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The Health Advocates

The Health Advocates

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

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Portrait of host Steven Newmark
Portrait of host Zoe Rothblatt

“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.

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“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 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.

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.”

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.

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.

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.

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.

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.

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.”

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.”

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.

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.

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.

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.

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.

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.

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.

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.

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 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 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 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 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 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 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 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 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 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 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 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 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.”

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 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 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 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 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 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.