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.

The Balancing Act of Chronic Illness with Shonta Chambers

We’re joined by Shonta Chambers, who serves as the Executive Vice President-Health Equity Initiatives and Community Engagement for the Patient Advocate Foundation (PAF). Shonta explains how social drivers impact one’s health, including things such as housing and economic status. We dive into the case work she does with PAF to combat these challenges and connect patients to resources. She also shares about her personal journey of being a caregiver.

For more information about the Patient Advocate Foundation visit: www.patientadvocate.org

“Advocate for Yourself and Don’t Give Up” with Cyndi Lauper and Michelle Bernstein

The Health Advocates are joined by singer, songwriter, actress, and activist Cyndi Lauper and chef and restauranteur Michelle Bernstein to talk about their journey with psoriasis and psoriatic arthritis. Recently, the two of them have joined forces to bridge the worlds of music and cuisine to deliver a powerful message of hope and empowerment for patients living with psoriatic disease. Here, they share about their personal journeys with diagnosis, the importance of connecting with other patients, and why they are spreading awareness.

For more information on the resources mentioned by Cyndi Lauper and Michelle Bernstein, you can visit: ThePSConnection.com

Beyond the Gut: Creating Change for LGBTQ+ IBD Patients with Dr. Carlton

Zoe and special co-host Adam Kegley, Associate Director of Global Partnerships at GHLF, are joined by San Diego-based gastroenterologist Carlton Thomas, MD, to learn all about LGBTQ+ health and inflammatory bowel disease (IBD). Dr. Carlton shares how not enough people are talking about sexual health and IBD, how people can have more open and honest conversations with their doctors, and the challenges faced in the LGBTQ+ community when it comes to accessing health care.

If you are an LGBTQ+ person living with IBD, make your voice heard and take the survey at https://bit.ly/lgbtq-ibd

“Obesity is a Disease” with Kristal Hartman from Obesity Action Coalition

We’re joined by Kristal Hartman who is a proud member of the Obesity Action Coalition (OAC) and is honored to serve as the Chair of the OAC National Board of Directors. In this episode, we learn about her patient journey, including her bariatric surgery in August 2014, which she describes as the hardest and best decision she ever made for herself. She shares how she now fights for access to quality, compassionate, and affordable access to care for all people living with the chronic disease of obesity.

Chronic Resilience: Jae Walker’s Journey

In this episode we are joined by Jae Walker, who lives with multiple autoimmune diseases including rheumatoid arthritis, fibromyalgia, and a rare neurological disease. Jae shares their emotional journey to diagnosis, offering advice for other people living with chronic illness on advocating for yourself and not giving up.

Measles Outbreak: A Look at Florida’s Response

Measles has been reported in about a dozen states across the U.S. this year. In this episode, we’re discussing Florida’s response to this recent outbreak, and why it’s not in the best interest of protecting public health. In the news recap, we give an update on our advocacy related to Prescription Drug Affordability Boards (PDABs), discuss how nonprofits profited from COVID misinformation, explore lessons from a new report on vaccines, and talk about the rise in norovirus cases.

New COVID Isolation Guidance? What Immunocompromised Need to Know

The Washington Post released a story that the CDC is considering replacing the COVID five-day isolation period guidance with staying home until 24 hours fever free and improving symptoms. In this episode, we’re breaking down all we do and don’t know so far about COVID, its impact, and this potential change in recommendation from the CDC.

In the news highlights, we discuss how unfortunately two million Texans have lost Medicaid coverage, and we also share the latest results on our quick poll on the patient experience with clinical trials.

Health Equity and Black History Month: Breaking Down Barriers

Black History Month is a time to celebrate the great achievements and commemorate important Black heroes and events throughout our history. It’s also a time to reflect and raise awareness of racial and ethnic disparities across health care sectors.

The Health Advocates are joined by Sarah Shaw, Senior Manager of BIPOC Community Outreach at GHLF for a discussion on the disproportionate burden of chronic disease in the Black community, barriers to health care, addressing racism in health care, and ultimately how we can come together as a community and advocate for our health year-round. In this conversation, we delve into actionable steps for fostering inclusivity and driving future advancements in health care access and equity.

Prescription Drug Affordability Boards: What Patients Need to Know

About half of U.S. adults say it is difficult to afford health care costs, and about one in five adults say they have not filled a prescription because of the cost. So, what can we do about lowering costs to ensure timely access to affordable care and treatment? In this episode, the hosts give us the 411 on Prescription Drug Affordability Boards (PDABs), how they aim to reduce drug prices, and why patients must be part of this process.

Advocacy in Action: Shaping 2024’s Health Care Policies with Corey Greenblatt

Corey Greenblatt, Associate Director of Policy and Advocacy at GHLF, joins Zoe Rothblatt, Associate Director of Community Outreach at GHLF, as co-host of this episode to share advocacy and policy priorities for the patient community in 2024. Corey breaks down which states are active in passing legislation that protects patients from step therapy and copay accumulators, and how patients can share their story to help pass these laws. Corey also highlights the need for patients to share their story to prescription drug affordability boards (PDABs). Finally, Corey shares federal policy updates, including exciting momentum for The Safe Step Act.

Measles Outbreak: Where’s the Public in Public Health?

With measles outbreaks making headlines in the U.S., The Health Advocates are diving into the history of measles in this country, how we got to these outbreaks after eliminating measles, the role of public health trust, and where we go from here to rebuild public health authority.

“I think there tends to be this idea that the measles is just a rash or some spots on your skin. But no, and when you contract it, it’s pretty bad,” says Steven Newmark, Director of Policy at GHLF.

The Latest News: Drug Imports, Biosimilars, and COVID/Flu/RSV Season

The Health Advocates are back and breaking down all the latest news so far in 2024. Steven gives us a debrief on what to look for this election year. We then dive into Florida’s plan to import drugs, why you may be switched from Humira to a biosimilar, and finally the latest hospitalizations and case rates this respiratory illness season.

From Frustrations to Action: Lessons Learned from the PMR Community

In the third episode of our three-part series on polymyalgia rheumatica (PMR), we are joined by JP Summers, Patient Advocate and Community Outreach Manager at GHLF. JP shares what she’s learned from people living with PMR about managing their symptoms and advocating for themselves at doctor’s appointments.

JP and Zoe Rothblatt, Associate Director of Community Outreach at GHLF, talk about the challenges of discussing health issues with loved ones but emphasize how these conversations can provide crucial support in diagnosing and managing PMR.

This episode was made possible with support from Sanofi.

My Gut Check: When I Took Charge of My IBD with Basmah

Basmah joins The Health Advocates to share her Crohn’s disease patient journey. Initially, Basmah admits to not paying much attention or learning about her Crohn’s — and she fell behind because of her symptoms. This sparked her to do an online deep dive, learn about the disease, and start a journey of trial and error with lifestyle interventions and medicine.

Basmah’s advice for others: “If one treatment or one lifestyle doesn’t work out for you, there are so many other options right now. And the important thing is that you educate yourself, you have the opportunity and the resources to do so. And it’s so important to connect with other people who have similar experiences with you.”

This episode was made possible with support from Walgreens.

Linda’s Polymyalgia Rheumatica Journey: From Extreme Pain to Advocate

About a year ago Linda Rinaldi began to feel full body pain. It felt like she had exercised too much, but when it became more extreme, she knew something was wrong. In a matter of days, she was diagnosed with polymyalgia rheumatica (PMR), a condition she had never heard of. Linda joins this episode of The Health Advocates to share her PMR patient journey and how the diagnosis ultimately led her to becoming a health advocate through sharing her story.

Linda encourages others to listen to their body and speak up: “My advice is: don’t stop. Tell the doctor; tell as many doctors as will listen to you what your symptoms are and advocate for yourself. You have to because if you don’t, nobody else will do it. And nobody knows your body, what you’re feeling, and what you’re going through better than you.”

This episode was made possible with support from Sanofi.

Crohn’s and Colitis Awareness Week with Pharmacist Mallory Schmoll

It’s Crohn’s and Colitis Awareness Week and we are joined by Mallory Schmoll, PharmD, Clinical Pharmacy Strategy at Walgreens. Mallory explains what IBD is, how it differs from irritable bowel syndromes (IBS), and the available treatments for patients. We also discuss the different types of remission, along with what it means to achieve remission, and questions to ask your doctor or pharmacist as you develop a treatment plan.

This episode was made possible with support from Walgreens.

Talking Turkey Day and Copay Assistance

It’s our annual Turkey Day Talking Points episode! Our hosts discuss their favorite Thanksgiving foods and what they are especially grateful for. For this year’s Thanksgiving table conversation, our hosts are focused on copay assistance, accumulators and maximizers. They break down how to start a conversation about your advocacy efforts, and the topline points of what you and your friends and family need to know about these assistance programs and insurance practices.

American College of Rheumatology Convergence 2023: Live with Shelley Fritz, Patient Education Fellow at GHLF

Zoe is live at the American College of Rheumatology (ACR) 2023 Convergence and is joined by patient advocate Shelley Fritz who lives with rheumatoid arthritis (RA).

Shelley describes her patient perspectives poster about how using the Mediterranean diet has led to significant enhancements in her quality of life through increased energy, reduced fatigue, less pain, and a greater willingness to socialize with family and friends.

American College of Rheumatology Convergence 2023: Live with Patient Eileen Davidson

Zoe is live at the American College of Rheumatology (ACR) 2023 Convergence and is joined by patient advocate Eileen Davidson who lives with rheumatoid arthritis.

Eileen discusses her patient perspectives poster about building a support group as a secure haven for people living with arthritis. Eileen describes how connecting with peers can transform the patient journey.

American College of Rheumatology Convergence 2023: Live with Occupational Therapist and Patient Cheryl Crow

Zoe is live at the American College of Rheumatology (ACR) 2023 Convergence and is joined by occupational therapist and patient advocate Cheryl Crow, who lives with rheumatoid arthritis.

Cheryl discusses her involvement with ACR, shares her key takeaways from this year’s conference, and offers a sneak peek into her two upcoming talks centered around podcasting and helping her peers with rheumatic disease navigate the workplace.

American College of Rheumatology Convergence 2023: Live with Patient Dana Guglielmo

In this special episode, Zoe is live at the American College of Rheumatology (ACR) 2023 Convergence and is joined by patient advocate Dana Guglielmo who lives with rheumatoid arthritis.

Dana shares about her patient perspectives poster where she uses data to manage her health information. She encourages patients to make their own “Dana’s Dashboard” and find what works for them to take control over their health information.

Episode Note:

You can download Dana’s dashboard template via the link below: https://docs.google.com/spreadsheets/u/0/d/1RPCM-4KZ_tXb7uZGxNirZ_l5aiXwZyLjKAZ1CIhpU2M/htmlview

S6, Ep 26- Diagnosis, Symptoms and Treatment: Understanding Polymyalgia Rheumatica with Dr. Grace Wright

The Health Advocates are joined by rheumatologist Dr. Grace Wright to learn about polymylagia rheumatica (PMR). Dr. Wright shares about the diagnosis process of PMR and how we must do better on shortening the time to diagnosis and getting patients treated. She also discusses common symptoms and telltale signs of PMR interfering in everyday life.

“I think the most important thing always in rheumatology is to remember the [patient] story is the most critical,” says Dr. Grace Wright.

This episode was made possible with support from Sanofi.

S6, Ep 25- Your Guide to Open Enrollment: From Deciphering Insurance Jargon to Making Informed Choices

The Health Advocates discuss the latest news on the change in insurance coverage of COVID-19 treatments and a recent approval of a meningococcal vaccine. For the main topic, The Health Advocates dive into everything you need to know about open enrollment for health insurance. They cover common insurance terms, the difference in plans, what enrollment numbers look like, and what you should look out for when choosing a plan.

“Many people are surprised to find out that even within the same ‘metal tier,’ the range of services and network coverage can differ significantly. That’s why it’s crucial to read the plan details, not just the price tag,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep 24- The Road to an IgG4-RD Diagnosis: How Nika Beamon Advocated

The Health Advocates are joined by Nika Beamon who lives with IgG4-related disease (IgG-RD), a group of fibroinflammatory conditions that can impact various tissues, often leading to tumor-like growth or organ dysfunction. Nika shares her 17-year journey to an IgG4-RD diagnosis, including how she advocated for herself. She offers valuable tips for fellow chronic illness patients, highlighting the unique considerations people with autoimmune diseases have in everyday life.

“So there’s so many things that do alter your life. But at the end of the day, you got one life, so you got to live it, and so I just choose to live it regardless of the fact that this is how it’s built,” says Nika.

This episode was made possible with support from Horizon Therapeutics.

S6, Ep 23- Nobel Prize Recognizes Scientists Behind COVID-19 Vaccine

Our hosts discuss the latest news on the Novavax COVID vaccine approval, a lawsuit benefitting patients using copay assistance, and what cases the Supreme Court will hear this month. For the main topic, The Health Advocates congratulate Katalin Karikó and Drew Weissman, who were awarded the Novel Prize for their work on the COVID vaccine, and take a look at the pathway to discovering mRNA technology.

“They [Katalin Karikó and Drew Weissman] get a cash award… but even more than that, they have the satisfaction of knowing that their work has saved millions of lives already and will continue to save millions more in the decades to come,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep 22- Advocating One Patient at a Time with Julie Baak

The Health Advocates are joined by rheumatology practice manager Julie Baak who talks about how insurance practices like utilization management delay treatments for patients, how she and her practice advocate for patients, and how she makes noise about these issues within the rheumatology community.

“You know, the right medicine for the right patient is really the driving focus of our practice. And I don’t have a magic wand. I advocate one patient at a time, and I’m pretty successful at it,” says Julie.

S6, Ep 21- Time to Roll Up Your Sleeves: Prepping for the 2023-2024 COVID Vaccine

Our hosts discuss the latest news on a federal health care transparency bill and what you need to know this Asthma Peak Week. For the main topic, The Health Advocates break down all that was discussed during the recent Advisory Committee for Immunization Practices (ACIP) meeting about the fall COVID shots. They talk about the recent vaccine approvals, COVID hospitalization rates, long COVID, and vaccine effectiveness.

“We learned [during the ACIP meeting] that with hospitalizations, rates across all groups have been rising since July 2023… The most prevalent underlying condition amongst adults ages 18 and older for those who are hospitalized for COVID included cardiovascular disease, neurologic disorders, diabetes, obesity, asthma, and chronic lung disease,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF.

S6, Ep 20- The Inflation Reduction Act: What Chronic Illness Patients Need to Know

The Health Advocates are joined by Corey Greenblatt, Associate Director of Policy and Advocacy at GHLF. Together, they take a close look at the provisions in the Inflation Reduction Act (IRA), how these impacts health care costs, and what it means for people living with chronic illness.

“We have to really look at it through all sides, and really have to make sure that patients are staying involved in understanding the impact of this provision [drug pricing negotiation], because this provision will have an impact on patients,” says Corey.

S6, Ep 19- Steering Through Pirola: A New COVID Variant on the Horizon

Our hosts cover the latest news on Medicare price negotiations, new CDC data on asthma related emergency visits, and the RSV vaccine. For the main topic, The Health Advocates take a look at yet another COVID variant and its potentially worrisome mutations, the rise in COVID related ER visits, masking practices, and what this means for the fall booster shot.

“And you know, despite the increase, just going back to the point, I just made it still far below what we’ve seen in the U.S. in the past, the current level of COVID hospitalizations is a third of it was a year ago at this time,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF.

S6, Ep18- Navigating the New Wave: Staying Safe During EG.5

Our hosts cover the latest news on large health insurers’ plans to drop prior authorization requirements and the latest CDC data on long COVID in the U.S. For the main topic, the Health Advocates continue their discussion from the last episode on the rise in COVID cases and answer some common questions. They break down what you need to know about insurance coverage and expiration of at-home COVID tests, quarantine requirements for a positive test, how long you can expect to be symptomatic, and masking guidelines.

“Some places are seeing 50% or more increases week to week, there’s no mistaking two things; Number one COVID is back, number two, it’s not as bad as it was in the past,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep17- New COVID Subvariant: How Worried Should You Be?

Our hosts cover the latest news on the CDC recommendations for the RSV shot for infants and what access issues patients are experiencing when filling their methotrexate. For the main topic, the Health Advocates give an update on this new phase of COVID and discuss the rise in cases in the U.S., the new subvariant, and COVID projections.

“COVID-19, as with other illnesses is different if you have a chronic condition… so it hits different portions of the population differently. And for our population, it still matters. And you know, frankly, it should matter for everyone. And even if you don’t have a chronic condition, you likely don’t want to contract COVID. But also, you don’t want to spread COVID to others who are more vulnerable than you are,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep16- Rising Temperatures: A Public Health Concern

Our hosts cover the latest news on new trials for treatment for long COVID and the surge of people losing Medicaid coverage. For the main topic, our Health Advocates discuss heat waves’ impact on public health, how we can advocate and be better prepared, and what you need to know as someone who lives with chronic illness.

“It’s frustrating that we even have to take an episode to talk about the weather, but it truly is a public health hazard… For quite a number of years, we could look at heat and say that’s something that happens elsewhere, but it’s here, it’s in the United States, it affects all of us,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep15- 2023 Health Policy: Where Are We At?

Conner Mertens, Patient Advocate and Community Outreach Manager at GHLF, joins our host Zoe Rothblatt, Associate Director of Community Outreach, as guest co-host to cover the latest news on the FDA approved RSV shot for infants, a new pandemic preparedness office, insurance coverage for mental health, and results from our latest quick poll. For the main topic, Conner and Zoe discuss active health care bills around the states, updates on the Safe Step Act and HELP Copays Act and how our 50-State Network is advocating.

“It really is powerful when you get to walk into a lawmaker’s office with a patient who has a very personal story, and that the laws that these folks are passing can really impact their lives. And to hear from those lawmakers that it’s the first time they’ve spoken directly to a patient about how these bills that they’re working on will change their day to day is a wonderful thing that we get to see firsthand,” says Conner.

S6, Ep14- Why Safeguarding and Advocating for Patient Assistance Programs is Important?

The Health Advocates are joined by Dr. Robert Popovian, Chief Science Policy Officer at GHLF, to learn about a free, interactive tool which shows that state laws banning accumulator and maximizer clauses in health insurance policies have not increased the cost of health insurance. Robert breaks down health care terms, talks about the impact of insurance practices on patient’s access to affordable care, and how we can use this tool to advocate amongst stakeholders.

“So these patient assistance programs get captured by Pharmacy Benefit Managers (PBMs) and the insurers as profit, and the patient is almost like double billed, because not only do they have to pay for their medicine, but they have to also pay for the deductible twice,” says Dr. Robert Popovian.

S6, Ep13- Pandemic Preparedness and the Rising Malaria Threat

Our hosts cover the latest news on drug shortages in the U.S., and the reauthorization of the Pandemic and All Hazards Preparedness Act (PAHPA). For the main topic of the episode, our Health Advocates discuss what we know so far about the recent malaria cases in the U.S., and the importance of a public health response and local health advocacy to make your voice heard.

“For the first time in two decades, federal health officials have confirmed malaria infections in people who did not travel outside of the United States, leading officials to warn about the potential transmission of the mosquito-borne disease within our country,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep12- Navigating COVID Updates: The Latest from the FDA

Our hosts cover the latest on new CDC leadership, why millions are getting disenrolled from Medicaid, and the latest quick poll results from GHLF’s Patient Support Program. For the main topic of the episode, our Health Advocates dive into the recent FDA committee meeting on recommendations for the COVID-19 vaccine.

“The FDA uses advisory committees generally to: 1. get advice from experts who work outside the agency; 2. work towards transparent and open government; and, 3. to encourage patients, health care providers, and other interested people to share their views during open public hearings or by submitting comments to their docket,” says Steven Newmark, Director of Policy at GHLF.

S6, Ep11- Breaking the Stigma: GHLF HEROES

This week, our hosts are joined by Seth Ginsberg, Co-founder and President of the Global Healthy Living Foundation, to learn about the HEROES (Health Education + Reliable Outreach + Empathetic Support) program. HEROES is a free education and outreach initiative that equips beauty professionals to better support clients living with scalp and other skin conditions. Seth reminds us of the importance of community support, personalized care, and empathy toward each other.

“As patients, this is a chance to really not just fight stigma, but beat it back. And it starts literally at a place like a salon or barbershop where this is like a house of influence, if you will. And if we can give them at least what they ought to know and think about these conditions that’s a massive leap forward,” says Seth Ginsberg.

S6, Ep10- Debt Ceiling Catastrophe Averted: How Health Care is Impacted

Our hosts discuss the Canadian wildfires and what you need to know about the air-quality alerts in the U.S. They also cover the latest news on arguments about ACA preventive care coverage, a new CDC report on prescription drugs, and the FDA’s decision to revoke authorization of the Johnson & Johnson COVID-19 vaccine. Later in the episode, the hosts have a discussion on the debt ceiling negotiations, the budget cuts, and how the deal impacts health care going forward.

“The Republican Party took power in the House of Representatives and over the last election, they had a set of priorities and things that they wanted to negotiate. The Democrats hold the Senate and the White House, and they have their priorities. They came together and hammered out a deal that leaves both parties, both sides, equally happy and also dissatisfied at the same time,” says Steven Newmark, Director of Policy at GHLF.

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.