Methotrexate: Confusion and Controversy
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Cheryl Crow 00:08
There’s so much confusion and overwhelm with managing such a dynamic fluctuating condition like inflammatory arthritis, that when you finally find through trial and error, a medication regimen that works for you, it’s like striking gold. So to know that suddenly that’s going to be taken away from you, it’s really scary to a lot of patients.
Steven Newmark 00:30
Welcome to The Health Advocates, a podcast that breaks down on 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 00:40
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:45
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. You have so many to choose from.
Zoe Rothblatt 00:58
We sure do. And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Thriving While Aching, one of our newest podcasts that inspires and teaches you how to live a fuller life while safely managing your pain.
Steven Newmark 01:14
Yes, I’ve taken a listen. It’s a great podcast hosted by Dr. Laurie Ferguson. It really helps, as we like to say, live your best life.
Zoe Rothblatt 01:21
Thriving while you’re aching, like the name says. All right, let’s start with the listener comment as we always do. Ready, Steven?
Steven Newmark 01:28
I am ready.
Zoe Rothblatt 01:29
This one is from Taylor D who wrote, “Thank you for keeping me informed on the latest issues for those with chronic illness.”
Steven Newmark 01:35
Thank you, Taylor for the comment. Much appreciated.
Zoe Rothblatt 01:39
All right, let’s jump into our news. I saw that many Washington counties are starting to wear masks again, after they’ve been rated as a high community level by the CDC.
Steven Newmark 01:49
In Washington State, the CDC has shown that 15 counties have high levels of COVID-19. And as such, they’re asking folks to mask up again.
Zoe Rothblatt 01:57
And as a reminder, high means that you’ve had 200 or more new COVID cases per 100,000 people in the last seven days or more than 20 new COVID hospital admissions per 100,000 in a seven day period. So given that they’re asking to mask up.
Steven Newmark 02:15
I think we’re starting to feel another wave or a wavelette, mini wave, the BA.4, BA.5 wave.
Zoe Rothblatt 02:21
And the CDC has a really good tracker on their website. So if you’re wondering, it’s pretty simple to look it up. And just for our community’s immunocompromised, of course mask indoors, you should take extra precautions like distancing, avoiding crowding areas.
Steven Newmark 02:36
Absolutely. So what else is happening in the news?
Zoe Rothblatt 02:38
Well, I saw that Aetna, the health insurance company, dropped prior authorization for most cataract surgeries.
Steven Newmark 02:45
Great.
Zoe Rothblatt 02:45
So this means that patients won’t need a pre-approval.
Steven Newmark 02:49
And this covers all patients except those enrolled in Medicare Advantage in Florida and Georgia.
Zoe Rothblatt 02:54
This was a big win because there was pushback, I think about a year ago, Aetna announced that there would be this prior authorization. And what they’ve said is that the indications for cataract surgery are well established. That’s what the doctors were arguing. And the benefits are so clear, so this extra step is a really big imposition. It’s good to see that now they’re walking that back and people have more access. And Steven, we hear all the time from our patients about delays with prior authorization. We know how annoying that is.
Steven Newmark 03:22
Yeah, well, I have big news. This is big to me. Here in New York City, officials are working to increase the number of public restrooms. Very happy for me.
Zoe Rothblatt 03:32
Oh, my goodness, this is so exciting. You can’t be a New Yorker and not have a story about desperately trying to find a bathroom. It feels like there’s none, especially as an IBD patient. It really feels like there’s none.
Steven Newmark 03:44
Totally. I’ve definitely done my fair share of walking into restaurants. “Yeah, I’m just waiting for my friends. While I wait, I’m just gonna run to the restroom.”
Zoe Rothblatt 03:52
I know and you want to have easy access. You don’t want to have to come up with a cover story like that. So this is great news.
Steven Newmark 03:58
New York, by the way, ranks 93rd in the United States in its ratio public restrooms to people with just 16 public restrooms for 100,000 inhabitants.
Zoe Rothblatt 04:07
Wow.
Steven Newmark 04:07
So there’s legislation in the New York City Council that would require the New York City Department of Transportation and the City Department of Parks and Recreation to submit a joint report to the Mayor and the City Council Speaker that identifies at least one location in every one of New York City’s zip codes, there’s 214 zip codes in the city, that would be suitable to install a public restroom.
Zoe Rothblatt 04:28
That’s awesome.
Steven Newmark 04:29
This is a big win for our IBD community who often has an urgent need for restroom access. So this is great.
Zoe Rothblatt 04:34
Especially with COVID.
Steven Newmark 04:36
Right!
Zoe Rothblatt 04:37
I know it’s harder to get into a restroom. Whether it’s part of a private facility or a public facility. There’s more restrictions and for an IBD patient or digestive disease patient who has an urgent need to go to the bathroom and often can’t wait, you don’t really have time to explain, “Listen, I have IBD, I really gotta go,” because you really have to go so to increase the number of public restrooms really does make a difference in quality of life. And our last big piece of news, we touched on it in our last episode is the issue of methotrexate access. Steven and I had an interview with Cheryl Crow, who’s an occupational therapist, rheumatoid arthritis patient. And we talked a lot about this issue and I’m excited for you to listen.
Steven Newmark 05:19
Yeah, I’m excited too. Here at GHLF we’ve been working a lot on this issue the last few days. It’s unfortunate in the wake of the Supreme Court decision that overturned Roe vs. Wade, in multiple states where abortion is now illegal there have been access issues to methotrexate.
Zoe Rothblatt 05:36
Methotrexate is a drug that’s commonly used in our community to treat autoimmune arthritis. And it also has this secondary use at higher doses to be used for an abortion for an ectopic pregnancy. And in some states that have stricter abortion laws, it’s now being restricted as an abortion inducing medication. And pharmacists are nervous because the law states that it’s a felony if you’re dispensing this medication for an abortion. Of course, our community is using it for a completely different purpose. But we’ve been hearing that as a result of laws that are coming out that people are having to extra validate their prescriptions or getting denied. And there’s a lot of fear in our community. So we just want to sit down with Cheryl who’s been a large voice in advocating on social media and hear what she’s thinking about this issue and how she’s advocating. This week on The Health Advocates, we have a special guest here with us, Cheryl Crow, who is an occupational therapist, rheumatoid arthritis patient and founder of Arthritis Life. Hi, Cheryl, how are you today?
Cheryl Crow 06:36
Hi, I’m great. Thanks so much for having me.
Zoe Rothblatt 06:39
Of course, do you want to kick it off by telling us a little bit about Arthritis Life and what you do?
Cheryl Crow 06:44
Yeah, yeah. So I personally have had rheumatoid arthritis for 19 years now. And after becoming an occupational therapist, I noticed so many patients with inflammatory forms of arthritis like rheumatoid, they really needed help with daily living tasks. And if I could summarize occupational therapy, because a lot of people don’t know what we do, it would be that we are life skills specialists. So every little barrier or annoyance in your life, from opening jars to difficulty navigating the healthcare system, we are really experts in those life skills. And so I started Arthritis Life to fill a gap I saw in patient education and support. I thought that people needed more rigorous, in depth access to support groups and education. So I’ve put together some of my own courses and online support groups. And it’s been a wonderful experience. Plus, I also do a lot of, I guess you call it outreach, on social media through sharing my personal and professional life hacks for arthritis.
Zoe Rothblatt 07:41
We’re so appreciative of what you do. Just something funny to point out that you mentioned about the jar, I remember you are the one who showed me about the electronic jar opener and it is life changing. So do not dismiss these small tricks. They really help.
Cheryl Crow 07:55
Everything’s interrelated. And I sometimes joke that my unofficial tagline for Arthritis Life is “Come for the life hacks stay for the emotional support.” Because really, at the end of the day, that is actually what I’m really the most passionate about is helping people with coping skills to cope with all the uncertainties and ups and downs of chronic illness. And something as simple as having difficulty opening a jar or zipping up your jeans, it does profoundly affect your emotional life too. Especially as a young person with chronic illness, you don’t want to feel like you can’t do basic daily living tasks. So yeah, I’m a big proponent of small gains add up over time
Zoe Rothblatt 08:33
100%. I love tuning into your tips. But you know, you brought up something about emotional support. We’re here today to sort of talk about this huge emotional issue going on. Patients around the country here in the US are having trouble either accessing their methotrexate or fearing that they’re going to lose access to their methotrexate. I’m wondering if you could kick us off with a recap of what’s happening.
Cheryl Crow 08:57
Yeah, like with everything else in autoimmune disease, everything becomes complicated really quickly. Methotrexate has been the gold standard starting treatment for rheumatoid arthritis for many, many decades, and it’s very cheap and effective. So it was really surprising to a lot of people that suddenly it was being denied because in rheumatoid arthritis, we’re used to medications being denied that are the expensive specialty tier medications like the biologics. So the reason is because methotrexate is not only used for lupus and rheumatoid arthritis and similar conditions, it’s also used at higher doses to end a ectopic pregnancy. And so when the Supreme Court overturned Roe versus Wade, certain states, not the majority, but certain states like Texas have written into their laws, specifically calling out methotrexate as something that is not okay to be prescribed anymore. This is not legal advice. And the legal part is very overwhelming and confusing, but basically, the result is that there has been a lot of confusion on the part of doctors and particularly pharmacists on whether they are still allowed to prescribe this in cases that don’t have anything to do with reproductive health like the case of rheumatoid arthritis.
Zoe Rothblatt 10:14
It’s so terrible that this is happening. And because methotrexate is restricted as an abortion inducing drug, what does that mean for patients in our community who take it for completely different uses? And I think we’re hearing a lot of noise on social media, the chronic illness community is loud and advocating, as usual, I wanted to ask, what is the sense that you’re hearing about patients on social media and their access issues?
Cheryl Crow 10:40
I think it’s really example of insult to injury because we have to look at the context of this happening. It’s not just one lone instance of a medication being denied. For many people, this is like the third major barrier they’ve had for getting their medication. The first one might be they were denied a biologic because of their insurance wanting them to fail a cheaper medicine first, ironically, which is using methotrexate. And then secondly, they might have been denied Plaquenil during the pandemic earlier, because of that being used for COVID. And then now this is the third thing. And I think that there’s so much confusion and overwhelm with managing such a dynamic fluctuating condition like inflammatory arthritis, that when you finally find through trial and error, a medication regimen that works for you, it’s like striking gold, right? And it can take a long time. And it can take a lot of pain to get to that point where you’re like, “Okay, finally, I found the combination that’s working for me.” So to know that suddenly that’s going to be taken away from you is it’s really scary to a lot of patients. I could group two different groups, there’s the newly diagnosed patients, and then there’s the established patients. The newly diagnosed is hard because many of them are initially scared to start any medication period, because it’s a new thing for them, right? And they’re scared of side effects. You go from scared of taking methotrexate to, “Wait a minute but I want the option of taking it, if my doctor says I need it, I want to take it.” So it’s very overwhelming. And I think the third or fourth blow would also be that a lot of patients are autoimmune patients. Right now we know that we’re immunosuppressed, the degree to which we are immunosuppressed is still kind of confusing to many of us. I am an optimist by nature, I think this issue is going to be resolved in the majority of cases. And right now, in the majority of states, there isn’t an issue getting the methotrexate, but we’re tired of having to fight for the basic standard of care we deserve to get.
Zoe Rothblatt 12:34
It isn’t fair. And it’s also not fair because these are not based on medical decisions. You and your doctor know your personal history, your medical history, your lifestyle, and you’ve chosen to use all that to make an informed medical choice with your doctor. And then this outside thing is stepping in and saying, “Well, for no medical reason, we’re going to take you off your medication and now your stable health is put at risk,” which is just so unfair.
Cheryl Crow 12:57
It is. This medication, methotrexate alone, is associated with an increase in lifespan. So this is not just a quality of life issue. This is literally a life prolonging medication. And there was an article even back in 2002, Choi et al, “Methotrexate and mortality in patients with rheumatoid arthritis,” that clarified there is typically a 10 year reduction in lifespan for rheumatoid arthritis. That’s huge. Instead of living to 75, I’m gonna live to 65.
Zoe Rothblatt 13:24
And with a better quality of life, because these medications are reducing your symptoms and pain and reducing the joint damage and you’re able to live so much better with modern medicine.
Cheryl Crow 13:36
Exactly, like quality of life is extremely important. But also I think if you’re talking about this, as this is a life issue for many people, my life matters, too. Right? And methotrexate not only prolongs the lifespan of people with rheumatoid arthritis, it also augments the effectiveness of a biologic. So like I’ve always been on methotrexate plus a biologic because I have a history of making antibodies to the biologic. So it’s just really an essential part of treatment for rheumatoid arthritis. You know, I saw an article from 2019 from the Annals of Internal Medicine by Jeff Sparks, said that 50% of patients do well on methotrexate, monotherapy or methotrexate alone. That’s a huge amount of patients and to deny them this based on it’s not a medical decision. It’s really scary. I’ve seen people on social media who have been successfully treated with methotrexate now their doctors and pharmacists are refusing to give it to them and it feels unethical.
Zoe Rothblatt 14:33
I agree. It really does feel unethical and like you said, a patient goes through so much to find the right treatment and to be faced with another barrier is so challenging to say the least. So one thing we’ve been hearing a lot on social media is that a number of patients have had to go through I guess like an extra verification process to get their methotrexate. So it wasn’t completely denied but the pharmacists and doctors offices are being extra careful and you have to submit more clinical criteria to say this is the diagnosis code, my patient is in fact, on this medication. I’m wondering what advice do you have for patients that are in that situation where they need to communicate with their doctor? What are some of your best tips for opening that line of communication advocating to get your medication?
Cheryl Crow 15:18
I think communicating as early as possible is really important. So if you are worried that this might affect you, contact them now. It doesn’t have to be direct communication to your rheumatologist, it could also be to the rheumatology nurse or anyone else on their staff. You know, this is a lifelong condition. So in general, it’s really in your best interest to develop a good relationship with all of the people, the front desk, the rheumatology nurse. Also keep an eye out on the advocacy organizations and what statements they’re putting out like the American College of Rheumatology. They’re gathering stories currently from patients and providers. They’re trying to figure out where is the issue coming up. I know for some patients, it’s been the doctor who is fine with prescribing it, but when they go to the pharmacy, the pharmacist says no. For other patients, it’s actually at the level of the doctor. Like there was a woman on Twitter in Tennessee that said that their facility said, “We have been instructed to discontinue methotrexate in female patients of childbearing age.”
Zoe Rothblatt 16:15
Wow, that’s just such a powerful statement. There’s no reason just because of who you are, you’re being denied this medication.
Cheryl Crow 16:24
Exactly. And I know that there are some lawyers that are looking into this as a potential lawsuit for gender discrimination. I have been hearing from patients who have received their methotrexate. Some of them are like, “Well, I’m 74. So I got it. But I don’t know whether that’s because of my age,” or there was one patient in Houston, which is where, you know, Texas is where a lot of the denials are happening. But she said that her pharmacy, they saw this coming and they just had to document that she was on birth control. But again, not I should even say just how many people don’t want to take birth control and maybe it messes with their hormones. Unfortunately, I heard another case where a pediatric rheumatologist where their pharmacy told an eight year old patient that she had to take a pregnancy test before they would give her methotrexate.
Zoe Rothblatt 17:05
Wow. If you take injectable methotrexate, you take it once a week. And usually typically a supply is given for a month. So you can only imagine every single month you have to go through this and you’ll reprove your disability again, reprove that you’re taking whatever steps they’re deciding you have to take in order to get your medication. It’s exhausting. You know, something we always say is having chronic illness as a full time job. this like adding another internship to that job. It’s too much, you know.
Cheryl Crow 17:32
On top of what patients already are having to do to get there other medications, the biologics. I mean, we’ve been advocating for years to get step therapy and fail first practices to be decreased. It’s tiring, and most people don’t have the emotional and just logistical time and the medical expertise to understand even how to advocate and how to get started. So that’s why organizations like Global Healthy Living Foundation, you know, and other disease specific nonprofits can be a really great lifeline right now. So keeping an eye out also for like the disease specific nonprofits that are putting out statements and putting out resources is going to be really helpful as well.
Zoe Rothblatt 18:11
On that note, my last question for you, Cheryl, is why is it important to share your stories? You’ve been so active on social media trying to reshare other people’s stories and giving your own perspective. Talk to us about what that does in this scenario.
Cheryl Crow 18:25
It’s important to share stories because humans are storytellers. And so I think of it from multiple angles. I think it’s personally from my personality, it’s very cathartic to share my story. I know not everyone is like that. Some people are more shy or introverted. It’s stressful for them to share their stories. So I want to acknowledge that not everyone enjoys sharing, as much as I do, you know, Show and Tell was my favorite subject in school. So I’m like, I’ll share anything. For me, it brings purpose to my life, to share my story and to amplify other people’s stories. It’s also important for health care providers to hear the direct patient stories. And for patients to hear the direct provider stories, it’s important for us to all hear each other’s stories to understand each other better, because it’s interesting being both like a licensed health provider and I’m an occupational therapist, I’m not a doctor provider, but and a patient. I do see sometimes that there’s a little bit of a don’t shoot the messenger thing that happens sometimes, like there’s many times that the doctors or health providers would love to give you like the best care possible and they literally just can’t for reasons out of their control. So if we share our stories, we can understand each other better. And also problem solve. In this case, everyone sharing their stories really helped the larger organizations figure out what was going on. Where’s this happening? You know, is it Tennessee? Is it Texas? Is it Michigan? Why was somebody in Pennsylvania all of a sudden denied? You know, there’s, the more stories we have, the more information we can gather, I guess. For sure, just piecing together and then you know being able to say now that we have this information, we can educate and advocate so that people in those scenarios know what to do. And the people who aren’t in those scenarios can prepare and be equipped to deal with them if it comes up. Cheryl, thank you so much for joining us today. We appreciate your insights on this issue. And of course, we hope everyone gets access to their medication, but if not, we know we’re fighting together. Thank you so much. And thank you for what you’re doing to track this issue. I’ve been directing people your way to share their stories. So thank you.
Zoe Rothblatt 20:30
All right, Steven, that brings us to the close of our show. What did you learn about today?
Steven Newmark 20:35
Well, it was great listening to your interview with Cheryl. I really learned firsthand what patients are dealing with when we talk about the methotrexate issue. To hear Cheryl’s story and all that she’s doing to help advocate on behalf of herself and other patients is really inspiring.
Zoe Rothblatt 20:49
And I learned that we have a big win for IBD patients and hopefully more public restrooms in New York City.
Steven Newmark 20:56
We hope that you learned something too. We’d love to hear from you about what you’re up to these days. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 21:07
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 21:14
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 21:20
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 like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 21:36
I’m Steven Newmark. We’ll see you next time.
Narrator 21:41
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 4- Advocating for BIPOC and LGBTQIA+ Health Care
Diseases don’t discriminate; anyone can get one or suffer from a chronic illness. But they do disproportionately affect BIPOC and LGBTQIA+ communities. In this episode, Sarah Shaw, BIPOC Outreach Manager at Global Healthy Living Foundation, describes what it’s like being a Queer, Black woman living with chronic migraine, endometriosis, and anxiety and how health care providers must improve interaction with these communities.
“Maybe if there have been more representation showing that Queer people get migraine. Black, Indigenous, and People of Color get migraine. Men, Women, Trans, and Non-Binary folks get migraine. If that representation had been there, maybe they would have jumped to a migraine conclusion diagnosis first, instead of what I was pushed on, which was, ‘Oh, it’s just anxiety or stress,’ when I was seeking answers,” says Sarah.


S4, Ep 4- Advocating for BIPOC and LGBTQIA+ Health Care
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Sarah Shaw 00:08
Maybe if there have been more representation showing that queer people get migraine. Black, Indigenous, and People of Color get migraine. Men, women, trans, and non binary folks get migraine. If that representation had been there, maybe they would have jumped to a migraine conclusion diagnosis first instead of what I was pushed on, which was, “Oh, it’s just anxiety or stress,” when I was seeking answers.
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 00:40
And I’m Zoe Rothblatt, Associate Director of Community Outreach at GHLF.
Steven Newmark 00:45
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:58
Yes, we sure do. And as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to our newest podcast which just launched called Thriving While Aching. It’s a series hosted by Laurie Ferguson, who’s a clinical psychologist and certified health coach, and it showcases the stories of older adults doing what they love while living in pain.
Steven Newmark 01:20
I can’t wait to take a listen.
Zoe Rothblatt 01:22
Yeah, Steven, you’re gonna love it. Okay, well let’s start with listener comment as we always do. Are you ready?
Steven Newmark 01:27
I am ready.
Zoe Rothblatt 01:29
This one came from Meghan P. who wrote, “Insightful and easy to listen to.”
Steven Newmark 01:34
Insightful we go for that. Easy listening, like elevator music.
Zoe Rothblatt 01:42
Facts. Okay, let’s jump into our news update. The first thing I wanted to talk about was the fifth shot for immunocompromised. Have you seen this?
Steven Newmark 01:52
Yeah. Cinco.
Zoe Rothblatt 01:53
Yes. So the CDC notes that people ages 12 and older who are moderately or severely immunocompromised should receive a total of five doses of an mRNA vaccine to stay up to date. So those five include the three primary series and two boosters.
Steven Newmark 02:08
So the general population, remember, is only recommended to have one booster at this time, although the two booster regimen can be given to those over age 50.
Zoe Rothblatt 02:16
For those of our listeners who got the one dose Johnson and Johnson and are wondering what this means for them, the CDC says that you should get a second dose of either mRNA vaccine and then two mRNA boosters for a total of four doses.
Steven Newmark 02:30
This one felt like the CDC did this somewhat quietly. I didn’t see a big announcement. I don’t know. Did you?
Zoe Rothblatt 02:36
No, and I’m glad you said that because it did feel quiet. And you know, I heard somebody in our community mention it and I looked it up and there was all this guidance on the website. And I was wondering why we didn’t get this big announcement and why there was no news coverage of it, or not big enough news coverage.
Steven Newmark 02:53
Strange. Well, we at GHLF will work hard to dig deep on the CDC’s websites and always find whatever information is out there.
Zoe Rothblatt 03:00
And I guess one big question is, will I keep needing boosters? I don’t know. Do you have thoughts on the answer to this? It seems like a lot to keep getting shots.
Steven Newmark 03:10
Yeah. For now we’re at the stage where if you’re immunocompromised, it’s two boosters. If you’re not, it’s one booster. But that may change when there’s an updated vaccine that is more durable or when a different type of technology exists for folks who are immunocompromised. Well, there was big health news. And then it does relate to immunocompromised, the Supreme Court overturned Roe versus Wade.
News Reporter 03:30
There is no longer a federal constitutional right to an abortion. Even though America was braced for the decision, it was nonetheless momentous.
Steven Newmark 03:40
Which means that it’s up to each state to determine individual laws when it comes to abortion.
Zoe Rothblatt 03:44
Thinking about this in terms of our community who live with chronic illness, I would say that the first thing to point out here is just talk to your doctor about your medications. There are certain medications used for inflammatory diseases that have a product label warning not to use them when planning to become pregnant or when you’re pregnant or breastfeeding. So I would say now more than ever, it’s really important to have those family planning conversations with your doctor just understanding the risks of certain medications.
Steven Newmark 04:12
We’re already hearing about an access issue in certain states that had what are called trigger laws that outlawed abortion in those states. The moment the Supreme Court made such a ruling, we’re starting to hear that particular medications that are used for treatments of inflammatory conditions, as well as treatments for abortion, are being withheld for autoimmune patients.
Zoe Rothblatt 04:33
An example of this is in Texas there’s a law, SB 4, that restricts the distribution of medication that can be used for abortions. So two medications that we know our community uses have been added to this category of abortion inducing drug in Texas law. So even if people in our community are using it to treat their chronic illness, since it also has this other use it’s approved for, it’s causing fear amongst pharmacists, people are gonna start being extra cautious. We’ve seen people tweeting out that they’re already getting denied and their prescriptions are being called into question. So it’s just really shocking to see the impact it’s having on our health already.
Steven Newmark 05:11
Absolutely. I’d say the big takeaway for anyone who is on methotrexate or any of these other similar therapeutics, and you live in one of these states that have outlawed abortion already to understand the new landscape, and it may be more difficult to obtain your prescription. It may take more time. Pharmacists and doctors are proceeding with more caution.
Zoe Rothblatt 05:32
You know, of course, we’ll keep an eye out as advocates on different policies that come up and ways we can advocate and raise our voice. Because, you know, of course, we believe everyone should have access to their medication that treats their condition at the right time, and you shouldn’t be delayed. And you shouldn’t have to go through this. And it’s really unfair, and just know that we’re doing our best here to try and help you.
Steven Newmark 05:53
Absolutely. This week, we have a special guest here with us, Sarah Shaw, who is part of our advocacy team here at GHLF. She’s our BIPOC Outreach Manager. Hi, Sarah. How are you today?
Sarah Shaw 06:03
Hey, hey, thanks, Steven and Zoe for having me back on the show. I’m really glad to be back here.
Zoe Rothblatt 06:08
Welcome, Sarah. Last time you came on The Health Advocates, we talked about your advocacy experience with Headache on the Hill. Today we’ll continue that discussion as it’s Migraine and Headache Awareness Month. And it’s also Pride Month. We wanted to have you on just to talk about why awareness and advocacy is so important and how different parts of your identity play into your chronic illness and treatment journey. What do these awareness months mean to you?
Sarah Shaw 06:32
It’s really cool that Pride Month, Migraine and Headache Awareness Month, and Juneteenth all fall in the same month. There is this meme going around, about when you’re Black and have migraine during Pride Month that you get elevated during this month. And I just think that it’s a great way to not only celebrate who you are, but also bring awareness to identities, to chronic diseases that are so important, not only that are huge part of my identity as a queer Black woman living with migraine, but to a lot of other people that might not be aware of it. It’s a way to build community, to make people feel less alone. It’s also time to celebrate who you are, and bring up serious issues facing our communities at the same time. You can help educate others inside and outside of the communities about what’s going on and why it’s so important to support us. And it’s also a chance for our allies to help out and support us as well. So I think all around there’s a lot of communicating and a lot of awareness going on this month and a lot of love to share.
Steven Newmark 07:27
How does your identity play into dealing with a chronic illness? And vice versa, how does having a chronic illness play into your identity as to who you are?
Sarah Shaw 07:36
Being a queer Black woman living with chronic migraine, endometriosis, and anxiety, it is a part of me and it’s inevitably going to come up when I go to the doctor’s office. Especially when I see a new doctor, whether that be if my insurance changes, or I need to find a new doctor if I have a new condition. Or if when a doctor that I’ve been seeing for a while leaves and what not a lot of people realize is that when that happens, you often have to come out every time you have a change in your doctor’s office. In the very beginning, it was very awkward to come out. And sometimes people are not as accepting in doctor’s offices, or they’re very confused, or they’ll use the wrong language. And for me, I’m a cisgendered, queer Black woman so I present as female, then my pronouns never get misused, but for our trans and non binary folks, that does end up happening to them. And I want to make sure that they are in a safe and accepting physician’s office and we want to make sure that people feel as safe as they can when they are at the doctor. So I think I can’t really have one without the other anymore. Migraine is part of me, my queer identity is a part of me and they interchange.
Zoe Rothblatt 08:43
I love what you said about feeling safe at the doctor’s office, you’re already so vulnerable when you feel sick, when you’re seeking a diagnosis and to have an extra layer of feeling uncomfortable on top of that is really challenging. And you mentioned some doctors using the wrong language. I’m wondering if you could share with us, what’s some positive language that has made you feel more comfortable in the doctor’s office?
Sarah Shaw 09:05
When I would go to my gynecologist office, they would often use the term woman and for me that was correct. But people with uteruses, like gender inclusive language like that. On the forms, sometimes it’ll say just female and male, no other option or are you single, married or other and it would be nice to have more inclusive language because sometimes people in our community, they might have multiple partners. And I think just making those changes, making sure that pronouns are used and just not assuming and making sure that dead names aren’t used when at the doctor’s office. This, again, does not apply to me. But it does apply to a lot of people within the LGBTQIA+ community to make sure that you’re being as affirming and inclusive. That your practice is as inclusive as it can be. And you’re always learning, you’re gonna make mistakes, but checking in and tapping into the community, we’re always willing to talk and help and I think that that’s just such a great way to make your space just better for patients all around. What do you think are some of the unique challenges that LGBT folks face when accessing migraine treatment and care? I think access to health care and treatment is still such a huge issue for folks in the LGBTQIA+ community. A lot of us don’t have access to insurance or are disabled or on Medicaid. And we need to make sure that they still have access to the same amazing doctors that people with commercial insurance have and treatments. And oftentimes, that is not the case. And people end up having to forego seeing a doctor, forgo getting treatment. And also, they have similar issues to insurance barriers. And sometimes we don’t have the time or energy or money to fight these cases. I have a lot of privilege as a cisgender queer woman, but I’m always fighting to make sure for a more inclusive workplace. And unfortunately, there is still homophobia that exists in the healthcare system, we just have to do better to ensure that we’re making sure every patient is getting the type of equitable care that they deserve.
Zoe Rothblatt 10:55
And I think it’s so important to listen to stories like yours and perspectives like yours, because you’re in the community talking to people and you’re hearing those stories about what people are encountering when they go in the doctor’s offices. And we really need to do a better job at calling that out. And like you’re saying, you can really change a simple piece of paper, you can alter a form and that can make a huge difference in someone’s day and life. So I just appreciate so much that you’re giving tangible examples of ways that we can fix things in our system.
Sarah Shaw 11:24
Yeah, if we all work together, I know that we can really make change.
Zoe Rothblatt 11:29
I want to talk about Talking Head Pain, another GHLF podcast, which you’ve been featured on. You shared about experience of navigating migraine care as a person in various marginalized communities. And I’d like to play a clip of you in an episode of Talking Head Pain where you shared your experiences of navigating migraine care as a person in various marginalized communities.
Sarah Shaw 11:49
“You hear the word migraine thrown around a lot. It’s sometimes very stigmatized. And when it’s portrayed, it’s all middle aged white women. But I didn’t recognize this was something that Black people could get. Because I had never seen, until much recently, Black people portrayed in migraine commercials, even for prescription medication in social media, in doctors offices.”
Zoe Rothblatt 12:16
Sarah, what are some of these stigmas that you’re talking about that migraine patients face? And how did that play into your journey?
Sarah Shaw 12:23
For me as a queer Black woman just starting out on my migraine journey when I didn’t know what I was experiencing was a migraine attack, what you see when you think of a migraine, it’s shown as a cisgendered, straight, white, middle aged woman. When that is all that surrounds you, you start to think that that’s not something that can affect you. I feel like my migraine diagnosis was really delayed due to the fact that not only myself but my doctors also didn’t think that migraine was something that was affecting me. Maybe if there had been more representation showing that queer people get migraine. Black, Indigenous, and People of Color get migraine. Men, women, trans and non binary folks get migraine. I feel like if that representation had been there and had been in the forefront, then maybe they would have jumped to a migraine conclusion diagnosis first, instead of what I was pushed on, which was, “Oh, it’s just anxiety or stress,” when I was seeking answers. And I think that that’s something that affects a lot of people within both of the communities that I’m a part of; BIPOC and the queer community.
Zoe Rothblatt 13:23
That brings us back to what we’re talking about in the beginning, how important these awareness months are, because it really does give a big name and a big face just to showcase that more than one type of person gets these diseases. Diseases don’t discriminate.
Sarah Shaw 13:36
They definitely don’t. But they do disproportionately affect BIPOC communities and LGBTQIA+ communities.
Steven Newmark 13:42
Sarah, what advice do you have for others on speaking up and advocating as you have?
Sarah Shaw 13:47
I think the first thing is self care is so important. And you have to remember it’s a marathon, not a sprint with advocating. Make sure that you take breaks, to take care of yourself. I know that I’ve been taking more part in our Wellness, Evolution podcast “Breathing Breaks.” Those have been so helpful for me throughout the day, because sometimes you just need to breathe. And remember that when you first start out, or even if you’ve been doing this for one year, three months or five years, remember that your story does matter. And it may not seem at the moment that like people are listening to you. But I guarantee you, if you yell hard enough into the void like I did, like I started out my advocacy just yelling out into the void on Twitter about what was going on with me, how I was feeling and the void, I think this joke, the void shouted back. They found me, they yell back at me in a good way. And they supported me. The community is there and sometimes when the community is really magical and they’ve got your back and you can really look to them to be mentors and also help pave your own way in advocacy as well and lead you hopefully to the Global Health Living Foundation.
Zoe Rothblatt 14:46
I love that, “The void shouted back.” That’s such a good quote. And I’m so glad they shouted back and brought you here on with us and we’ll keep shouting with you. Well Sarah, thank you so much for joining us today. We appreciate your candidness and just sharing your story with us and our listeners. Thank you.
Sarah Shaw 15:03
Thank you both.
Steven Newmark 15:04
Yes, absolutely.
Zoe Rothblatt 15:05
Okay, Steven, that brings us to the close of our show. What did you learn about today?
Steven Newmark 15:09
I learned what folks like Sarah in the LGBTQ community face when accessing treatment and care and the unique barriers and difficulties they go through.
Zoe Rothblatt 15:18
And I learned from Sarah about ways that we can help be more inclusive, like updating the forms at doctor’s offices to just take into account all identities.
Steven Newmark 15:29
Well, we hope that you learned something too. We’d love to hear from you about your stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 15:39
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 15:45
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 15:50
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 16:08
I’m Steven Newmark. We’ll see you next time.
Narrator 16:13
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 3- When Is A Cold, Just A Cold?
Have you noticed your symptoms for a common cold during COVID are worse than normal? You’re not alone. Researchers believe our acquired immunity is lower, which can be particularly nerve wracking for those in the immunocompromised community.
“The weird thing about the pandemic during the lockdown phase is I didn’t get sick,” says Steven Newmark, Director of Policy at Global Healthy Living Foundation. “And I was so used to, my whole life, going through a winter and always having a tickle in my throat or sneezing or what have you. And to have zero illness was just a very strange experience.”


S4, Ep 3- When Is A Cold, Just A Cold?
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:06
The weird thing about the pandemic during the lockdown phase is I didn’t get sick. And I was so used to, my whole life, going through a winter and always having a tickle in my throat or sneezing or what have you. And to have zero illness was just a very strange experience. 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 00:34
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager 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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:53
Yes, and as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Wellness Evolution. That’s a podcast that brings together diverse communities to discuss topics like mindfulness, chronic illness, and mental health along with some breathing exercises. So let’s start as we always do with a listener comment. Are you ready, Steven?
Steven Newmark 01:16
I am ready.
Zoe Rothblatt 01:17
This one came from EGA95, who wrote, “I just listened to the conference episode and really appreciate the host sharing their highlights in an easy to understand format.”
Steven Newmark 01:27
Thank you, EGA95. That means a lot. Especially going to conferences, it’s not so easy to travel in this day and age with everything going on. So it’s nice to be able to report back and hear that folks like listening to it.
Zoe Rothblatt 01:38
Alright, shall we hop into our news updates?
Steven Newmark 01:40
Absolutely.
Zoe Rothblatt 01:42
The first one is that the US Centers for Disease Control and Prevention, the CDC, endorses Pfizer and Moderna vaccines for children.
Steven Newmark 01:51
That was me clapping.
Zoe Rothblatt 01:52
Big round of applause.
Steven Newmark 01:54
So now children as young as six months are eligible to get a COVID vaccine.
Zoe Rothblatt 01:58
This is good timing. It’s the start of busy summer, a lot of people are going on vacation and of course children have summer camps. So it’s nice to get in this protection before all that hectic summer plans.
Steven Newmark 02:09
The CDC is not favoring one shot over the other, either vaccine is safe and effective, as we all know. And for parents who wonder don’t kids have strong immunity? Aren’t their bodies better protected against it? The truth is, it’s always good to arm up. If you’re going into battle, you want to have as much armor as possible, right? So get vaccinated.
Zoe Rothblatt 02:26
And I saw that the CDC did emphasize that children who have already had the virus should still get vaccinated to one, prevent against reinfection. We know that happens and you will also protect your family members and community members. I’m sure there’s people in our community have children around them that are really excited for children to get the vaccine and be able to comfortably hang out.
Steven Newmark 02:47
Yes, so 49 of the states enabled pediatricians to pre-order these vaccines for their children. So the 50th state was Florida
News Reporter 02:55
As COVID vaccine distribution begins for the nation’s youngest age group, the debate over whether or not kids should be receiving those shots continues to rage here in the Sunshine State.
Steven Newmark 03:05
In Florida, Governor Ron DeSantis was the only Governor not to allow doctors, pediatricians to pre-order vaccines so that they would be ready to go once full approval came.
News Interviewee 03:16
I had parents contacting or reaching out to me all of last week saying, “Am I going to have to go to Georgia?” That is the type of confusion that he created last week.
Zoe Rothblatt 03:23
Okay, so what does that mean now?
Steven Newmark 03:25
Now that approval has come, doctors are able to place their orders. However, they’re doing so directly through the federal government and not with the assistance of the state of Florida, which makes it a little bit of a harder hurdle. number one. And number two, since they did not pre-order, it means that they won’t be ready to go at the same time as the other 49 states.
Zoe Rothblatt 03:44
It’s just unfortunate to have a slow rollout, especially when you think healthcare workers got the first shots December 2020. Now it’s June 2022. We should have the rollout pretty seamless by now. But I’m glad that the White House is stepping in.
Steven Newmark 03:58
Look, we don’t want to talk politics too much. So I would say there was a statement by Governor DeSantis where he said, “I would say we are affirmatively against the COVID vaccine for young kids. These are the people have zero risk of getting anything.”
Gov. Ron DeSantis 04:10
We’re following the data. You look at these European countries, a lot of them don’t even allow Moderna for under age 30, or they recommend against it.
Steven Newmark 04:17
For a leader to come out and say that when it’s clearly not true, it’s unfortunate and it cuts into the confidence that we’re trying to build in these vaccines.
Zoe Rothblatt 04:28
Okay, I have some good news. The Senate passed major benefits expansion for veterans. So this bill would offer new health care and tax free disability benefits to as many as 3.5 million veterans
Steven Newmark 04:42
Under this legislation, the Department of Veterans Affairs would consider a veteran with any of 23 conditions ranging from brain cancer to hypertension, who was deployed to a combat zone during the wars of Iraq or Afghanistan to be automatically eligible for care by the VA.
Zoe Rothblatt 04:57
This is based on the presumption that exposure to toxic chemicals in the warzone caused the ailments. Many veterans are denied care and disability benefits that they deserve because it’s hard to prove this exposure. So the way that the legislation is written, it would automatically qualify and get this group the health care that they need.
Steven Newmark 05:16
We know how hard it is to prove disability. We’ve heard from people in our community about the grueling, long process of applying for disability and how you have to reapply constantly. It’s exhausting to continue advocating for yourself. So hopefully this bill expands access.
Zoe Rothblatt 05:29
Yeah, I would just reiterate, it is so exhausting to keep advocating when you’re just trying to take care of yourself and stay healthy. And then on top of it, you have to do all this extra work. It’s really a lot. The House is expected to pass the bill and then send it to President Biden to sign into law.
Steven Newmark 05:44
Well, for today’s episode, we wanted to talk about something that perhaps you have experienced or you’ve heard about others experiencing. You may have contracted a cold or a flu, and it feels a little different than it did pre-pandemic.
Zoe Rothblatt 05:56
For sure. Familiar viruses are definitely acting in unfamiliar ways. So let’s walk through it. What’s familiar and what’s not familiar?
Steven Newmark 06:05
Sure.
Zoe Rothblatt 06:06
So familiar; respiratory viruses and the flu typically pop up in the winter. Rhinovirus, the cause of the common cold, rarely sends people to the hospital, you know, you’re just sick at home. What’s unfamiliar is hospitals are seeing people come in for respiratory viruses, especially children. Some even had two viruses a co-infection. The flu, which seemed to disappear during our lockdown, came back this year in December 2021 and disappeared in January once the Omicron variant. COVID was spreading, now the flu seems to be coming back. Common colds are a little more virulent, seemed to be a little worse. I don’t know. Does this ring true for you, Steven? Did you get sick at all when we were hunkered down stay at home?
Steven Newmark 06:49
The weird thing about the pandemic during the lockdown phases, I didn’t get sick. And I was so used to my whole life going through a winter and always having a tickle in my throat or sneezing or what have you. And to have zero illness was just a very strange experience. I even asked one of our colleagues who’s a doctor, I said, “Oh, by the way, are our own immune systems going to be okay, when this whole thing is over? Are they going to forget how to fight viruses?” And he said, “I’m not really sure that, that’s something to think about. But let’s just get through this pandemic, first and foremost,” but yeah, absolutely. So I was definitely the opposite in that I didn’t get sick. I have two children. It’s weird seeing them not sick during the pandemic, because kids are always sick. They always have runny noses. So that was kind of strange.
Zoe Rothblatt 07:29
I had the same experience. I didn’t get sick when we were really hunkered down. And actually, a few weeks ago, I got extremely sick. And I was like, wow, I haven’t been this sick in two years. It felt so unfamiliar, uncomfortable, to say the least. It took my body for a shock. I’m glad that this is becoming a new story and people are looking into it. It’s like you mentioned researchers are looking at our behavioral changes, like the stay at home orders, the masking, social distancing, and whether those are responsible for these viral shifts.
Steven Newmark 08:00
I can’t help but wonder and I’m not a doctor, again, the tagline for a show, “I’m not an expert, but,” when I did get a cold recently, it felt worse than it normally did. And I couldn’t help but wonder if some of that was mental or psychosomatic in the sense that it’s been so long since I’ve been sick. Did I forget what it’s like to have a cold? Or did I forget, “Oh, it’s not so bad. I can deal with it.”
Zoe Rothblatt 08:21
It’s like that moment that your nose clears up and you understand how magical it is to breathe. Do you know what I mean like, and I took this for granted the whole time like this is so amazing to be able to breathe,
Steven Newmark 08:33
Right. Look, it’s definitely true. We’re hearing from researchers that our acquired immunity is lower for those of us who stayed in and did not get sick. And that can be particularly nerve wracking for those in the immunocompromised community.
Zoe Rothblatt 08:45
Yeah. And what you mean by acquired immunity, it’s like because we limited our exposure to COVID, we also limited our exposure to other viruses. So if you don’t get exposure to certain viruses and a time period passed is, you know, you may not be able to protect yourself as well because your immune system has lost that memory. And this leads to this out of season surges.
Steven Newmark 09:06
That means keeping an eye out on the diagnostic process for viruses that may not usually present at this time of year, like the flu, for example, which is still out there. Even though it’s June. Keeping your vaccines on hand. Usually the flu campaign is in the fall, but perhaps going forward, we may start to rethink that.
Zoe Rothblatt 09:23
Given all this, what is there to do? I would say it falls into a few buckets. The first one is stay calm. It’s viruses we know, it’s not like the novel Coronavirus. So while the patterns are different, we do know how to treat them and we have vaccines.
Steven Newmark 09:38
You mentioned vaccines. So focus on prevention, get your flu shot, get your COVID shots, make sure you’re updated on all recommended vaccines for your age.
Zoe Rothblatt 09:45
I would also say talk to your doctor just about your risk about how to stay safe. When things are swarming I usually talk to my doctor about what I should do and who I should call and what I should do about my medications and it’s comforting to get advice from a medical professional.
Steven Newmark 10:02
And also keep your mask handy. I was also very glib about this during the lockdown phase, I said, “I don’t really want to get the flu in the future. I’m going to wear this mask all the time in the winter when I’m out and about because why not, right?” Now that things are a little different, I’m still a mask wearer so I’m not at the phase where I’ve taken the mask off. But I would say I definitely when I had my cold, I was really making sure I was wearing the mask because I didn’t want to spread it to others. I felt that was sort of my duty to do that at least.
Zoe Rothblatt 10:29
Yeah, I wish everybody felt like that.
Steven Newmark 10:31
Yeah, yeah.
Zoe Rothblatt 10:32
Overall, just be patient. Experts anticipate that the viruses will fall back into patterns once the population immunity increases, and that will decrease what’s known as the force of infection from these viruses. That brings us to the close of our show. Steven, what did you learn today?
Steven Newmark 10:54
I learned what we have experienced anecdotally, you and I in terms of colds and flus acting strange and being in our environment, is happening around the country and indeed around the world. So that makes me feel a bit better always when something is normalized.
Zoe Rothblatt 11:08
So true. And I learned about some of the hurdles with getting the rollout of the kids vaccine.
Steven Newmark 11:15
Yeah, so we hope that you learned something too. We’d love to hear from you about your stories. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 11:25
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 11:32
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 11:37
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts, and definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 11:55
I’m Steven Newmark. We’ll see you next time.
Narrator 12:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 2 – New Test: Are You Immune to COVID?
You’re vaccinated, boosted, and perhaps even had COVID. But how much protection do you currently have from the virus or one of its variants? An international group of researchers have developed a new blood test to help assess a person’s COVID immunity. While the test is already used in Europe, the FDA is in the process of reviewing the technology.
“If there was an at-home version…I would take it every week. The idea of just knowing and I would feel safe,” says Steven Newmark, Director of Policy at Global Healthy Living Foundation.


S4, Ep 2 - New Test: Are You Immune to COVID?
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
I would love this test.
Steven Newmark 00:10
Me too.
Zoe Rothblatt 00:10
I hope to see it soon. That would be cool.
Steven Newmark 00:12
If there was an at home version, I would take it every day. Maybe not every day, I would take it every week. The idea of just knowing and I would feel safe. 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 00:32
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager 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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:50
Yes, and as a reminder, you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Talking Head Pain hosted by Joe Coe, who recently attended a migraine conference and gave updates throughout the conference from experts. Definitely check it out to stay up to date on all things migraine.
Steven Newmark 01:08
I think we have some news about our podcast, right, Zoe?
Zoe Rothblatt 01:11
We sure do. 10,000 listeners!
Steven Newmark 01:14
Excellent, excellent. 10,000. That’s a great number. Please continue to tell your friends where to find us. And thank you. Thank you.
Zoe Rothblatt 01:22
And definitely keep leaving comments. We love to read them. So let’s start with listener comment. This one is from Alex M. who wrote, “Great podcasts and engaging hosts.”
Steven Newmark 01:31
Thank you, Alex M. Maybe that is why we have 10,000 listens. So thank you, Alex.
Zoe Rothblatt 01:36
Yeah, we’ll keep boosting our ego. Well, we do have some news updates this week for our community. The biggest news I saw was that it’s a big week for children’s COVID vaccines. Pfizer and Moderna are both asking the FDA to authorize doses of their vaccine for kids ages five or six months to four or five years, which is really exciting.
Steven Newmark 01:57
As a reminder, children under five are the only group in the United States who remain ineligible to get vaccinated.
Zoe Rothblatt 02:02
So Pfizer’s vaccine is a three dose vaccine and Moderna’s is a two dose. FDA scientists released their analysis of both vaccines saying the shots appear to be safe and effective in young children. So you know, there’s no reason to think this wouldn’t go through.
Steven Newmark 02:18
Safe and effective. Those are the two words. The issue of course is getting this group vaccinated could be the most challenging part to come. Data from the Kaiser Family Foundation shows that while 18% of parents with kids under five are eager to get them a shot, 27% of parents said they will definitely not get their child vaccinated. In addition, more than half of parents said they do not have enough information about efficacy and safety.
Zoe Rothblatt 02:40
I get it. We saw with the older children age 5-11, their vaccines been available since around November 2021. And I saw for the Pfizer vaccine that only 36% of that population have received one dose and only 29% has been fully vaccinated. So it doesn’t totally surprise me that it would be challenging to vaccinate the even younger.
Steven Newmark 03:02
Right.
Zoe Rothblatt 03:03
Also just thinking about the timeframe that we’re in, Summer is approaching. And I know school is a big reason to get vaccinated. Maybe in a few months, when kids go back to school in the fall, we’ll see higher vaccination rates.
Steven Newmark 03:16
Hopefully that’s correct. We’ll see higher vaccination rates in the fall. And also look, once the vaccines get approved, at least it’s out there. Thankfully, for healthy children, the COVID pandemic was very different. It has mercifully spared the youngest.
Zoe Rothblatt 03:30
And then in other COVID news, I saw that Massachusetts is distributing another 2 million free COVID testing kits. And I just thought that was pretty cool. You know, the US government has been giving free ones. But here in New York, I haven’t seen any large scale distribution of free COVID tests. So I thought this was a fun piece of news.
Steven Newmark 03:49
I also got my third round of free tests from the US government. So I feel like I’m almost becoming a hoarder having all the test kits. Look, they’re good to have. I’m having a very mini family gathering this week. So that’s what they’re there for. So we’ll be using. Other quick news, the US lifted COVID testing requirements for international travel that is returning to the United States.
Zoe Rothblatt 04:14
This was pretty big news. You know, of course, the officials said that the CDC will do a reassessment of the rule in 90 days and then on an ongoing basis. Of course, if a new variant emerges, the CDC could reinstate it. So it isn’t the be all and end all. But for now, I guess like a little intimidating.
Steven Newmark 04:32
I think this one is tricky. I think the perfect rule if you could is so difficult to design. It’s got to be something like if you’re traveling in a certain jurisdiction where cases are above a certain threshold, the CDC will ask you to produce a test or something of that nature. Just from personal experience, I recently traveled internationally. And I had to come back and get the test and my mindset was, but I was only out of the country for a few days and I went to a place where the rates are actually lower than the United States, it doesn’t make any sense. I could have flown to anywhere in the United States and not have to take this test. And I found it to be quite a hassle as an American citizen trying to return home. That being said, when I got on that plane, it kind of hit me like, wow, this is a really safe place to be because everyone in here has been tested within the last 24 hours tested negative.
Zoe Rothblatt 05:20
I know that’s such a cool thought. That situation almost could be safer than going out to dinner, you know?
Steven Newmark 05:25
Yeah, absolutely. I think it’s just so difficult and complicated to design the perfect public health rule in this situation. So they’re going for broke, we’ll see what happens.
Zoe Rothblatt 05:35
You know, of course, our community always feel safer knowing people have tested negative that they’re going to be around and get more nervous if safety measures are dropped. And you know, that actually leads us into our next news, which is we have our own GHLF Quick Poll results from our Patient Support Program about summer plans and what activities people who are immunocompromised or live with underlying conditions feel comfortable doing this summer.
Steven Newmark 05:59
I love these quick polls, by the way, so give it to me.
Zoe Rothblatt 06:01
Shockingly, people are more willing to participate in activities compared to last summer, but only 30% said they feel more comfortable doing it. So you know, it kind of read, “Yes, things are opening up, and we’ll do them. But we really don’t feel comfortable.” And in the free response section, it became so clear that this is because there’s a drop in COVID safety precautions generally. So while things are open, there’s no more masks, there’s no more distancing, restaurants are operating at full capacity. So it does make them nervous.
Steven Newmark 06:31
That makes sense.
Zoe Rothblatt 06:32
Some of the most popular activities people plan to do are attend to outdoor gatherings, dine outdoors at a restaurant, and travel out of state. I definitely plan on doing all of these. So the poll results ring true to my reality. And like people in our poll, we’ll be paying close attention to case rates in the area and adjust plans, given the numbers.
Steven Newmark 06:52
I also plan on doing all of those things. I’m looking forward to it. So for today’s episode, we have a question. Have you ever wondered how much protection you have from COVID? You’ve gotten vaccinated, you’ve gotten boosted, perhaps you even had COVID. But how much protection do you currently have from COVID? That is an important question.
Zoe Rothblatt 07:15
To answer tha,t literally every day. I feel like I’m always wondering.
Steven Newmark 07:20
Well, people have tested antibody levels with their doctors. I never did that. Zoe, have you ever done that with a doctor?
Zoe Rothblatt 07:26
I actually did. We did it after the first two shots I tested and then after the third, and we did see a jump in antibodies, and then we haven’t really tested since. But obviously it’s not the full picture. You know, it can give an indication if you’ve had a certain level vaccine response. But there’s other part of your immune response that plays into this COVID protection aside from just antibody levels. And part of that is these T cells.
Steven Newmark 07:50
T cells are the white blood cells that work alongside a virus fighting antibodies to mount an immune response. An international group of researchers recently developed a new tool to help assess COVID immunity. And it’s a blood test that can measure T cells.
Zoe Rothblatt 08:04
This isn’t totally new. Last year, the US Food and Drug Administration granted Emergency Use Authorization to another T cell test, it just tends to be a little more labor intensive and time intensive. This new test that you’re talking about simplifies it just by using technology that’s widely accessible and can turn around the tests in less than 24 hours. This sounds like an overnight strep test type thing.
Steven Newmark 08:27
Right, and I should mention that this is already in use in Europe, and the FDA is in the process of reviewing the technology. So it’s not available here just yet. But knock on wood, it would be a fantastic tool to have in our arsenal.
Zoe Rothblatt 08:38
As we always do, what does this mean for our community, who live with underlying conditions and take immunosuppressive medications? How could this test like help us?
Steven Newmark 08:40
First, some immunocompromised people do not produce antibodies, even after a few vaccine doses, but they may have a T cell response. And this would help fill in that knowledge if these patients do have protections.
Zoe Rothblatt 08:57
It could also help to find how long protection lasts and how often boosters are needed. So for someone like me that knows I have a certain level of protection, I got my fourth shot at the end of January. Now we’re towards the end of June. And it would be neat to know where am I at, when’s the next time I need a booster and this test could help be a little more predictive in that and have that precision medicine is so cool.
Steven Newmark 09:22
Totally, folks who are immunocompromised, hopefully knock on wood have had the fourth shot or at least are heavily considering getting the fourth shot. We’ve spoken about this in terms of timing. When you get the fourth shot? We know for better or worse that the efficacy of the vaccines wane over time. So there’s this thought you want to have maximum protection before a certain event. If for example, you’re going to a wedding, you potentially want to time a vaccine related to that. However, if you have this tool, you’ll also be able to know whether you’re at full protection. If you’ve already had your fourth shot, you can test yourself and if the T cell response doesn’t look good, you may consider not going and conversely if the T cell response does look positive then you might go and feel a lot more comfortable about it, which is a good thing.
Zoe Rothblatt 10:03
It can just clue you into making that assessment and feeling more comfortable, relieving some of that stress, understanding how careful do I have to be? Or maybe I can be a little less careful this time and just probably enjoying the moment a bit more if you’re not so stressed about COVID.
Steven Newmark 10:20
Perhaps there would be less trepidation if you knew that your level of protection was very high.
Zoe Rothblatt 10:24
For sure, for me, I would love this test.
Steven Newmark 10:26
Me too.
Zoe Rothblatt 10:27
I hope to see it soon. That would be cool.
Steven Newmark 10:29
If there was an at home version, I would take it every day. Maybe not every day, I would take it every week, depending on the cost and everything. But I really would, the idea of just knowing and I would feel safe. And conversely, the opposite. If I knew the opposite was true, I would say, “Okay, N95 everywhere, no clowning around.”
Zoe Rothblatt 10:45
I think it would be exceptionally helpful as new variants emerge. And in that pattern where we hunker down a bit more and get really nervous. I think that having a test like this would be really good during those time periods.
Steven Newmark 10:56
Absolutely.
Zoe Rothblatt 10:56
But of course, I guess you just have to remember that experts are still trying to find out what the right level of protection is that makes a person unlikely to get sick. So it isn’t necessarily a yes or no answer, like, “Aha, you have the COVID protection,” it’s just sort of more data to calculate your risk. Because we don’t exactly know what is the right level of where you should be at. We have a hunch of what’s a good response, what’s a not so great response, but it’s not like you aced the test type thing. Well, Steven, that brings us to the close of our show, where we talk about our learnings for the day. So what did you learn today?
Steven Newmark 11:31
Well, I learned from you about GHLF’s quick poll and learning there’s still a high level of trepidation about certain activities. Hopefully that will start to dissipate, hopefully cases will start to go down, and some of the trepidation will start to dissipate.
Zoe Rothblatt 11:45
And from you, you got me thinking about how to design a good policy when we were talking about the lift of the testing requirement for international travel. And, you know, there’s a lot of thought that goes into it. And it’s sometimes not as easy to design the perfect policy versus just making a general rule.
Steven Newmark 12:01
Right. Well, we hope that you learn something too. We’d love to hear from you about what it is you’re dealing with as we enter this summer, what activities you may be planning for. Send your email to [email protected], or better yet, include a short video or audio clip.
Zoe Rothblatt 12:18
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 12:24
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 12:29
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 12:47
I’m Steven Newmark. We’ll see you next time.
Narrator 12:52
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S4, Ep 1- Guess What We Learned at a Medical Conference?
The Health Advocates share several takeaways from attending a medical conference on rheumatology. One was a “bombshell finding” that chronic pain is now identified as its own disease. Another is that people’s level of anger and social isolation have declined after COVID vaccines became widely available.
“It was really powerful to come to this conference and realize that there’s an abundance of research happening on chronic illness and COVID,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at Global Healthy Living Foundation. “And we really aren’t being left behind. People are studying and are caring.”


S4, Ep 1- Guess What We Learned at a Medical Conference?
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:09
It was really powerful to come to this conference and realize that there’s an abundance of research happening on chronic illness and COVID. And we really aren’t being left behind. People are studying and are caring.
Steven Newmark 00:23
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, Patient Advocate and Community Outreach Manager 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. But before we get started, we want to make sure that everyone takes listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:51
We sure do, and you can check them all out at ghlf.org/listen. This week, Steven, we’ll give a shout out to your other podcast called Gut Culture.
Steven Newmark 01:01
Great. Our latest episode features the IBDMoms and why building a community is so important for spreading awareness and information in the chronically ill community.
Zoe Rothblatt 01:10
So let’s start with a listener comment. Are you ready?
Steven Newmark 01:12
I am ready.
Zoe Rothblatt 01:13
This one came from Danny B., who wrote, “I feel so judged by a lot of the spaces I’m in. This podcast helps me feel seen.”
Steven Newmark 01:20
You know, this is the start of our fourth season. This season, we really want to dedicate ourselves even more so to our patients, because it’s our patients and our listeners who really make this worthwhile.
Zoe Rothblatt 01:30
I know, it’s been so amazing to see the growth of this show and see the comments coming in from people and we’re just so grateful to all of you.
Steven Newmark 01:38
And Macintosh for that matter.
Zoe Rothblatt 01:40
He’s almost a year old but is as puppy as ever. So pardon the interruption. Season Four, we’re more motivated than ever and just ready to jump in. So should we start with our news update?
Steven Newmark 01:53
Absolutely. Let’s do it.
Zoe Rothblatt 01:55
In big news on the Novavax vaccine, experts who advise the US Food and Drug Administration, the FDA, voted to recommend the agency to issue an Emergency Use Authorization for the vaccine.
Steven Newmark 02:07
It was a 21 to 0, with one abstention.
Zoe Rothblatt 02:11
I think it’s important to note that vote because you know, it just shows how far we’ve come in looking at these vaccines and recommending them. The fact that the overwhelming majority said, “It’s good to go, let’s get it out there,” was really impressive to me.
Steven Newmark 02:26
The big thing with the Novavax vaccine, it’s now our fourth vaccine in the United States. It’s not mRNA technology. That is, it’s old school technology, if you will. There is a very small slice of the population that was wary of the mRNA technology. There was also a small slice of the population that was unable for medical reasons to take an mRNA vaccine. So if this helps get a few more folks vaccinated in the United States, that’s a good thing.
Zoe Rothblatt 02:51
Yeah. And just bringing it back to our community who lives with chronic disease, we often rely on the people around us to be vaccinated. So if this gets more people vaccinated, that’s a huge win for our community. So Steven, you recently traveled outside the country. First big trip, I guess, since COVID. And what was it like, in the context of COVID, traveling?
Steven Newmark 03:15
Yeah, was my first big trip. I’m very grateful. I got to attend, on behalf of GHLF, a medical conference on rheumatology. I had COVID a few months ago, so I knew that I felt personally safe because I knew I was in that zone of heightened protection, if you will. And with that, I was able to have less anxiety and enjoy myself a lot more while I was at the conference itself.
Zoe Rothblatt 03:35
And for people like me, who are still a little bit uncomfortable with travel, I attended virtually, and it’s really nice that the conferences had that hybrid option.
Steven Newmark 03:44
Yeah, we attend these medical conferences to, number one, give the patient perspective. We provide some of our research learnings, but we’re also there to make sure that the patient’s voice is heard. It’s one thing for doctors to speak to other doctors about how to deal with rheumatism. But it’s another thing to hear directly from patients and patient groups like ours.
Zoe Rothblatt 04:03
100%, it’s so important. And I did notice more conversations this year than in the past about including the patient voice.
Steven Newmark 04:10
Yes.
Zoe Rothblatt 04:10
And I would say the other part of it is just, you know, we’re doing it right now but we also did it on Twitter throughout the conference is putting the information out in an easy format that people can read up on and you know, get more informed on their health, ultimately have better conversations with their doctor, and advocate for themselves. You know, we’re The Health Advocates, how do you best advocate? With information. And we’re there to grab the most interesting pieces of information and helpful things through the lens of patients and spread it out.
Steven Newmark 04:38
There was a lot of discussion about anxiety and depression for patients, long COVID and its implications for autoimmune patients.
Zoe Rothblatt 04:44
So that was a highlight for me, the COVID. That felt, you know, the most newsworthy. Some of the studies even felt a little bit outdated on vaccines, because I’m like, you know, these were conducted a year ago and now we’re here and it’s a little bit different, but there was a lot on long COVID. There was a lecture on what is the rheumatologist role in treating COVID, long COVID in rheumatic disease patients. And for me, I guess, we often talk about how we feel left behind and the news isn’t highlighting. So it was really powerful to come to this conference and realize that there’s an abundance of research happening on chronic illness and COVID. And while it may not be making headlines, we really aren’t being left behind when you take a look at it and people are studying and are caring. And that was really important to me.
Steven Newmark 05:29
Outside of COVID, I would say the number one takeaway for me that I thought was somewhat of a bombshell, if you will, or as much of a bombshell as you can get from a medical conference, there was discussion of chronic pain being identified as a disease on its own, which would really be groundbreaking. So I thought that was fascinating.
Zoe Rothblatt 05:45
Yeah, they talked about how it’s a continuum and there’s different types of chronic pain, and we can’t just brush it aside, it really is legitimate. I think this conference overall helped me and patients feel seen, it felt like the patient voice was really coming in. There was a lot of sections on the importance of involving more patients in research. At the end of the day, the patient experience is really what matters and what you’re feeling. And you’re really a part of your care team. And I think that when we talk about how you advocate, it’s also getting involved in research. That’s part of being an advocate is paving the way for future patients to have better care, because you’re lending your experience.
Steven Newmark 06:26
That’s a great way of putting it. You’re advocating on behalf of yourself, other patients, but probably most prominently future patients, to have ultimately a better experience and a better life trajectory. And that’s sometimes difficult to wrap your head around.
Zoe Rothblatt 06:35
Of course, they had sections that were very sciency and focus on actual clinical learnings in disease. But I felt like it was a very well rounded discussion in the fact that sexual health was addressed, fatigue was addressed, diet and exercise was addressed, the role of your gut and inflammation tying in other conditions and the overlap there. So I felt like the researchers and doctors and these groups around the world are paying attention to the full lifestyle and experience of patients.
Steven Newmark 07:07
And we as an organization, as folks know, we do a lot of research. And we’re grateful for the research that we’re able to do. And we presented several of our research projects, and one of them that I had an opportunity to see from our colleague, Kelly Gavigan, was to determine whether patient recorded scores for mental, social, and physical health, how it fluctuated during the COVID-19 pandemic for people living with autoimmune diseases. And the takeaway was that the scores for anger and social isolation, they worsened over the last eight months of 2021. That essentially corresponded to the pandemic, but scores for anger and social isolation started to decline and got better after the vaccines became widely available in the United States. That was good to hear, I guess.
Zoe Rothblatt 07:50
Yeah, that feels like it rings true for me. It’s always nice when you have the data to support your personal experience. And I think that was a huge highlight of this conference.
Steven Newmark 07:59
Yeah. And it’s very important for the medical providers, at this conference and beyond, to hear the mental health plight that patients go through, or have been through and continue to go through. Because you can’t just focus on a patient’s physical health, you really have to take a patient in the totality. So it’s important for us to present these findings, which is great.
Zoe Rothblatt 08:19
100%. Mental health and physical health are equally as important. You can’t prioritize one over the other. They’re both there. And I liked that each year, we’re researching more and understanding that more because it really does tie into each other and one impacts the other tremendously. If you want to learn more about this, definitely head to the CreakyJoints Twitter, or creakyjoints.org. And you could read more about the studies that our organization did.
Steven Newmark 08:45
Absolutely.
Zoe Rothblatt 08:46
So Steven, there was a lot of learnings today, but I guess, share one.
Steven Newmark 08:51
I liked what our commenter wrote, Danny B., who wrote about being judged, feeling judged by some many spaces, and it is a reminder that it is difficult at times to go through life with a chronic illness. But it is also important to have that community that we have helped to build here at GHLF. So thank you, Danny, for that reminder.
Zoe Rothblatt 09:10
Yes, thank you, Danny. And I learned from you just now about the study led by Kelly in our organization about the emotional and mental impact of COVID.
Steven Newmark 09:20
Well, we hope that you learned something too. We’d love to hear from you about your advocacy stories or anything else that’s on your mind. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 09:32
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 09:38
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 09:43
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 10:01
I’m Steven Newmark, we’ll see you next time.
Narrator 10:06
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network
S3, Ep 21- It’s Time to Start Your Wellness Evolution
What is your trilogy of living a healthy life? Is it the body, mind and soul or perhaps exercise, nutrition, and mindset? Whatever it is, we are all part of an evolution of wellness. In this episode, we introduce you to a new GHLF podcast, “Wellness Evolution” with its hosts Angel Tapia and Danielle Ali.
“Your community is such an essential part of your wellness,” says Danielle. “We have an opportunity to bring the community together to discuss mental health, like the physical wellness, and how that can change the experience that we’re having as a patient,” adds Angel.


S3, Ep 21- It's Time to Start Your Wellness Evolution
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Danielle Ali 00:09
Your community is such an essential part of your wellness.
Angel Tapia 00:12
We have an opportunity to bring the community together to discuss mental health, like the physical wellness, and how that can change the experience that we’re having as a patient.
Zoe Rothblatt 00:24
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, Patient Advocate and Community Outreach Manager at GHLF. And yes, you heard that right. It’s just me, Zoe, this week. But don’t worry, because we have not one but two guests. As you know, our goal here is to help you understand what’s happening in the healthcare world to help you make informed decisions to live your best life. Before we get started, we want to be sure that everyone takes a listen to all of GHLF’s brilliant podcasts. We have so many to choose from, and you can check them all out at ghlf.org/listen. Our shout out this week will be to Wellness Evolution. We have both of the hosts here with us today to talk more about mental health and advocacy. And we look forward to that conversation. But before we jump in, let’s start as we always do with a listener comment. This one is from Casey A., who wrote, “I feel so comforted by this podcast.” Well, thank you, Casey, we feel so comforted by your comment and all of our listeners. Okay, let’s jump in. Welcome Angel and Danielle to The Health Advocates. Angel and Danielle are the hosts of Wellness Evolution, a new GHLF podcast, and are here today to talk about caring for your mental health while advocating. So why don’t you both introduce yourself and a little bit about the podcast. Angel, welcome.
Angel Tapia 01:44
Thank you so much for the invitation, Zoe. I am a Patient Advocate and Hispanic Community Outreach Manager with GHLF. The podcast was really created as a way to have a conversation with individuals and healthcare professionals to talk about really what is wellness, what is our well being challenges, what are the triumphs, and also to learn from stories of those that have experienced it, those that help us get through some of those situations, and really learning the relationship between health and wellness.
Zoe Rothblatt 02:14
I’m so excited to learn from you. And we also have your co-host here, Danielle. Welcome, Danielle.
Danielle Ali 02:16
Thank you so much, Zoe, for having us on here on The Health Advocates. And hello, everyone. I’m Danielle, the System Analyst at Global Healthy Living Foundation. I think the beautiful aspect of our podcasts is that it ties together real stories and challenges that everyone faces and has a simple wellness practice that of course can not eliminate any of the challenges that you may be facing, but can help bring you a little bit more balance in facing those stressors that life has to offer, especially as a person living with a chronic illness.
Zoe Rothblatt 02:50
Thank you both so much for joining us. I want to talk a little bit about the intersection between advocacy and wellness and learn from each of you what advocacy means for you and how exactly it played a part in making your podcast, Wellness Evolution. Danielle, if you’d like to start.
Danielle Ali 03:06
Advocacy means to me is telling your side of the story that can help a bigger picture evolve. And I think wellness has a part in that because you cannot be a good advocate if you’re not a good advocate for yourself. Self care, knowing when things are a little bit too much. There’s advocacy burnout, that is very, very real. And if you don’t give yourself back the caring that you need and the betterment that you want to see in the world, then you can’t advocate for the better world.
Zoe Rothblatt 03:36
Wait a minute, advocacy burnout? Tell me a little bit more about that.
Danielle Ali 03:40
Advocacy burnout for me, I saw really the first time in 2020. There was a lot of advocacy in so many different areas, a lot of people were more aware, especially in our healthcare system of things that were going wrong for a lot of groups. So people were advocating and people were taking this like globalized responsibility to solve these big problems that as individuals we might not be able to solve, but we feel like we do. And when you have that passion with something, it can exhaust you. It can exhaust you mentally, it exhausts you physically, because now you’re giving so much energy to this very big problem and not at all to yourself. So just like a burnout in a job when you do too much of a thing that can cause a lot of different stressors, you get burnout.
Zoe Rothblatt 04:25
For sure. And I always say that you’re living with a chronic illness, you’re already managing that plus the burnout plus everything else. It’s a full time job in and of itself. And I really do feel like many in our community get burned out so easily. We have the Spoon Theory which says that you only have a number of spoons per day. And a person with chronic illness starts off with less spoons and each thing you do requires a spoon and that’s one less spoon for the next thing you have to do. And I think that what you’re describing is part of that Spoon Theory where eventually you run out of spoons and it’s just continuing to take when you don’t have anything left to give. And Angel, the portion of the podcast that you host is longer form interviews. Do you have any advice as our wellness expert on coping with burnout?
Angel Tapia 05:11
I love that you said wellness expert, because I think we all are that in a way. We know what feeds us, what helps us. And I think it’s learning what we need and how to be consistent in that. And in talking to the patients, there’s always this common thread of being given either inadequate unfair treatment or care, whether it be through insurance, whether it be communication with family, at work, relationships, or friends.
Gina Hessburg 05:36
Going through this journey, I’ve just learned a lot and have been overwhelmed by how difficult it can be.
Angel Tapia 05:44
So really finding a way to advocate for yourself, I know there is an inadequacy here, finding the strength then to have that voice to share it with someone. And advocacy can be as large as doing something through 50 State Network and advocating with legislatures or just advocating within a relationship with family or friends. So it’s really I think about speaking up when you feel that there is something that affects you mentally, physically, emotionally, and you want to have to share your story, which is the difficult part of it. But once you do, that really opens up for people to learn more, be supportive, and engage in what you’re going through.
Zoe Rothblatt 06:20
Speaking up can be really nerve racking and cause a lot of stressors. In your interviews, did you come across any tips on how to take care of yourself while you’re experiencing these stressors?
Angel Tapia 06:31
One thing I realized is that the less we say, or the less we ask for, the less that we then receive. So I think the importance of speaking up will show us that we can yield better results. Within the Hispanic community, we have a Patient Leaders Group, and what I’ve really noticed is that giving them the words to be able to speak to their physician or speak to their family about their chronic illness condition provides a way for them to also feel some resilience and pride in knowing their story, having some ownership in what their experience is and what they’re able to teach others. And I think that that’s the best way to advocate for yourself is you have to ask those questions of others, you have to provide information and education for those around you. It can be challenging, but the more that you do it, I think you’re more comfortable with addressing these issues in different platforms.
Zoe Rothblatt 07:25
For sure. I totally agree. Practice makes perfect. And you know, I think that the word wellness gets tossed around a lot these days. And I love how you guys are really touching on the advocacy portion of wellness, because I think that’s something that’s not discussed and giving tangible advice to people. Part of your podcast is these breathing exercises, Danielle, that you host.
Danielle Ali 07:48
Deep breathing is a tool used in meditation. However-
Zoe Rothblatt 07:52
Can you talk about how you decide to do these, what benefits it has, and how it just plays a role in your wellness?
Danielle Ali 07:58
It was kind of brainstorming the entire podcast and in thinking about how there’s so many, especially in like modernized wellness spaces, podcasts and shows about what wellness means and meditation and breathing and using all these terms very interchangeably to sell as a whole package. But in my own personal journey with chronic pain as well as mental health, these wellness practices came across my path and I kind of digged a little bit deeper because in more older traditions, they were used separately but together and to see how that is. When Angel and I were speaking about it, the key was with these breathing exercises to get people to see breathing as a health benefit and not something that’s always tied into meditation because I think when people think meditation and or mindfulness, they get a little bit taken aback because it seems a little complex or abstract, where breathing is something that we do and you can manipulate your breathing to help you ground yourself in a specific emotion, to help let go a specific emotion. We all have emotions, and especially when you’re dealing with a chronic illness, chronic pain, those emotions could inflame whatever symptoms you’re having. So if you can control or help feel out the emotions that you need to feel out, it can help your overall pain and help your overall health wellness. Wait a moment.
Zoe Rothblatt 09:24
And Angel, what was it like for you when Danielle came to you with this idea and then hearing the breathing exercises recorded as a final episode? What was going through your head at that time?
Angel Tapia 09:35
I think it just made a lot of sense to have the breathing exercises as a part of the podcast because the things that we do automatically, we can easily take for granted and breathing is one of those things. It just happens. We don’t have to think about it. And so sometimes we don’t really realize that putting an effort into breathing can be so helpful. So when you take that moment and you focus on your breathing, you realize how good it does feel, how it does clear your mind for that moment, how your body does immediately relax, and you have an actual exercise that you can do that has immediate results. Who doesn’t love that? I get to try a breathing exercise and in that moment, while I am present, I’m feeling that relaxation. And it was just a really great fit, because we do talk about some heavy mental, physical health aspects that are challenging for folks. So to be able to bring in the breathing exercise as a way to just kind of release after listening to some of this intense feedback or stories, I think is just a great way to move on from the next task at hand.
Zoe Rothblatt 10:39
I can testify to what you’re saying that you get this immediate benefit. When you guys had first shared with me the podcast episode, and then I listened to the breathing. I actually had a meeting shortly after. And I realized I went into that meeting, feeling just so much more centered and calm. It just gave me a break in the day, to focus on myself and just be in the moment. And I think we need that a lot. We need that within the context of dealing with chronic pain, like you mentioned, Danielle. We need it with advocacy. It’s a hectic day, take a break.
Angel Tapia 11:08
It’s also okay to just do what you can. And I think we become our harshest critics at times when we’re trying to advocate for ourselves or for others. There’s this book that really got me into the new thought and wellness idea is The Four Agreements by Don Miguel Ruiz, and one of the agreements is to always do your best, whatever that may be in that moment. So we need to make sure that we don’t push ourselves to exhaustion, we give ourselves kudos for whatever we’re able to do within the time that we have with the energy that we have in that moment. And the interview that we have on Wellness, Evolution, the “Advocacy and My Chronic Illness”, which is raising your voice for yourself and others just touches on that burnout and how it can take a toll on your mental health. It was very heart opening raw conversation that really sheds a light on the importance of support when you’re an advocate and also the importance of your mental health and reaching out to others when you need support.
Zoe Rothblatt 12:10
Did your view of wellness change when you started doing this podcast? Danielle and then Angel.
Danielle Ali 12:16
Such an interesting question, Zoe. I think the whole point of the podcast is that we’re ever changing. And that wellness is your evolution. Every day, you come with new information from the moment you wake up to the moment you go to sleep. Work, social, health wise, every piece of information that you receive is going to impact on how you view wellness, whether it stresses you out, you might learn something new. And I think one of the things I remember telling Angel in the beginning of this doing the breathing exercises was, “I can’t do this alone, who am I? I’m just learning all this stuff. I’m a student, how am I going to lead these things?” And trying to look for experts. And then the experts not lining up with exactly what we’re trying to say and do in the chronic community. And Angel’s just being like, “You being a student is more than enough because we’re all students.”
Angel Tapia 13:05
And that was very true, because we had to twist her arm to just figure out that in seeking we’re learning and that taking the listeners on that journey, I think is the best way to do it. We don’t want to sound like experts, we want to invite experts to speak but we always want to have that curiosity and sharing things as we’re learning it because I think it’s a great way to show everyone that you could start from anywhere and the skills that you gain as you’re doing these practices build upon each other. And that’s why I say we are all experts in our own way we know what makes us feel good. We just have to try it. And then after we do, be consistent in those practices when we start seeing those positive results.
Zoe Rothblatt 13:52
By the way, that’s something we talk about in advocacy all the time, you know the power of sharing your story, and that each of you has an important story. And that legislators and their team can go and look up the facts and read the bill easily. But what they can’t look up is your story if you don’t say it. And you know, just showing up, Danielle, showing up like you showed up for this podcast and trying it out and just sharing your story, it’s really impactful. And I think that when people listen to your podcast, they will feel that these are real people sharing their heart from their wellness journey. And I’m just so excited. I know for me when I’m feeling that burnout and that lag I get so energized from hearing patient stories. I saw a comment from someone this morning that said that one of our resources helped them get a diagnosis and that they felt empowered to speak up and ask for the right blood tests and advocate and it’s just so important that we keep putting out this content and helping people and I think that you guys are touching on something really special because there isn’t a lot about wellness and chronic illness that goes deep. And I think you guys go deeper than a lot of other resources go. And that’s what patients really want. They really want to connect and understand and have people speaking to them that also live in chronic pain that really understand their journey.
Angel Tapia 15:09
And one thing I did notice in a lot of the interviews is that everyone’s story is unique. But there are so many things that make us alike, and we can always find something in someone’s story that we can relate to whether it is a challenge or a triumph. So being able to connect, knowing that we all want to feel well, and we all want to evolve, I feel that this is a great podcast that just intersects all of that. And advocacy is a result of us sharing these stories, and finding ways to support each other, and giving people an opportunity to really share their stories. So I appreciate that we have an opportunity to bring the community together to discuss things that maybe fall outside of just the chronic illness scope, but do bring in the other areas that affect us like the mental health, like the physical wellness, and how that trinity can change the experience that we’re having, as a patient, as a caretaker, as a supporter of someone with a chronic illness and so on.
Zoe Rothblatt 16:12
Wow. It’s really impactful. Thank you, Angel. And thank you, Danielle. My last question for you both is something that we’ve touched on today. What does community mean for wellness? How do they work together, intersect? Danielle, let’s start with you.
Danielle Ali 16:26
I do think community and wellness go hand in hand. You hear the word support system, and a lot of things with a lot of different health care providers, they always ask you if you have a support system. And that is because your community is such an essential part of your wellness, we are social beings. Even if you identify as an introvert, at some point, you crave some sort of social aspect, or you need to engage in some sort of social aspect. And I think community is where we can find bits of ourselves in other people. One thing for me and my personal journey within my community and going through my own healing journey on a mental health side, they showed me even though resilience has a very negative connotation, because you have to be forced to be resilient, and that can cause stressors. But in my resilience, I am so kind to everyone else and showing me how kind I am to everyone else and how unkind I was being to myself by not giving back to myself, was something I was so thankful for my community for my support system. So your community really is not only just people to lean on when things are hard, but also they’re to show you and kind of give you a mirror on just, “Look at you. You’re an amazing human being and you got a lot going on. And sometimes you have the thoughts in your head, but you need the people around you.” And they don’t have to intentionally do it. They do it in little small ways. And that brings that life into where it’s like, “Wow, I am a good person, and I should be giving back to myself more and I am dealing with a lot.” And that helps in that wellness aspect of feeding off of the people around you and the people that care about you.
Zoe Rothblatt 18:01
Right, totally agree. Angel, how about you? What does community mean to you?
Angel Tapia 18:05
I agree with Danielle, I think it’s the parts that come together to help us feel supported. Because it’s not just about the disease, it’s about the illness experience. And that means that we will go through things with a chronic illness or a mental illness or other health challenge as a mom or as a sister or as a co-worker, there’s just so many facets of who we are as individuals that when we look at a chronic illness, and we look at mental health, and we look at physical wellness, there are still so many subsets of that, that there are communities there to support us because of the experiences that we’re going through that can relate to others. We have an interview with Rebecca Council for Wellness Evolution, and we talk about the LGBTQ community and how that has been a support for her to be able to get through her chronic illness. And you see the interconnectedness that the differences that we have and the similarities that we have, can create a sense of support in so many different ways. There are really layers to it, because we need support for chronic illness. But we also need support for other individualities that we have. And building a community that is multifaceted is very important to make sure that we are addressing all of the areas that give us the overall health wellness experience that we all deserve.
Zoe Rothblatt 19:32
I totally agree with both of you. Thank you both for sharing. I feel as The Health Advocates, we’ve created a bit of a community here and it’s really nice to be able to invite you guys on and chat with you and create our own little community. I think that community doesn’t always have to be so large. You can keep it as a small group and really have the people that you rely on and depend on and you never know when you’re going to find great conversation and meet new people. And I think it’s really special that we’re able to sit down and talk together.
Danielle Ali 20:02
Thanks for having us, Zoe.
Angel Tapia 20:03
Thank you so much, Zoe, for having us on today. I encourage everyone to please visit Wellness Evolution podcast to listen to all the great stories and learn more about wellness and your evolution.
Zoe Rothblatt 20:15
Thank you guys so much for joining me on The Health Advocates. That brings us to the close of our show and at the close of every show, Steven and I usually share learning so I will share that today I learned from both Danielle and Angel how important it is to just take care of yourself while you advocate and how every little bit really does count and you don’t need to go so large scale. You can really start small and build up and just take care of yourself. So I hope you learned something too. I’d love to hear from you about your wellness and advocacy stories. Send your email to [email protected] Or better yet, include a short video or audio clip. And who knows whatever you share maybe included in our listener feedback portion of future episodes. Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week. Well 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 like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt and I’m excited to be joined by Steven next week for our episode. We’ll see you next time.
Narrator 21:32
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 20- Don’t Let Them Gaslight Your Health
People living with chronic pain are often misunderstood. Their ongoing struggles cause those lacking compassion to gaslight them and minimize their symptoms. In this episode, we meet Catina Morrison, who is using her own experiences living with rheumatoid arthritis, fibromyalgia, and endometriosis to teach others how to stand up and self-advocate to overcome people, pain, and stigma.
“People who complain of chronic pain are often told that it’s in their head. “Oh, it can’t be that bad. It’s just a bad period. Aren’t period supposed to be painful?” No, they’re not,” says Catina Morrison, Corporate Nurse and Chronic Illness Coach.


S3, Ep 20- Don't Let Them Gaslight Your Health
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Catina Morrison 00:09
People who complain of chronic pain are often told that it’s in their head. “Oh, it can’t be that bad. It’s just a bad period. Aren’t period supposed to be painful?” No, they’re not.
Zoe Rothblatt 00:22
That’s like the biggest, like, eye opener when you learn stuff like that.
Catina Morrison 00:25
Exactly.
Steven Newmark 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 Steven Newmark, Director of Policy of the Global Healthy Living Foundation.
Zoe Rothblatt 00:38
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:43
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. But before we get started, we want to be sure that everyone takes a listen to all of our great podcasts here at GHLF. You have so many to choose from.
Zoe Rothblatt 00:56
And you can check them all out at ghlf.org/listen. This week, I wanted to do a quick shout out to Talking Head Pain. There’s new audio guides that are part of this series and the latest one was about different treatment options available for migraine. And it’s just a really informative listen. So definitely check it out.
Steven Newmark 01:14
I look forward to that.
Zoe Rothblatt 01:15
So Steven, are you ready for our listener comment?
Steven Newmark 01:18
I am ready.
Zoe Rothblatt 01:19
This one is from Taylor G who wrote, “The energy is great. I always feel like I’m in the same room with the hosts.”
Steven Newmark 01:25
That’s fantastic. Thank you, Taylor for writing in. We’re all a community together.
Zoe Rothblatt 01:30
This week on The Health Advocates, we have a special guest here with us. Catina Morrison, who’s a Corporate Nurse and Chronic Illness Coach.
Steven Newmark 01:37
Catina is here to talk about our advocacy, and how she helps women with chronic illnesses advocate for themselves.
Zoe Rothblatt 01:43
And we look forward to that conversation. But first, we have some news updates for our community. Steven, the US has reached this grim milestone, we’ve surpassed 1 million COVID deaths.
Steven Newmark 01:53
It’s horrific. A million people, that would be the entire population of San Jose, California.
Zoe Rothblatt 01:58
When you put it like that it’s really hard to believe.
Steven Newmark 02:00
It feels like the numbers are just numbing, they have no meaning anymore.
Zoe Rothblatt 02:04
Just quickly remember, in the beginning of the pandemic, when the New York Times had put the list of everyone that had died so far, that was astounding.
Steven Newmark 02:11
I remember that.
Zoe Rothblatt 02:12
And there was a list of names all over the front and back page or whatever it was, I can’t believe it’s like we’re still adding to that list.
Steven Newmark 02:19
In some good news this week, Novavax is confident that their COVID vaccine will receive FDA authorization in June.
Zoe Rothblatt 02:26
This is great because this is another shot on the market. And this would offer a choice to those who are not vaccinated who didn’t want an mRNA vaccine because this uses different technology than that.
Steven Newmark 02:38
This uses essentially the same technology that we’ve used in the past for past vaccines. So there are still a handful of folks who are vaccine hesitant, this is what they’ve been waiting for. So that’ll be helpful.
Zoe Rothblatt 02:48
And Steven, you’re a parent, I saw booster shots were authorized for kids.
Steven Newmark 02:53
Yes, yes, yes, yes, yes. It’s a good time to get boosted with Omicron, the BA variants raging. So that’s really good news for children, ages 6 to 12. I’m excited for that.
Zoe Rothblatt 03:03
And lastly, the third round of free COVID tests are available, which makes me so happy. All US households are eligible for this third round of tests. And each order now is eight tests and previously had four. So we’re getting more and it’s expanding its reach.
Steven Newmark 03:19
That’s good.
Zoe Rothblatt 03:20
Okay, well, let’s jump into our guests. Hi, Catina.
Catina Morrison 03:24
Hello. It’s nice to be here. Thank you for having me.
Zoe Rothblatt 03:27
Thank you for being here with us.
Steven Newmark 03:29
Thank you. So just the briefest of introductions. Catina Morrison is a Nurse and Chronic Illness Coach. After decades of symptoms, such as chronic pain and fatigue, she was diagnosed with rheumatoid arthritis, fibromyalgia, and endometriosis in her 30s. Her experiences with the healthcare system fueled her passion for assisting women with autoimmune diseases to reach their best quality of life so they can stop hiding and start thriving. She helps women with chronic illnesses uncover their purpose by doing what we’re meant to do, walk in their power by advocating for themselves in all aspects of life, and achieve strategic growth in health, career, and business.
Zoe Rothblatt 04:03
I wanted to start off by asking about what advocacy means to you and how you found your voice in order to help others.
Catina Morrison 04:11
Advocacy to me is so vital in all aspects of life but especially in our health. And being your own advocate to me means finding your voice and using it in order to be an active participant in your health and to take the steps to ensure that you’re receiving the quality of health and care that you deserve. In many cases, we find that people find it uncomfortable, especially those of us who live with chronic illnesses, to actually speak up for themselves, advocate for themselves, to make simple requests. Many are experiencing things such as medical gaslighting, and the sense that their feelings and symptoms are minimalized. But when we learn to advocate for ourselves, we’re ensuring that we are heard, that we can stop hiding in a sense by being afraid of speaking up for ourselves and start thriving in all aspects of life. And I found that to be the case, for me personally being someone who has lived with multiple chronic illnesses for over 30 years, and being a registered nurse and working in the healthcare system for more than 23 years now. I know the value and the importance of it personally and professionally. So that’s why I’m out here doing my best to encourage as many as possible to learn to advocate for themselves. Find your voice and use it because you deserve to get the best care possible.
Steven Newmark 05:29
Can you give an example, perhaps, of what you mean by advocacy?
Catina Morrison 05:32
If we take my experience, being someone who started having symptoms at the age of 11, and was not diagnosed until I was in my 30s. It took me some time to find that voice and to effectively use it, you can see. And that’s why I try my best to minimize the amount of time it takes others. But when we think about health advocacy, it means being able to openly and honestly and transparently speak about what your particular circumstances are. What are your symptoms? What are your feelings? What do you need from your healthcare provider? If you’re not comfortable with the answers that you’re receiving, getting the answers and asking for them to place them in as simple of terms as possible so that you can understand it clearly. And asking them to be a member of your team, not a dictator of your health. So that means understanding what type of care do you want. It actually means you doing some self evaluation, too. Do you want natural, holistic methods, for example? Because we live in a time where people are trying to go as natural as possible, because they know the effects that medications can at times have. Do you want your doctor to really listen to what you’re experiencing, and provide you a assessment of all of your options, and then allow you to say exactly what you want out of what they provide them and be willing to respect your wishes? Are you looking for kindness and compassion and the type of treatment and care that you’re receiving? So advocating for yourself in all aspects of your health. Are you actively being a participant? Are you also a member of your healthcare team? Making sure that you are feeling comfortable and confident that you’re receiving the best quality of care because we all want the best quality of life. It starts oftentimes with ensuring that we’re getting the best health care possible.
Zoe Rothblatt 07:23
I love what you’re talking about, that you as a patient have such an important role in your care and a seat at the table. And it really should be a team effort. And no one else can tell you how to live your life. It’s you and your life and you want to do what’s best for you. I wanted to pick up on something that you were mentioning before about medical gaslighting. First, maybe define what that means for you? And second, what do you do when that’s happening?
Catina Morrison 07:49
I think this is such an important topic because it’s a term that’s becoming more prevalent nowadays. It’s so important that we recognize our rights when we are before someone who is medical gaslighting goes or we’re being medically gaslit. That means that your symptoms and your feelings, what you’re openly explaining that you’re experiencing is being minimized. For example, terms like it’s in your head. People who complain of chronic pain are often told it’s in their head. “Oh, it can’t be that bad.” For those of us who have experienced a lifetime of endometriosis or fibroids, ovarian cysts, women health concerns, you might hear terms like, “Well, it’s just a bad period. Aren’t periods supposed to be painful?” No, they’re not.
Zoe Rothblatt 08:38
That’s like the biggest like eye opener when you learn stuff like that.
Catina Morrison 08:42
Exactly. So that’s what medical gaslighting is, is when your symptoms and things that you are really feeling is being turned into something very minut or being considered a mental health concern rather than an actual physical issue.
Zoe Rothblatt 08:57
I’ve experienced it. You’ve experienced it. I know many in our community have and it just so unfair.
Steven Newmark 09:03
Can you tell us a little bit about your podcast, Inflamed Sisters Thriving?
Catina Morrison 09:08
Hello! What is an Inflamed Sister? I started the podcast in a hope to unite women and others who are suffering with chronic illnesses and knowing that it is still possible to thrive despite living with chronic illness. I named it Inflamed Sisters Thriving because in a sense when we live with rheumatic diseases or inflammatory diseases like rheumatoid arthritis, as well as fibromyalgia, lupus, so when you live with those types of conditions, in a sense, you’re inflamed. But it’s not something that we should be ashamed of. It’s something that is a part of who we are. It doesn’t define us but it is a part of who we are. So I am so excited to have this podcast as a way to not only have guests on who share their experiences transparently in order to encourage inspire others, but also to raise awareness to things that affect people who live with chronic illnesses and ways that they can learn to cope. And like I said before, in a sense, stop hiding what they’re going through and learn to live and be okay with being vulnerable, transparent, and still being able to learn to live happy, fulfilled lives, in spite of their health conditions.
Zoe Rothblatt 10:24
Congratulations on the launch of your podcast. It’s so exciting. I did have a listen. And I’m just so excited for new episodes to come out and see where it takes you.
Catina Morrison 10:32
Thank you, I appreciate that.
Zoe Rothblatt 10:37
How did you decide to make your work female centric? I was feeling a little inspired by what you were just talking about where your pain is dismissed. And I think that often as a woman, you’re told, “Oh, you’re complaining too much, you’re this, you’re that.” And it’s hard to be a woman in this world. And it’s hard to be a woman living in chronic pain.
Catina Morrison 10:55
We have to recognize the type of society that we live in. It’s a patriarchal society in which generally women are gaslit in a sense, or minimized as far as what their feelings are. And when we talk about our pain, and our concerns, and our issues, it’s looked at as, “You’re complaining too much, oh, that’s what women do.” But these are real issues. While what I do and talk about can help both men and women, I chose to focus in this area, because having the career that I’ve had in health care, I see how women are moreso impacted in the sense of not being heard and having chronic illnesses and conditions that don’t get the awareness and the research that it deserves. I want to raise awareness to it. And I want women to join their voices and forces together to know that it’s okay for you to say, “I deserve better and I want better.” And it’s okay to know that just the way that you hire a doctor, you can also fire them. Second opinions are okay, women. We don’t have to be tied to just one doctor for the rest of our life, we can have many choices. In that sense, I chose to focus in on women because of my own history with health, what I’ve seen in healthcare, and being a nurse, I know that this population needs others who are willing to advocate for them and push them to become their own advocates as well.
Zoe Rothblatt 12:22
I love that so much. Thank you for being a champion for women out there.
Catina Morrison 12:26
Thank you.
Steven Newmark 12:27
Catina, you’re creating a workbook about self advocacy. Can you tell us about this project? What sparked it and what people can look forward to learning?
Catina Morrison 12:34
Yes, I was looking for an opportunity to create something that I knew would really help others. Because we can talk about things, but many of us learn in various ways. And me when I see it, and when I read it, and when I do it, it becomes a part of who I am. So I said, “Okay, what can I put out there that I can make accessible to women, it’s free, that can help them to start that journey to finding their voice, learning how to use it and provide them different examples of ways that they can do it in their healthcare?” So I created the book, The Inflamed Sisters Guide To Thriving With Self-advocacy For Health. And in this book, it does exactly that. It was created to help people to find their voice so that they can thrive in all aspects of their health and start them in that journey. I am going to create various books that speak in reference to self-advocacy. But I wanted this to be that first step. And in fact, I’m going to be joining a summit. My speech will focus on self-advocacy. And I wanted to make sure that this book was available at that time so that I could reach as many people as possible and encouraging them and showing them how they can be their own advocate in their health.
Zoe Rothblatt 13:49
I love what you mentioned about people learn in different ways and that you created this book to reach more people. I think that’s so important. What’s your one tip for self-advocacy?
Catina Morrison 13:59
What I recommend for people is to start journaling. Journaling is so important for someone whether you live with chronic illness or not. You’re going to the doctor for a reason. So journal what is going on. What do you want the doctor to address for you? What questions do you want to ask them? When you leave that appointment, what is it that you want to understand? As you do that journaling, it’s so important to document your medications. Document, also, how you’re feeling at the moment. When you go to the doctor, you’ll already have outlined what you want to say, what you want to have addressed. And you won’t leave that appointment without getting those questions answered, because we will go into the doctor’s office and then we’ll leave and it took us a month to get the appointment, or more sometimes, and we did not get all the answers to the questions we had. In fact, we didn’t even ask them because we forgot them. But by journaling you can ensure that you can be that active participant and you can advocate for yourself by having everything outlined for you easily in front of you. So the best thing you can do start journaling, documenting your symptoms, documenting your concerns and questions. And when you get in that appointment, be ready to use your voice.
Zoe Rothblatt 15:14
That’s great. It’s so true what you mentioned.
Steven Newmark 15:16
Absolutely. Where can people follow you, stay in touch, listen to your episodes?
Catina Morrison 15:21
You can find me on Instagram. My Instagram handle is @Iam_CatinaMorrison. You can also find me on my website, it’s nurselovesessentials.com. There it details what services I offer. And also my podcast, blog, and episodes are attached there. You can find my podcast, Inflamed Sisters Thriving, on Anchor, as well as Spotify, and it’s on all the additional outlets.
Steven Newmark 15:46
Great. I’m excited to finish up our episode so I can go listen to Inflamed Sisters Thriving.
Zoe Rothblatt 15:50
Well Catina, thank you so much for joining us today and sharing your story with us and our listeners. It’s been great getting to know you a little bit more. So just thank you.
Steven Newmark 15:59
Thank you.
Catina Morrison 15:59
I appreciate you having me. And thank you for all the work that you all are doing to support this community. I appreciate the opportunity to be here.
Zoe Rothblatt 16:08
Well, that brings us to the close of our show. And at the close of our show, Steven and I share what we learned today. So Steven, what did you learn?
Steven Newmark 16:15
Well, I learned a lot from Catina, very specifically how prevalent gaslighting is particularly amongst female patients. And that’s disappointing to have learned. But I’m glad that there are people like Catina who are out there and helping to teach patients how to advocate for themselves
Zoe Rothblatt 16:30
For sure, me too. And I was just more of a reminder I guess, than a learning, from Catina about how important it is to use your voice and just start talking and asking and telling your needs because at the end of the day, it’s your life and it really does matter.
Steven Newmark 16:46
Well, we hope that you learned something too. We’d love to hear from you about what you’re dealing with in your doctor’s offices. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 16:58
And who knows whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 17:05
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week
Zoe Rothblatt 17:10
Well everyone, thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you liked this episode, give us a rating and write a review on Apple Podcasts, and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 17:27
I’m Steven Newmark. We’ll see you next time.
Narrator 17:32
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 19- The Alphabet of COVID and Why It Matters
A series of letters and numbers have changed our lives: COVID-19, SARS-CoV-2, Omicron, Delta, BA.4, BA.5. So no wonder we’re confused by the virus and all its variants. In this episode, our host Zoe Rothblatt leads our class in sorting through the confusion and, together with Steven Newmark, bottom line why we need to understand it all.
“How do you recognize your symptoms? I did a COVID test because I was so nervous. I’m like, “No; it’s allergies.” And it would really be helpful if I read up more so I could recognize those symptoms and not bring myself into a panic,” says Zoe, Patient Advocate and Community Outreach Manager at the Global Heathy Living Foundation.


S3, Ep 19- The Alphabet of COVID and Why It Matters
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
How do you recognize your symptoms? Right now, I have allergies. I did a COVID test because I was so nervous. I’m like, “No, it’s allergies.” And it would really be helpful if I read up more so I could recognize those symptoms and not bring myself into a panic.
Steven Newmark 00:24
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 00:34
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:39
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:53
We sure do. And you can check them all out at ghlf.org/listen. This week, we’ll give a shout out to Talking Head Pain hosted by Joe Coe. New episodes are out for season two featuring a diverse group of migraine advocates, and it’s just a great listen. So check it out. Let’s start as we always do with a listener comment. Are you ready, Steven?
Steven Newmark 01:14
I am ready.
Zoe Rothblatt 01:15
This one came from Alex G. who wrote, “Great podcast. Quick and easy to follow.”
Steven Newmark 01:20
Quick and easy to follow. And that’s no accident, Alex G. We know that your time is important and we try to condense information in as short a format as possible
Zoe Rothblatt 01:28
And have fun while we do it.
Steven Newmark 01:30
Absolutely. I’m excited for today’s episode because I was ranting about the variant and the subvariants. And how do you know the difference between a subvariant and a variant? What does that mean? Who is this there that some exalted council that sits on high? And I thought we should get an expert on to talk about it. And I realized we can just do some research and figure out what this stuff is all about and present it to our listeners. So hopefully, folks will find that interesting.
Zoe Rothblatt 01:55
For sure. I definitely learned a lot in my research, and I’m excited to talk about it. But first we do have a few news updates. The first one is that we have our COVID-19 Patient Support Program quick poll results. So this was sent out by GHLF to our Patient Support Program. We wanted to learn more about our community’s experience with Evusheld, which is monoclonal antibodies. It’s a medication that you can take to prevent COVID before exposure in immunocompromised individuals. So you know you would take this before you come in contact with somebody as a preventative treatment.
Steven Newmark 02:29
So the idea being that if you are going to be attending an event where you’re putting yourself at risk, not this is not something that should be taken daily, but if you’re going to attend an event, a wedding or a family gathering, this could be helpful for folks who are immunocompromised as a preventative measure.
Zoe Rothblatt 02:44
And because we know that people are immunocompromised may not have garnered as full of a response as you know our quote unquote healthy population. So this is sort of an extra layer of protection for immunocompromised individuals.
Steven Newmark 02:56
So what did we find?
Zoe Rothblatt 02:57
What the poll found was that 64% had heard of this medication, and of those nearly half have had at least one dose.
Steven Newmark 03:06
Wow, that’s pretty high. I’m surprised.
Zoe Rothblatt 03:08
Yeah, me too. If I’m gonna be honest, I really only know about it because we work here at GHLF. I haven’t heard like any friends or family talking about it. So I’m pretty impressed that, you know, 64% have heard of it. So what was interesting is most received it through their specialist doctor. So rheumatologists, oncologist, neurologistsn nephrologist. And you know, for those who had not received it, we asked why. And we found the majority didn’t get it for three reasons. The first was because their doctor just didn’t recommend it for them. Maybe their condition didn’t qualify or whatnot. Two, there’s limited availability. There was a lot of waitlist and low access and different priorities near them. And three, their doctor want to wait for a little bit more information because as we know this is under emergency use authorization and not fully approved so they wanted to wait a little bit longer to see how things play out.
Steven Newmark 04:01
Also this week, we, GHLF, testified on a bill in the Delaware State Senate. The bill would ban copay accumulator adjusters. Basically, the law would make it so that copayments made using a copay assistance program, which many of our patients use, will count towards patient deductibles and out of pocket maximums, thus overall saving costs for our patients. Our testimony was delivered by our colleague Corey Greenblatt, who you’ve heard from before on our show.
Corey Greenblatt 04:29
I advocate for laws like this because we should be doing everything we can to make it easier for patients to access medications that work for them. And copay assistance and this legislation do just that.
Zoe Rothblatt 04:42
As an aside, I recently ran out of my copay assistance and have a copay accumulator adjuster and this is so personal and frustrating right now. And every time I go to order, luckily, the assistance program is really nice and will give extra benefits. But it is so stressful, just even coordinating with all the different players that you have to make phone calls and take time out of your day. And a bill like this would help patients get their medication. It would save so much time and frustration. I’m just like really hoping this gets passed. And of course, we’ll keep everyone updated.
Steven Newmark 05:18
It is frustrating. I remember once trying to work the copay with the copay card and dealing with my specialty pharmacy. And there was a moment that I was sitting in my doctor’s office with my doctor, his office manager, myself, I have a background in health policy, right, and my wife who is a social worker. All four of us were on separate cell phones, calling for 20-30 minutes to resolve an issue. Unbelievable. Four people who are clearly experts in this thing.
Zoe Rothblatt 05:48
It’s really not easy. Especially when you don’t feel well, it’s so difficult to pick up the phone and do all this. You have such limited energy anyways. Speaking about not feeling well and getting medications, the FDA approved Rinvoq for people with ankylosing spondylitis, which is always really exciting to get another medication approved and options for treatment for people.
Steven Newmark 06:11
Also, we have a few new mask mandates as the Omicron sub-sub-sub-sub-subvariant, whatever it is called, is coming back. The Bay Area, a few cities and agencies in the Bay area of California, are reinstating mask mandates. Some local school districts in Massachusetts are recommending that students wear masks indoors following CDC’s classification of Middlesex County. Massachusetts is having a high COVID transmission. Let’s get into this because I will admit to our listeners, I tasked you with doing the homework, so I’m excited to learn.
Zoe Rothblatt 06:43
Okay, so there’s a lot of terms running around. And as I did some research, I came across even more than I realized. And maybe we’ve been saying them without knowing. So there’s mutation, strain, variant, and subvariant. And then I was thinking, you know, we did say a new strain of COVID, and then switched it to variants. So what happened? Like I don’t know when that switch was, so let’s take it from the start. When you have a virus of SARS-CoV-2, the genetic material is RNA. And in order to replicate, that RNA hijacks the host cell and it uses that cell to duplicate itself.
Steven Newmark 07:21
I remember that from eighth grade bio.
Zoe Rothblatt 07:23
We’re going back to our bio roots. So errors often occur in this process of duplicating the RNA. This means that when it does duplicate, the virus is similar but not exact copies of the original virus. And these errors are what’s called mutations. So then the viruses with these new mutations are called variants.
Steven Newmark 07:43
Got it.
Zoe Rothblatt 07:43
And variants can differ by the original virus by a single or many mutations, it doesn’t really matter. Once it’s changed it’s known as a variant.
Steven Newmark 07:52
So a mutation and variant, while not exactly the same thing, are very related. Basically, the errors, what you’re saying, are called mutations. And then the new virus is called a variant-
Zoe Rothblatt 08:04
Yep.
Steven Newmark 08:04
-that is created. Got it.
Zoe Rothblatt 08:05
So a strain is a variant that’s built a little bit differently. And I think it’s like a super variant, because there’s so many mutations that alter the building block, the main structure, of it, so it behaves really differently to the parent virus.
Steven Newmark 08:21
Right. So you’re saying all strains are variants, but not all variants are strains?
Zoe Rothblatt 08:25
That’s right. You could think about it like it just a variant has a few or many mutations, but the strain really has changed the original structure of the virus. So then what is the subvariant. Subvariant means that it’s not distinct enough to be classified as an entirely new variant, and it shares many of the same genetic similarities with the original variant.
Steven Newmark 08:50
Hold on, let’s take a pause there. So the original strain, we’ll call that SARS-CoV-2, did that have a name or was that just the Wuhan strain?
Zoe Rothblatt 08:56
I think that was just COVID-19.
Steven Newmark 08:59
Essentially, they get names when they’re considered an actual variant. And then a subvariant, you’re saying, it’s a variant that is not distinct enough to be classed as an entirely new variant?
Zoe Rothblatt 09:09
Yes, here’s where it gets interesting. A subvariant can eventually become a variant. So BA.2 is a subvariant of Omicron, because it descended from this original variant, and it shares many of the same mutations as Omicron. So it has that common lineage. But it also has some genetic changes not seen in the initial version, which makes it different. But if it continues to spread and infect people in high numbers, it could acquire its own variant name, because at that point, it’s changed so much from Omicron.
Steven Newmark 09:42
So you’ll take Omicron, Omicron was the variant, BA.1 was a subvariant, BA.2 was another subvariant. Then there are sub-subvariants like BA.2.12, is a sub variant of BA.2?
Zoe Rothblatt 09:56
Yeah.
Steven Newmark 09:56
But one of these subvariants could sort of, for lack of a better term, break out and actually become, what comes after Omicron, P?
Zoe Rothblatt 10:03
Yeah.
Steven Newmark 10:04
As the next actual variant.
Zoe Rothblatt 10:06
Steven, I think you’ve got it.
Pickering (My Fair Lady) 10:08
Tonight, old man, did it. You did it, you did it. You said that you will do it. And indeed you did.
Steven Newmark 10:14
Thanks to you.
Pickering (My Fair Lady) 10:15
Oh, it was nothing, really nothing.
Zoe Rothblatt 10:17
It is so confusing.
Steven Newmark 10:19
I know, that’s why I made you do it.
Zoe Rothblatt 10:22
I couldn’t find this information in the context of another virus, which is really what I was looking for, to help shine light on this. So this was a really COVID focused research, very surface level. I’m sure there’s many experts out there that are saying we’ve glazed over so much. But from the gist of it, we had COVID, we got a variant, the building blocks have changed. Subvariant, it’s similar to that variant, but it also has the potential to become its own thing as it moves through the population. And by its own thing, I mean, a variant with a name.
Steven Newmark 10:54
Excellent. And as I understand it, if you do get infected with a particular variant, you are less likely to be reinfected with that variant in the future. You have greater protection against that variant than a subvariant, and you certainly have less protection against another variant. As I understand it.
Zoe Rothblatt 11:13
I understand it that way, too. And you actually brought me to my next question, like, why does it really matter? And is it a waste of efforts to keep looking at and naming these things? But of course, you just mentioned one of them. It does matter for reinfection. Who has protections? Who’s getting reinfected? How’s it moving through the population? If this one comes and people get it, is it endemic now? It does matter for how we’re looking at the virus.
Steven Newmark 11:39
Absolutely. I think it matters how quickly it moves. These Omicron variants, each one seems to move faster than the one before it through the population. So that’s important to know. If you want to develop a vaccine, you may want to specifically target a vaccine to a variant or a subvariant. It will take a lot of time to do that. But you have to start questioning how rampid it is. And if it starts to outlast all other variants to such a degree that it might be worthwhile to pursue a vaccine specific to a subvariant
Zoe Rothblatt 12:07
And why is this important for immunocompromised? I think it matters for how concerned we should be. Knowing if it causes severe illness. The newer ones have caused mild symptoms and I think it’s helpful to know what’s in your area and what’s causing what symptoms. Is it more virulent? How transmissible is it? How do you recognize your symptoms? Right now I have allergies. I did a COVID test because I was so nervous. I felt a sigh of relief that I saw a negative. I have them around, so I just did it. I’m like, no, it’s allergies. And it would really be helpful if I read up more, so I could recognize those symptoms and not bring myself into a panic.
Steven Newmark 12:43
And I would also add, I think it’s somewhat relevant if you’ve been infected to know that what you have likely been infected with is either still on the population, or it’s been replaced by a new variant. In which case, you probably have to take more precautions again.
Zoe Rothblatt 12:58
Sometimes it’s just nice to put a name to what you have.
Steven Newmark 13:00
True.
Zoe Rothblatt 13:01
When you get diagnosed. There’s like a really good feeling that’s part of this dread. That’s like, you know, I finally have a name. And I know COVID-19 as a name, but maybe getting more specific is actually kind of comforting to some people.
Steven Newmark 13:13
I can see that for sure. Not with COVID, but so many times I’ve gotten ill with something and I’ve gone to a doctor, and I just want to know what it had. Was it, is it a flu? Is it pneumonia? I just want to know. And once you get the diagnosis, I’m like, okay, at least I know it’s something that’s in the world. It’s not a new disease, because that would have been the scariest part, getting it early on.
Zoe Rothblatt 13:31
And a little more news in my research, there’s even more terms for variants. The CDC and World Health Organization have classified variants into different categories. So there’s variant of interest, variant of concern, and variant of high consequence.
Steven Newmark 13:48
These I actually know. A variant of interest is a variant that, compared with earlier forms of the virus, has genetic characteristics that predict greater transmissibility. And so there’s a belief when it’s called the variant interest that it’s going to be more transmissible. A variant of concern has actually been observed to be more infectious and is likely to cause breakthrough infections or reinfections for folks who have been vaccinated or previously infected. And then a variant of high consequence, I believe that that is a variant for which vaccines do not offer protection. But as of now, knock on wood, there have been no SARS-CoV-2 variants of high consequence.
Zoe Rothblatt 14:22
Yeah, thank God we have not heard that term flying around. I don’t think any of us can handle that emotionally. And then the big question at the end of it is, will there be more variants?
Steven Newmark 14:32
I know the answer to that one, too.
Zoe Rothblatt 14:34
Okay.
Steven Newmark 14:34
Yes, there will. Yes, there will. Yes, there will because nature is such that the winning variants are going to continue to be the ones that are able to evade, I’m gonna say, evade capture, and keep going. So they’re going to drown out the one that comes before it and the one that comes before that and so on and so forth. So as long as Coronavirus continues to spread, mutations will continue to happen. And the winners are going to be the variants that are most effective.
Zoe Rothblatt 14:58
What’s hopeful, though, is that each talked about this in an episode a few back, the virus wants to live on and it’s in its benefit not to kill the host. And that’s why they become less intense.
Steven Newmark 15:09
They become weaker. Very good point, let’s put a pin in this here and on a positive note. Number one, there will be more variants, but they are more likely to be less virulent. Number one. Number two, could even get better versions of vaccines that come out. And number three, as we continue to develop various therapeutics to combat it, once we get sick, we should be in an even better state as the months and years go on.
Zoe Rothblatt 15:30
That’s really comforting. Steven, I wanted to try something new this week with a listener question. We had a few similar questions come in and they went something like this. “I’ve had one or two doses of Evusheld and what now? Can I eat outside or inside without a mask? Can I visit my grandchildren? Can I go to concerts? There’s really no clear evidence, please advise.” So I thought maybe we can walk through this question, talk about how we would answer it. Of course, use our tagline we are not experts, but we do have some thoughts here.
Steven Newmark 16:04
We can never give specific medical advice, of course. But in terms of this question, look, it’s challenging navigating the changing guidelines, it is very challenging. And unfortunately, there is not a clear cut answer on how safe or risky various scenarios are.
Zoe Rothblatt 16:17
I 100% agree. It’s good to be asking the questions and looking at the scenario. Of course, number one, I always talk to my doctor. And when people ask questions like this, I always say you know, talk to your doctor first. They know you, your personal health history, your location, you know your day to day life, and they can give you informed medical advice. But otherwise, personally, when I think about a situation, I’m going to I ask myself a few questions. What safety precautions are in place at the event? Will there be distancing? Is it indoors, outdoors? I take a scan of the scenario, then I take a scan of the people. Do I know the people? Is that a close group of friends that I know their vaccine status? Do I know that they’ve been sort of just hanging out with the same group or at a large gathering? Maybe if they’ve been a large gathering, I don’t want to go near them. And then I think about, personally, what safety precautions do I have? I have my vaccines, I have my booster, I have my N95 mask. And I think about, you know, what can I bring to the table in that scenario. And then given all those, I decide if it’s something that I feel comfortable with.
Steven Newmark 17:22
I would say I’m the same way. I tell people to wear the N95 masks and try to avoid certain indoor situations. And yet I fully admit that I violate that myself at times. So I am not consistent. And you can call me out. And that’s the way it is. I would say I’ve sort of gotten to the point where I also believe that there is a health benefit to participating in certain activities that may be risky, a mental health benefit, if you will. I ride public transit, I fly on airplanes, occasionally, I do know somebody who flies on airplanes extensively, and wears the N95, from the moment they get into a taxi to the airport until the moment they land, doesn’t take it down to breathe for even a moment. I have not taken a long flight, but I’m planning on some. I can’t imagine not pulling it down for just a second to take a breath here and there.
Zoe Rothblatt 18:08
Yeah, and you know, staying hydrated is also really important on a plane. You can’t compromise so much of your health that you’re going to be in a bad way after it’s just how I looked at it.
Steven Newmark 18:17
Right. And I mentioned this on our last podcast, I’ve heard that the times to be most cautious are when boarding and deboarding an airplane because that’s when they turn the HEPA filters off. That’s when you’re really crunched in tight to your neighbors. So that is a time period in which I definitively keep the mask on very tight. I’m definitely less scared about going into supermarkets and things of that nature. I go to markets that are very large. I know that I’m in and out in less than 10 minutes at most supermarkets now. Maybe 15 minutes on a really bad day. So I feel less scared. I am wearing a mask of course, but I don’t feel nervous. The weather is better. So it’s easy to eat outdoors. If you’re going out for meals. That’s a saving grace too.
Zoe Rothblatt 18:57
I’ve been eating outdoors a lot. And it’s so nice to, you know, just get pampered. That mental break makes me forget about COVID for a little bit, which is really, really helpful.
Steven Newmark 19:08
But there are other things I still haven’t done. I still haven’t gone to a movie.
Zoe Rothblatt 19:11
Me neither, actually.
Steven Newmark 19:13
I did get tickets, God, I’m very New York right now, I got tickets to a Broadway show, which I haven’t seen in over two years.
Zoe Rothblatt 19:18
I think it’s just about how you’re prioritising your needs and your safety and determining what’s right for you. I’d say that the people asking these questions, you’re not alone. I find myself asking these questions a couple of times a week when things come up. And I really evaluate each scenario by itself and think about how I’m feeling, you know, what’s going to be most beneficial to me. And if I get to a place where I don’t feel comfortable, I leave. I’m not like chained to the place. You can always reevaluate as you go. And it’s hard that there’s no clear cut answers.
Steven Newmark 19:47
Well, I learned a lot today.
Zoe Rothblatt 19:49
I know me too. You share first.
Steven Newmark 19:51
I appreciate the work that you did in explaining the differences between variants, subvariants, mutations, and strains. And I did learn from that. So thank you very much.
Zoe Rothblatt 20:00
I learned from that too. And just doing the research and talking it out with you. It’s helpful. I guess my learning is that it’s helpful to really talk it out and be able to say it more than just read it.
Steven Newmark 20:12
Well, we hope that you learned something too. We’d love to hear from you about how you’re dealing with this phase of the pandemic. Send your email to [email protected] Or better yet, include a short video or audio clip.
Zoe Rothblatt 20:23
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 20:30
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 20:35
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 20:53
I’m Steven Newmark. We’ll see you next time.
Narrator 20:58
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 18- This Nerve-Wracking Time of COVID
Who doesn’t want to leave winter behind and enjoy life beyond COVID? But the truth is we’re living in a place in-between, eager to drop our guards and live life out in the open again but with the invisible threat of variants always looming nearby.
“I saw New York City has moved into the medium yellow risk category as (COVID) cases rise,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Heathy Living Foundation. “That sent off the little alarm bells in my head…it’s a little nerve wracking to be moving into this category.”


S3, Ep 18- This Nerve-Wracking Time of COVID
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
I saw New York City has moved into the medium yellow risk category as cases rise. That sort of sent off the little alarm bells in my head because we also know that people are testing at home. So cases are probably higher than we think. You may walk outside and everyone’s acting normal. It’s a little nerve wracking to be moving into this category.
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 00:40
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:44
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. But before we get started, we want to be sure that everyone takes listen to all of our great podcasts. We have so many to choose from.
Zoe Rothblatt 00:58
This week, we’ll give a shout out to our newest podcast called Wellness Evolution. It’s hosted by our colleagues, Danielle Ali and Angel Tapia. And it’s just this wonderful podcast bringing you diverse conversations about mental health, the wellness journey, and there’s also these great breathing exercises.
Steven Newmark 01:16
Yeah, it’s great to help you get through difficult times that we’re all feeling these days.
Zoe Rothblatt 01:20
Yes, and you can check them all out at ghlf.org/listen. Let’s start as we always do with a listener comment. Are you ready?
Steven Newmark 01:28
I am ready.
Zoe Rothblatt 01:30
This one is from Tamari95, who wrote, “The host provides so much relevant information. Thank you.”
Steven Newmark 01:36
We’re glad to hear that you’re finding it useful. And we’ll continue to do what we do. Thank you, Tamari.
Zoe Rothblatt 01:43
For this week, in this episode, I have a feeling we’re going to go on another rant. We’re in this uncertain period in between winter and you know, being bottled up in our houses and trying to let go of that as the nice spring air comes in. The city’s coming back to life where we are. And you know, I’m feeling hopeful. But we’re also in this weird in between period where cases are rising and how do we reconcile all that. But first, let’s take a look at the news of the week. The biggest news on my mind this week is that it’s Arthritis Awareness Month.
Steven Newmark 02:11
So that’s a clue in to say that it is May, and during the month of May last year, we had a campaign called We’re Still Invisible. Especially because of COVID, it feels like we’re kind of having the same conversation.
Zoe Rothblatt 02:24
People are going out about life and feeling comfortable with the virus. And I feel like we keep crying out that our life matters. Arthritis is sometimes visible, I’ll say that. But a lot of times a lot of the things we feel are invisible. And I think we’ve become more invisible during COVID. And it’s just hard to say that a year later, you know, another year passes and we’re still fighting and having the same crying out.
Steven Newmark 02:47
Absolutely. On a personal note, I find it is always helpful to advocate. I think it helps mentally, it makes you feel like you’re doing something, and it’s better than sitting around and brooding and being depressed. And we have a few ways that you could help advocate for yourself and for others this month. Number one, you could share your experience with those around you on social media. Number two, you can join our 50 State Network to take action to improve health policy. And number three, you can contact your elected officials and share your story. And number four, you can participate in research through GHLF’s Arthritis Power.
Zoe Rothblatt 03:20
You mentioned our 50 State Network, you know, if people want to join and don’t know where to get started, definitely reach out to us at [email protected] and we can help you get started.
Steven Newmark 03:30
And this is the month to do it.
Zoe Rothblatt 03:31
Yeah, this is. What else is in the news this week? I saw a lot of vaccine updates. It’s really focused on children. And I’m interested to hear your perspective as a parent. So Pfizer recently asked FDA to authorize a third dose of its COVID vaccine for children ages 5 to 11. So this is about a booster and the booster is already authorized for teenagers 12 to 15. That happened in January. So now they’re looking at this younger age group. Then two other updates; Pfizer and Moderna are both filing with the FDA to get Emergency Use Authorization for vaccines in children. Pfizer hopes that they could do 3 extra small doses in children under 5 and Moderna is hope that they can provide a 2 low dose shot to protect children under 6. Okay, that was a mouthful. What are you thinking hearing all this?
Steven Newmark 04:20
I relate to that with the masks. I’m like I don’t really care what kind of mask people are wearing as long as there’s something there It’s great news. In terms of the children 5 to 11, there may be an authorization for boosters. And in terms of the children under 6, we may get our first authorization for actual vaccines. So let’s take it one at a time. I guess we’ll start with the youngers because that’s probably the bigger news and frankly, the more important because they are still the only age class that is ineligible for vaccines. There are a lot of anxious parents out there who want their kids to have the vaccine. I know parents, frankly, who don’t even care what the efficacy level is. It’s almost like I don’t care how effective it is. If it’s barely effective, I just want something. Right. And I think that there’s that feeling out there for a lot of parents. I was just saying last night to my wife, the one saving grace from this whole pandemic, if there is a saving grace from COVID, is that mercifully, it has not attacked children the way it has attacked the adult population. I’m grateful that vaccines are coming. But I also don’t have a child under the age of 6, so my anxiety level is probably not the same as theirs. So being a step removed from it, I’m a little all over the place right now. But I’m happy it’s coming. But I was not freaked out about it the way some parents were and seeing those parents, I’m happy for them. I’m happy for society that finally we can get the vaccines. The one thing that does give me pause, I don’t want to pause, I want this authorization to happen. But I am not nervous about the number of children who will be taking it. We see the numbers for the ages 5 to 11, it’s lower than I think it should be. So I’m even more nervous for the children under age 6. So we’ll see what happens.
Zoe Rothblatt 05:54
I’m not in parents circles, so it’s interesting to hear the conversations that you’re a part of and you’re hearing. I guess, from my personal experience, being someone with underlying conditions, who’s immunocompromised, my heart goes out to the children who are living with conditions, you know, it’s Arthritis Awareness Month, I think a really big misconception is that young people don’t get arthritis, young people don’t get chronic diseases. And there are many children out there that are scared, their parents are worried for them. I hope this brings some light. And you know, like we mentioned on a recent episode, there are treatments available to children if they do get COVID. So you know, this is just like another step in the right direction.
Steven Newmark 06:31
And I guess if my excitement is tempered, it’s probably because I was excited in February for the kids. And then when it didn’t happen, it was sort of a gut punch. It’s like, oh, gosh, what is going on? In baseball, I’m a Mets fan. So I’m never able to actually celebrate ever until maybe after the last out of a World Series, which I likely will never see. I can’t feel comfortable until what happens.
Zoe Rothblatt 07:04
Summers coming up, we have a lot of long weekends and camp. So I hope that we can get these approved so, you know, kids can enjoy their summer.
Steven Newmark 07:12
Yeah. And getting back to the, I guess we’ll call them the older kids, the 5 to 11 boosters, that I’m very excited for, if for nothing else, and I’m speaking not as an expert, but as somebody who reads excessively on this, I worry, not just for the current Omicron because I’m hopeful that by the time the authorization comes out, I’m hopeful that the BA.2 may be tamped down, we may be in the summer where where there’s more outdoor activities and less indoor activities and less, some less transmission. But I have this anxiety that in the fall, there’s going to become another variant. And as children reenter school, as those of us who have been outdoors or had been outdoors over the summer start to come back inside, this spread is going to become higher, and I worry about the waning efficacy of the vaccines for children. So a third dose coming in the fall, I think would be great to reboost the antibodies.
Zoe Rothblatt 07:59
And on the topic of a booster conversation, I know immunocompromised people, I’ve got a fourth shot, I believe people over 50 are eligible for fourth shot and I’m wondering about the waning immunity. I wonder when we’re going to see a fourth shot for the general population and what the data is going to look like as we get these more variants. You know, we’re now in BA.2.1- I don’t even know what they’re called anymore.
Steven Newmark 08:25
BA.2.2115.
Zoe Rothblatt 08:26
This morning, I opened my news, I saw BA.4 and 5.
Steven Newmark 08:29
Yeah,.
Zoe Rothblatt 08:29
I didn’t know those existed yet. And it seems like the variants are just rapidly coming.
Steven Newmark 08:34
My one area of hope, again, not as an expert, at least the variants are sub lineages of the same Omicron variant. So hopefully, those who have been infected have some level of protection, they say reinfections, even with the new variants is quite low. So that’s one good sign. I’m more worried if we get an actual new variant, not one of these BA sub Omircron variants. But you know, another Delta type variant. Not to mention, if we get something that actually is more damaging, that would be a horrific.
Zoe Rothblatt 09:01
That’s a good distinction.
Steven Newmark 09:03
In terms of the fourth dose, we’ve said for quite a while I’m expecting this to be an annual thing, every fall similar to a flu vaccine gotta get your antibodies up. I think it seems as though they’re testing and there are worries that the fourth vaccine, it was a study out of Israel that showed that the fourth vaccine, the antibodies, unfortunately did not last, They wane very quickly. So I think we’ll have to continue to see what the studies show in regards to a fourth vaccine for the general population. I know I was talking to my parents, and they were talking about getting the fourth shot in discussing it with them. We came to the decision to plan your fourth shot around a specific event. My parents would barely leave the house. But let’s say they have an event to go to on July 1. I said let’s try to plan back from that so your protection is at its peak when you’re doing your event.
Zoe Rothblatt 09:48
That’s great advice to think about planning and your protection.
Steven Newmark 09:52
But unfortunate because then you can’t do an event in August.
Zoe Rothblatt 09:54
Yeah, talk to your doctor of course about what’s best but people with chronic illness are always planning and calculating, you know, if I take a shower now will I have the energy to go do this. And it’s funny just to have that conversation in all things related to health. I was also reading that experts are moving away from this term fully vaccinated and using up to date, which means getting a booster when eligible. Because what is fully vaccinated? There’s different shots available to different people and up to date is just a more current language to use. And I kind of liked that.
Steven Newmark 10:32
Oh, yeah. Is that the language we use for other vaccinations?
Zoe Rothblatt 10:35
I think so. I feel like I go to my primary care and they say, “Are you up to date? Let’s see if you’re up to date on all your vaccines.”
Steven Newmark 10:41
Right. They don’t say, “Are you fully vaccinated?” It actually doesn’t make sense if you think about it.
Zoe Rothblatt 10:45
Yeah, for the puppy too. “Is he up to date on all the shots?”
Steven Newmark 10:48
Right, right, right. “Are you up to date?”
Zoe Rothblatt 10:50
I guess this is a good opportunity to say that we talk a lot about the COVID vaccine. But vaccines in general are just so important. And I didn’t even realize that I was due for some boosters of vaccines I got as a child. And that was pretty illuminating in my recent appointment. And like I just realized how much there is to keep track of and advocate and keep your records in a good spot that you can show your doctor and have these conversations about what you need to do.
Steven Newmark 11:15
Yeah, one thing I would also advocate for, I think I could say I’m an expert in this area, at least if nothing else, is it’s always good to have your records in one place. I’ve always been very vigilant about getting all of my records to my primary care doctor. No matter how many specialists I go visit, I always ask them to send it to my primary care doctor, in case of emergency, in case of whatever. I want my records to be in one place. They’re electronic. So if I’m ever traveling, and I need to access my records, they’re in one place. So it’s something I would always advocate for. And when it came to the vaccines I made sure to do that as well. I am definitely surprised at how quickly the world has moved away from the vaccinations requirement. I say that I am planning to go to a big arthritis conference in Europe at the end of the month. And I was surprised I don’t need to show any proof of vaccinations to get into Europe. Nor do I need to show any proof of vaccinations to return to the United States. I do have to show proof of a negative test within one day of travel to get into the United States. But the vaccines, I have laminated all my cards, I’ve got photocopies, I’ve got everything on my phone. But it seems as though the proof of vaccinations is not a thing anymore. That didn’t last.
Zoe Rothblatt 12:19
So speaking of travel, I saw that the CDC still staying firm and encouraging masks on travel regardless of what the federal judge ruled, which I thought was interesting that now a little time has passed, but the CDC is still coming out and saying.
Steven Newmark 12:33
Maybe they listened to The Health Advocates, because we’ve been saying that too. It’s your personal decision. But my personal decision is to keep wearing my N95 mask when I’m anywhere indoors with other folks that I don’t know. And definitely on a plane.
Zoe Rothblatt 12:46
Yeah.
Steven Newmark 12:47
I’ll give you another public service announcement that I found. It is difficult to wear a mask, I understand, for a very long flight. Including the airport time, time in a taxi, and all that stuff waiting to get on. I did hear that the absolute most important time to wear the mask is when boarding and when de-boarding a plane. Because when you’re in the air, not that it’s particularly safe, per se, but they are running the HEPA filters when you’re in the air. But when you’re boarding you’re you’re scrunched together, you’re tight together and the filters are not running. So that is really the time that you definitively want to be in a mask. If you ever have the sense that I want to just pull down the mouse for a second, take a breath. That’s not the time to do it. So just a little word of advice that I heard.
Zoe Rothblatt 13:27
Yeah, the more you know, that’s a really great tip. Thanks for sharing that. The last thing on my mind is that I saw in New York City, which is where we are, has moved into the medium yellow risk category as cases rise. And that sort of sent off like a little alarm bells in my head because we also know that people are testing at home. So cases are probably higher than we think. You may walk outside and everyone’s acting normal. It’s a little nerve wracking to be moving into this category.
Steven Newmark 13:53
Yeah, not to mention you move into a category that doesn’t do anything, right. I mean, the mayor said, “Yeah, we’re in the category.” What does it mean? J”ust means we’re in a new category.”
Zoe Rothblatt 14:01
Yeah, they’re raising this risk category. But there’s no direction for how we should behave as a result. The public health response feels a bit lacking to me.
Steven Newmark 14:09
I totally agree.
Zoe Rothblatt 14:10
We know what to do for ourselves. But it would be nice if, as a community, we were all doing it together. Because with this virus, you do have to be in it together. It’s not just about individual behaviors.
Steven Newmark 14:20
Hopefully cases will start to go down.
Zoe Rothblatt 14:22
Another week, another rant from us.
Steven Newmark 14:24
Yeah,
Zoe Rothblatt 14:25
Steven, that brings us to the close of our show.
Steven Newmark 14:27
Let’s be positive, let’s be positive.
Zoe Rothblatt 14:29
Let’s be positive. What did you learn about today?
Steven Newmark 14:32
I learned the general use of the phrase with vaccinations should probably not be fully vaccinated, but rather, “Are you up to date?” And I think that is a better way of asking it. Are you up to date.
Zoe Rothblatt 14:43
Agreed, and I learned from you about the conversation that parents are having about children and the vaccines and the hope that there is.
Steven Newmark 14:50
Well, we’ll have you on something too. We’d love to hear from you about your advocacy stories. Send your email to [email protected] Better yet include a short video or audio clip.
Zoe Rothblatt 15:02
And who knows, whatever you share may be included in our listener feedback portion of future episodes.
Steven Newmark 15:09
Also email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 15:14
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and definitely hit that subscribe button wherever you listen. It’ll help more people like you find us. I’m Zoe Rothblatt.
Steven Newmark 15:33
I’m Steven Newmark. We’ll see you next time.
Narrator 15:38
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
S3, Ep 17- “We Grieve Who We Once Were”
The majority of Americans are now believed to have had COVID. So as communities lower their guard, the strategy to fight the virus is as much rooted in vaccines and masking as it is with new drugs that are being approved. But for our immunocompromised community, the fear of contracting COVID keeps them isolated while they long for that time when they were once free from chronic illness.
“We’re all just one chronic disease away from being chronically ill,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Heathy Living Foundation. “I was once young and healthy before I got the diagnosis. We grieve who we once were and what we used to be able to do.”


S3, Ep 17- "We Grieve Who We Once Were"
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Zoe Rothblatt 00:08
We’re all just one chronic disease away from being chronically ill. You know, I was once young and healthy before I got the diagnosis. We grieve who we once were and what we used to be able to do. It’s an interesting concept to think of yourself in a certain way. And then one day you get a diagnosis and it’s not that
Steven Newmark 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 Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Zoe Rothblatt 00:38
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF.
Steven Newmark 00:42
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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:57
And you can check them all out at ghlf.org/listen. Big shout out this week to Healthcare Matters. Our colleagues, Conner and Robert recently did a two episode special on non-medical switching on their show and the impact it has on patients.
Steven Newmark 01:11
And it’s a great listen for those who want a deeper dive on policy topics.
Zoe Rothblatt 01:15
Okay, Steven, let’s start as we always do, with a listener comment. Are you ready to hear it?
Steven Newmark 01:20
I am ready.
Zoe Rothblatt 01:21
I really smiled when I saw this one. Christina wrote, “This is my other can’t miss health podcast. If you have chronic illness or illnesses in your household, you might find this encouraging and helpful.”
Steven Newmark 01:32
Wow. Well, I got to know what the other other can’t miss healthcare podcast is. Please let us know what the other one is because I’ll started listening. And thank you for your comment.
Zoe Rothblatt 01:41
In healthcare news, the White House announced plans to expand availability of the COVID drug Paxlovid.
Steven Newmark 01:48
Yes, this is the new push from the White House to get Paxlovid, a drug which reduces COVID hospitalizations by 90%, into the hands of more Americans.
Zoe Rothblatt 01:56
And this is especially important because for our community, who is at high risk for, you know, severe case of COVID and complications, getting access to drugs like this is important to stop the infection early on. This drug is authorized for use in patients 12 years of age and older who test positive and are at high risk. This expansion is really targeted towards our community, which is nice because we’ve been talking about feeling left behind. So this is really encouraging.
Steven Newmark 02:24
It’s definitely important for keeping folks out of the hospital, as you said. It reminds me, I am not a medical expert so this is not a medical comparison, but it reminds me a little bit of Tamiflu. It’s a drug that if you take it within the first five days of testing positive or actually being infected with COVID, it will help tamp down the symptoms essentially, and thus make things better to bear if you will, during the course of your illness.
Zoe Rothblatt 02:47
I feel really grateful that they’re going to expand this availability. I know the rollout has been really slow and pharmacies haven’t really had stock of the drug. And physicians have been hesitant to prescribe it because they know there isn’t a large supply. So it feels really good to know that we’ll have an extra tool in our kit as a defense against COVID.
Steven Newmark 03:05
They’re pushing an arsenal as well where you can actually get tested at a pharmacy and you’ll be able to get a supply of Paxlovid on the spot. So you won’t have to take the two step process of going to a doctor to get the prescription, have it called in, and then picking it up. So that already exists. But it’s just not as widespread as probably it should be.
Zoe Rothblatt 03:24
That’s a really great program. All of our spoony listeners know how frustrating it is to go through the process of getting medication and how important early treatment is. So to have it in one stop shop, we know how valuable that is. Absolutely. And hopefully the supply will increase as well. Because one issue is, as you mentioned, doctors are reluctant, you know. They have to go through a whole checklist to see whether you’re eligible. And hopefully it will become more akin, if you will, to Tamiflu. They don’t even have to check to see whether who is eligible. If you’ve tested positive, get yourself on it within the first five days, and with the illness not quite as bad as it might otherwise have been. In other treatment news, I saw that the Food and Drug Administration, the FDA, granted full approval for the COVID treatment called remdesivir for young kids.
Steven Newmark 04:13
Yeah, this is great, too, because this is a first treatment that’s available for children. And that includes children under five, who are as we all know, are ineligible for vaccines at the moment. So this is another tool that will help our youngest.
Zoe Rothblatt 04:26
I saw that it’s approved for children over 28 days of age, which is really remarkable to think that for new parents who are really really worried and concerned about their kids who don’t have protection that we now have this.
Steven Newmark 04:39
Absolutely. Look, we’re starting to talk about the idea that COVID is out there, it has infected a lot of people, the chances of avoiding COVID fully are just diminishing by the day. The new strains are getting more and more contagious. So, you know, the idea of fully avoiding it, as I’ve said before, unless you want to be a hermit in a cabin somewhere, it’s going to get more and more difficult to avoid it. So we need to rely on things on the back end to help keep us safe, should something happen.
Zoe Rothblatt 05:06
I’m hearing again of people left and right testing positive. It’s getting to that point again, where I’m getting really nervous again. Nobody in my building is wearing masks. I find myself in the elevator, you know, it’s a cramped space. And it’s tough when you’re looking at people, and they’re not in a mask. Cases are going up and it’s hard. But I’m glad that in our news recap, we’re talking about these treatments and advances that are happening.
Steven Newmark 05:31
Yeah, absolutely. We have, if I dare say, as a non expert, crossed the threshold, we may have crossed it a long time ago, when the idea of eradicating COVID is just not in our sights.
Zoe Rothblatt 05:43
I know what a dream we had. Let’s go back to those good days.
Steven Newmark 05:47
Yeah, it was this thought flatten the curve. Remember the olden days?
Zoe Rothblatt 05:50
Yeah, two weeks, we’ll be back in two weeks.
Steven Newmark 05:53
But even even beyond that, when the vaccines first came out, when we started masking, there was definitely a thought that we would get herd immunity with a combination of vaccines and folks who have already been sick. The CDC, just this week, also announced that they believe that 60% of Americans have been infected. And even more jarring, 75% of children have been infected with COVID, which is incredible. And I got to think off the top of my head, that they’re undercounting some of the folks who were asymptomatic. Oh, and that was before the BA variants, the various BA variants. This is from February of 2022. And as you said, we’re starting to hear about folks who are getting infected who had not previously tested positive. So you’ve got to figure that the real number is closer to let’s say 66%. So that’s two out of every three Americans have been infected at some point with, at least once, with COVID, which is pretty wild.
Zoe Rothblatt 06:48
Also, a lot of people are testing at home on rapid tests, which isn’t documented. So all those cases are unaccounted for.
Steven Newmark 06:54
Exactly. Thankfully, thankfully, thankfully, because of treatments that are being developed and are out there now, the hospitalization rates are stable, they’re actually going down. We’re certainly in the phase where we’re going to have to start to say herd immunity, that is not going to happen, or it’s going to be very difficult to get. So we have to start to think how are we going to deal with this. You know, I think for those of us who are immunocompromised, a lot of it is seeing the numbers, as unreliable as they may be, we have to see when the numbers are high, when the numbers are low, how we react. Maybe we could afford to be a little less cautious when the numbers are extremely low. And we know to take extra caution when the numbers start to increase.
Zoe Rothblatt 07:31
Let’s back it up. You mentioned herd immunity. Also people may know it as community immunity. This is when a large portion of the population and area is immune to a specific disease, mostly attributed to vaccination rates. And the idea is that when people are protected, it helps protect the vulnerable who can’t get a vaccine. We know some in our community are unable to get the vaccine, you know, because of various, you know, allergic reactions or whatnot. We talked about children, herd immunity is important for children who can’t get vaccinated. So you’re saying and you know, what I’m thinking and experts are thing is that we can’t get to this point with COVID.
Steven Newmark 08:06
There was a point where several countries at the beginning believed that the best path through the crisis was to slow that controlled spread of infections through the population, particularly the young and the healthy, to achieve herd immunity to best protect the more vulnerable populations
Zoe Rothblatt 08:20
That’s true. That’s a good point. I was talking to my own doctor about COVID. He said, “You know, don’t don’t forget, you’re young.” Like, am I? The definition of young is really starting to be stretched a little bit if I’m in that category. But I think generally the idea at the beginning voice was to let it spread, at least in certain countries. And let’s just say it didn’t work. We’re all just one chronic disease away from being chronically ill, you know, I was once young and healthy before I got the diagnosis. I think probably all our community, we grieve who we once were, and what we used to be able to do. And it’s an interesting concept to think of yourself in a certain way. And then one day you get a diagnosis and it’s not that I guess maybe it’s helpful to think of an example of where we did achieve herd immunity and how that happened. I think a really common one is the measles. Measles spreads through the air. It’s really contagious. And for the most part, the US has eliminated transmission and kept measles from circulating. And we attribute this to three things. One, we have an effective vaccine. Two, the measles virus doesn’t really change or mutate in significant ways. And three, we have a really successful childhood vaccination campaign. So with all those combined, we’re really not seeing cases of the measles.
Steven Newmark 09:35
That’s absolutely right. And each year, by the way, a certain number of cases do arise in the United States when travelers bring it into the country. But it has never gained a foothold here, or regained a foothold here, and continue to circulate because we have such strong community level protection.
Zoe Rothblatt 09:48
What’s interesting is the World Health Organization did issue a warning in 2019 that measles could become endemic again as a result of vaccine hesitancy. So you know, just having that really good childhood vaccine campaign and also a really effective vaccine is so important for keeping this at bay. And I guess, often we don’t really think about how good we have it until it’s gone. And we talked about this with COVID. This virus is not spreading because we’ve been so successful at it. So let’s keep that up.
Steven Newmark 10:17
I should just point out some differences between the measles vaccine and the COVID vaccine. The measles vaccine creates sterilizing immunity, the COVID vaccines do not do this. While vaccination reduces the chances that you might pass COVID on to someone else, contact tracing studies have shown that it still happens. So that is a major difference between the two vaccines.
Zoe Rothblatt 10:36
Yeah, that’s a really good point. Also, while the COVID vaccines don’t necessarily prevent transmission, they are really effective at reducing severe illness and hospitalizations and deaths, which to me, when I think about what I want a vaccine to do, it’s exactly that.
Steven Newmark 10:52
Yeah, I don’t want to go to the hospital. Or worse. You know, it’s interesting, just in talking about herd immunity and where we were at the beginning and the idea that okay, if we can get enough folks vaccinated, if enough folks, unfortunately, get infected and survive, they’ll have some immunity as well. It was that thought of getting to this herd immunity. It just makes me so angry about how the early days of the pandemic were handled. You can’t go back in time, but I think about H1N1, Ebola, swine flu, all the viruses that could have had a catastrophic impact globally, and these were all very relatively recent viruses and the way they were handled in each case, the world was alerted immediately. The world went on a quasi, not lockdown, but high alert at the airports, at incoming ports of call. In each case, we were able to tamp it down. I remember I personally was very active with Ebola in New York City and we had a case and the person was isolated and it never spread. I know you could say you’re comparing apples to oranges. COVID is perhaps more virulent, perhaps more transmissible, but it is interesting. And it scares me also for what could potentially come next. If we don’t learn from the mistakes that were made here.
Zoe Rothblatt 12:00
That also reminds me of when Zika was going around and how scary that was. And that, similar to COVID, you’re outside and you’re sort of trying to protect yourself and you don’t really know where it’s around. I think Ebola is way more symptomatic. And I just remember this fear of going outside during Zika. What are we learning from these crisises? Are we prepared for the next pandemic? I don’t know.
Steven Newmark 12:24
I know and probably at least in our country, worst of all, is incredibly our system of public health is perhaps weaker than it’s ever been. We spoke last week about the federal judge’s ruling that curtail the powers of the CDC to control and prevent diseases. So who knows whether it’s going to leave us the next time something arises or just in COVID, the next variant.
Zoe Rothblatt 12:45
You know, if we’re not going to reach herd immunity, and that’s likely it, what hope is there, what can we do?
Steven Newmark 12:51
Let’s end on a hopeful note. Number one, we know how to protect ourselves. When case loads are high in the area, and that’s a combination of official numbers, anecdotal stories, you hear from friends and family about cases rising. Perhaps wastewater reports, if you live in an area that’s testing wastewater. When cases are high, you know, to be safer. You know to say, “Look, I’m gonna stay in a lot more. Maybe I’ll even stay in 100% of the time have groceries delivered, I’ll go back to what I need to do,” if you’re able to do that. Number two is you know, the N95 masks, the KN94 masks, you know to mask up, you know to be extra safe about masking up. Number three, keep focused on the therapeutics that are available. If you suspect that you may have COVID, if you suspect that you may have interacted with somebody that is positive, test as often as you can. When you’re not testing, when you’re staying at home and feeling safe, just keep collecting as many free tests as you can. Keep stocking out because when you need to test, you need to test and as soon as you test positive, make sure you have a primary care doctor or whomever your go to doctor is, is ready to supply you with the needed therapeutics very quickly. One last thing, be healthy generally, you know. It’s always a good thing to live a healthy lifestyle.
Zoe Rothblatt 14:03
Yeah, that’s my game. Yes, be healthy. I love that.
Steven Newmark 14:06
Yeah. It’s like having an emergency plan, like what do you do when an emergency hits.
Zoe Rothblatt 14:11
Physically and mentally, you know, take care of all aspects of your well being. And I would also add just doing a little research. We talked about some of the new therapeutics out, it’s really good to know beforehand, before you’re in the situation so you know exactly what your doctor is talking about what you could take and just being really prepared in that sense that you have the knowledge going in. It makes it a lot easier to tackle the situation, when/if it comes. Hopefully, you don’t end up in that situation, but we really don’t know. Okay, Steven, that brings us to the close of our show. What did you learn today?
Steven Newmark 14:43
I learned from you about the remdesivir approval for children 12 and under. That’s great news. So I’m happy to hear that.
Zoe Rothblatt 14:50
And it was really interesting for me to think about herd immunity and how we’ve achieved it with other vaccines and the difference that you mentioned between the measles vaccine and the COVID vaccine.
Steven Newmark 15:02
Well, we hope that our listeners learn something too. We’d love to hear from you about your advocacy stories. Send you an email to [email protected] Or better yet include a short video or audio clip.
Zoe Rothblatt 15:13
And who knows, whatever you shared may be included in our listener feedback portion of future episodes.
Steven Newmark 15:20
Also, email us if you want to subscribe to our weekly newsletter, where we share the top health news of the week.
Zoe Rothblatt 15:25
Well, everyone thanks for listening to The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. If you like this episode, give us a rating and write a review on Apple Podcasts and hit that subscribe button wherever you listen. It’ll have more people like you find us. 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.
S3, Ep 16- “Wear the Damn Mask”
Not everyone is cheering the news that the mask mandate on planes and trains has ended. While the Justice Department is appealing that ruling, those most susceptible to contracting COVID fear for their health and safety. In this episode, our hosts can’t contain their frustration and anger at those adults unwilling to wear masks for the common good.
“I don’t understand all these adults that act like children. For the good of people who are suffering; from immunocompromised, elderly, or whatever the case may be, just like wear the damn mask for a little bit longer,” says Steven Newmark, Director of Policy at the Global Heathy Living Foundation.


S3, Ep 16 - "Wear the Damn Mask"
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Steven Newmark 00:09
I don’t understand all these adults that act like children. For the good of people who are suffering; from immunocompromised, elderly, or whatever the case may be, just like wear the damn mask for a little bit longer. 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 00:32
And I’m Zoe Rothblatt, Patient Advocate and Community Outreach Manager 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. But before we get started, we want to be sure that everyone takes a listen to all of GHLF’s great podcasts. We have so many to choose from.
Zoe Rothblatt 00:50
And an exciting new season two of Talking Head Pain just dropped. It’s really great.
Steven Newmark 00:56
Talking Head Pain is hosted by Joe Coe, who we’ve had on The Health Advocates before. And he does such a great job at sharing people’s migraine stories.
Zoe Rothblatt 01:03
And you can check them all out at ghlf.org/listen. So Steven, let’s start as we always do with a listener comment. Are you ready?
Steven Newmark 01:12
I am ready.
Zoe Rothblatt 01:13
This one is from slefko16, who wrote, “This podcast is truly awesome. It’s informative and super helpful.”
Steven Newmark 01:19
Well, you’re awesome too, slefko16. Thank you for the comment. We appreciate it.
Zoe Rothblatt 01:25
Steven, it’s a big week for healthcare news, we got a lot on our minds. Why don’t you kick us off.
Steven Newmark 01:29
Sure. You’ve probably heard that the mask mandate is going away, the federal mask mandate on transportation for flights, trains. And apparently the Centers for Disease Control and Prevention, according to one judge, does not have the actual authority to control disease prevention in the United States. So we will see what this means. We will see if there is an appeal. But as of our recording right now, there is no longer a mask mandate and mask requirement on travel.
Zoe Rothblatt 01:55
Make that make sense. The CDC doesn’t have the authority over disease prevention. That’s a oxymoron there.
Steven Newmark 02:03
Right, right. I definitely find myself getting very frustrated. I feel like, I feel like we’re in like a video game or something where each time we get to another level, it just gets harder and harder and harder. We started out with the first wave two years ago. And we all huddled inside we said this is how we’re going to protect ourselves. We got through that, they came up with the vaccines. The vaccines were great. It turns out they weren’t the lifesavers we had anticipated they might be but they’re still helpful.
Zoe Rothblatt 02:28
Like at that point. We are all in it together.
Steven Newmark 02:30
Absolutely.
Zoe Rothblatt 02:31
In that first wave, we were all, you know, in the house making banana bread, doing the Tik Tok dances. Like everyone was doing the same schtick day after day and we were just in it together.
Steven Newmark 02:40
Totally. So then all of a sudden comes this thing called Delta. Things are a little scarier out there. It’s like oh my gosh, this is happening again. Okay, but we learned a lot more about the masks. Maybe get stronger masks, better masks, the N95s. Then it gets even scarier. We’ve got Omicron that comes out this winter, the rates are going through the roof again, because this thing can evade vaccines, whatever the heck it does, we’re hunkered down for the most part. And now we’ve got another one. It’s like we’re on another level. There’s these variants, the BA.2 there’s another variant BA.12, BA whatever, there’s a lot of B variants out there. But at the same time we’re taking off our armor. We’re telling people, “Don’t bother masking, don’t do whatever. And it’s a personal decision. So yeah, if you want to go out and wear an N95 mask all the time, 24 hours a day, and be super safe. Go live in a cabin somewhere sure that’s your decision.” But it’s essentially saying to folks who do want to live safely who are immunocompromised, elderly, or whatever the case may be, “You’re on your own,” and it just feels so unfair. It’s like just going to be another level. When is it going to end? I’m frustrated. Sorry.
Zoe Rothblatt 03:41
I know, Steven. All the lessons feel like they’ve been unlearned by everybody, all the quote unquote healthy people out there that don’t seem to care and they’ve unlearned all the lessons about being in it together and protecting each other. I heard that the news came out that face coverings no longer are required while flights were in air.
Pilot 03:59
And I just checked with the company. The Delta position is masks will be optional this evening for all crew and passengers as well. So it is cause to celebrate, for those who want to wear masks please feel free to.
Zoe Rothblatt 04:13
They started cheering, ripping them off, celebrating
Pilot 04:16
It is optional and that way we can alleviate any stress and discomfort. Thank you very much.
Zoe Rothblatt 04:22
The source of celebration was, “We’ve been on these flights in tight air with face coverings and we’re so uncomfortable. So thank God it’s off.” And I’m like you could wear a face covering. People have serious illnesses and they’re worried about life threatening complications, and you’re just like a little bit uncomfortable. It makes my heart break that that’s where society is on both spectrums.
Steven Newmark 04:44
I don’t understand how all these adults that act like children and maybe it’s like a society thing. Just on a quick side note, I don’t know about you, when I ride public transportation in New York City now, there’s this new thing where people use their phones as if they are personal television sets and they hold them and they do not use headphones, and they run through Tik Tok all day long. I noticed that I was in a doctor’s office. And people were sitting there watching. I’m like, come on, like you can’t spend $2 on a cheap set of headset like what? Like, do you not realize what you’re doing is rude. And I translate it to what we’re talking about with the masks, I see so many adults who are just like, “I just can’t wear it anymore. I just can’t, I can’t be bothered to put a piece of cloth over my face.” Meanwhile, anecdotally at least, I see children and actual children who don’t complain about it, who wear it without complaining. So what is with the adults who are so immature that for the good of people who are suffering, just like wear the damn mask for a little bit longer. I understand when the cases are extremely low, when we’re in a dip, totally take them off. I totally get that. But we’re in this stage right now where it’s like Omicron part two, which is the B variants and they seem to be pretty transmissible. So it’s basically saying, “Yeah, live your own life, live your own life, great. If you’re immunocompromised, that means, you know, don’t leave your house or barely leave your house and make sure you’re wear N95s and face masks and whatever.
Zoe Rothblatt 06:00
Also for me, you know, if I’m outside, I’m not necessarily wearing a mask, and I make decisions to go inside and put on the mask. And this is like the ultimate inside on transportation. Windows aren’t really open, you’re in this tight incubator close to people. And to say that on like the ultimate inside scenario, you don’t have to wear masks. What does that say for everything else? I’m worried about going in the supermarket now. How can I expect anyone to wear masks there if you don’t have to wear it in this like tight enclosed space.
Steven Newmark 06:29
I know. It’s very frustrating.
Zoe Rothblatt 06:31
You know, at a quick glance, I saw major airlines make these statements that they prioritize health and safety and still encourage masks. And you know, I just want to say I agree with that. And while it may be just statements coming out from the airlines, and who knows what we’ll see, I definitely, you know, want to tell our listeners if you feel uncomfortable, a mask mandate removal doesn’t mean you don’t have to go maskless. You still can wear them and just wear it when you feel like you need to and want to.
Steven Newmark 06:57
Obviously we encourage everyone to continue wearing masks who feel based on your level of safety and comfort in particular the N95s and the KN94s and top quality masks. You know the truth is when you tell people it’s a choice, and the majority of people decide to take the masks off becomes a societal pressure to not wear the mask. And that starts to spread throughout society. So we’ll see what comes of it. Knock on wood. We’re hopeful that this new variant won’t spread. And I will just add that the White House is reviewing, as of our recording, and reviewing the court’s ruling and the Justice Department will decide whether it will appeal. This decision is at odds with the CDC who had recommended its order for passengers to wear face coverings be extended.
Zoe Rothblatt 07:36
We know this brings a lot of concern to our community. So just know we understand and we’ll keep talking about it.
Steven