The Health Advocates

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

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.

“The Health Advocates” is part of the Global Healthy Living Foundation Podcast Network and hosted by Steven Newmark and Zoe Rothblatt.

S6, Ep9- COVID After the End of the Emergency: What We’re Seeing

The hosts discuss the current state of COVID since the end of the public health emergency, including updates on case and hospitalization rates, CDC recommendations for improving air quality, promising results on an Evusheld replacement, and vaccine plans for the fall. They also cover the latest news on the debt ceiling, and recent FDA approval of Paxlovid, the antiviral treatment for COVID.

“Researchers estimated that based on COVID rates in January, Paxlovid can lead to 1,500 lives saved and 13,000 hospitalizations averted each week in the United States,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep8- Drug Shortages: What Patients Need to Know

In this episode, our hosts shine a light on a critical issue affecting patients all over the U.S. – drug shortages. Shortages have been reported for hundreds of drugs, and here we cover why this is happening and what you can do. We also cover the latest news on Ohio legislation to protect patients from copay accumulator adjustors and movement on the federal PBM transparency bill.

“Drug shortages is not a new problem, but currently, there are hundreds of drugs in scarce supply and that’s just hitting an all-time high for the U.S. It’s a really scary place to be in if you don’t know when the next shipment of your medication is going to be,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF.

S6, Ep7- Loneliness: A Public Health Crisis

U.S. Surgeon General Dr. Vivek Murthy recently announced a new crisis that is unfolding – “the epidemic of loneliness and isolation.” The hosts discuss the impact of loneliness, the reasons for the rise in social isolation, and break down the framework for proposed solutions. This episode also covers the latest news on The Safe Step Act, and quick poll results on chronic illness patients’ plans to get the second bivalent COVID booster.

“A new report from the Surgeon General says that social isolation’s effects on mortality are the equivalent of smoking up to 15 cigarettes a day,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep6- Moving Beyond the COVID Emergency: What It Means for Your Health Coverage

This week our hosts discuss the end of the COVID-19 public health emergency declarations in the U.S. by the World Health Organization (WHO). They dive into what this means for public health and access to vaccines, testing, treatments, and data collection.

“The emergency phase is over, but sadly, as we know, COVID itself is here to stay. On recommendation from the Emergency Committee, the WHO is setting up a review committee to advise on the creation of recommendations for countries on the long-term management of COVID,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep5- A Multifaceted Discussion on Policy and Health: Debt-Ceiling Debate, PBM Transparency, RSV Vaccines, and Osteoporosis

Today our hosts talk about the latest news on the debt ceiling, pharmacy benefit manager (PBM) reform, RSV vaccines, and 50-State Network advocacy activities in D.C. Our hosts are also joined by GHLF colleagues Adam Kegley, Manager of Global Partnerships, and Angel Tapia, Senior Manager of Hispanic Community Outreach, who discuss their work in osteoporosis advocacy, awareness, and education.

“Over 200 million people around the world live with it [osteoporosis]. It’s a pretty staggering number already, but the thing is that so many people go undiagnosed, because they think a fracture is just a fracture,” says Adam.

S6, Ep4- The Future of COVID Booster Shots

In this episode, our hosts discuss the learnings from the recent Advisory Committee on Immunization Practices (ACIP) meeting and what it means for COVID vaccine scheduling going forward. They also break down the latest on new COVID boosters, mifepristone, and results from the latest quick poll on stress and chronic illness.

“I feel like we’re not getting news specific to our community, so it feels really important for us to be breaking it down and talking about it. Because… a lot of science is talked about, and it’s hard to read the data sometimes, so just having time together to break it down is helpful,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF.

S6, Ep3- Breaking Down the Latest Health Headlines with Corey Greenblatt

In this episode, The Health Advocates are joined by guest co-host Corey Greenblatt, Associate Director of Policy and Advocacy at GHLF. Zoe and Corey dive into the latest news on mifepristone and the court ruling, promising research on a new mRNA cancer vaccine, and plans to expand health insurance coverage to DACA (Deferred Action for Childhood Arrivals) recipients.

“Nearly half of DACA recipients are uninsured, so when we talk about the importance of Medicaid expansion, or the importance of the Affordable Care Act expansion, or just generally affordable access to health care, this is something that is just exponentially more important for this group of people,” says Corey.

S6, Ep2- Revoking FDA Approval: The Implications for Drug Regulation and Patient Care

Our hosts share the latest news updates on COVID boosters, our patient support program quick poll results on exercise habits, and the recent decision by the Texas district federal court to ban the use of mifepristone, which threatens the authority of the U.S. Food and Drug Administration (FDA).

“This is the first time a judge has essentially overruled the FDA, and this ruling could open the door to lawsuits, to contest approvals or regulatory decisions related to other medications or vaccines,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep1- Protecting Patient Access to Health Care

Our hosts discuss important pieces of legislation in the U.S. that help improve access to care, both federally and around the states, and how the Global Healthy Living Foundation’s 50-State Network has been advocating on the ground. The hosts also break down big news in health insurance, including the recent attacks on the Affordable Care Act and why millions may soon lose access to Medicaid.

“During the pandemic… Medicaid enrollment grew by 5 million people between 2020 and 2022. So that’s a lot of people who are on it [Medicaid] and could potentially be losing coverage, maybe even more than that. And it’s already starting to happen around some states,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF.

S5, Ep23- COVID at Year 3: What We’ve Learned

It’s been three years since the World Health Organization declared COVID-19 a pandemic. Our hosts talk about where we are at now with fighting the virus, what we’ve learned over the years, and how our community is feeling.

“Early on, I felt like there was a high level of concern for the community, for others. People masking up for others, for those in the community who have chronic disease, who are elderly. And that seems to have just gone by the wayside,” says co-host Steven Newmark, Director of Policy at the Global Healthy Living Foundation.

S5, Ep22- A Closer Look at COVID Data and Vaccines

This week, our hosts break down discussions from the recent meeting held by the Advisory Committee on Immunization Practices (ACIP), a group of advisors to the U.S. Centers for Disease Control and Prevention (CDC). The updates include reassuring data on the safety of vaccines, who is getting hospitalized for COVID, and the role of vaccine boosters now and in the future.

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

S5, Ep 21- Exploring Meta Analysis of COVID Masking Study

This week the hosts cover the latest news on the origins of the COVID-19 pandemic, the newly authorized rapid at-home test for flu and COVID, and new RSV vaccines on the horizon. The hosts dive deep into a new Cochrane review about the effectiveness of masks against flu and COVID, and how it compares to other studies on how masks work.

“Based on the studies that are out there in controlled environments when individuals are masked properly, it does help stop the spread and it certainly protects those who are wearing the masks,” says Steven Newmark, Director of Policy at GHLF.

S5, Ep 20- Paying it Forward: The Journey to Becoming a Psoriatic Arthritis Advocate

This week, the hosts cover the latest news on the HELP Copays Act, new research findings on COVID reinfection hospitalizations, and tips related to Heart Health Month. The hosts are also joined by patient advocate Eddie Applegate, who shares his psoriatic arthritis journey.

“If I’m able to share my story with others in a way that can help them in a way that I didn’t have when I was first diagnosed … that would be just a great opportunity to pay it forward,” says Eddie.

S5, Ep 19- Advocating this Black History Month

This week the hosts cover the latest news on copay assistance, the FDA’s finalized guidance on clinical research for cannabis, and New York’s decision to end the mask mandate in health care facilities. The hosts also discuss the importance of sharing Black patient stories this Black History Month while shining a light on health disparities.

“Going to Capitol Hill, going to your state legislators, and just telling them your stories, it’s such a big deal. And when you say amplifying patient voices, that’s what we mean. When we talk about amplifying Black patient voices and their experiences, it’s the exact same thing,” says Steven Newmark.

GHLF Black History Month:

S5, Ep 18- Building Better Ancestors with Dr. Mark Rosenberg and Maria Thacker Goethe

The Health Advocates are joined by Dr. Mark Rosenberg and Maria Thacker Goethe to learn about the Building Better Ancestors project, and their work on improving access to affordable care. Dr. Rosenberg and Maria help us understand public health problems, how we can use past learnings as framework to improve our future, and the steps that can lead us to solutions that promote health equity.

“And we’ve taken nine lessons from the eradication of smallpox, that we think make a really useful framework for thinking about diseases, — whether it’s a new pandemic threat, whether it’s a chronic disease, or I think it’s useful even from the perspective of an individual patient,” says Dr. Rosenberg.

S5, Ep 17- The End of the Public Health Emergency: What’s Our COVID Action Plan?

This was a big week for health news. We learned that the U.S. will end the COVID public health emergency in May, Evusheld is no longer authorized by the Food and Drug Administration (FDA) and the FDA is meeting about an annual COVID vaccine strategy. What does this mean for you as someone who lives with chronic illness? The Health Advocates break down the pros, cons, and questions that remain.

“It just is kind of upsetting when you realize how health care can be offered so efficiently and now funds are going to be decreased and barriers are going to be put in place to access these different services. And it’s upsetting to go backwards. And that declaration means we have to go backwards in care,” said Zoe Rothblatt, MPH, Associate Director, Community Outreach.

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.”