The Health Advocates: Recent Episodes
Global Healthy Living Foundation
A podcast that breaks down major health news of the week to help you make sense of it all. 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.
Public health threats often seem unrelated until we examine the systems that connect them. In this episode of The Health Advocates, Steven Newmark discusses the record-breaking rise in U.S. measles cases, recent foodborne illness outbreaks, changing COVID-19 activity, and the health risks associated with wildfire smoke.
Steven explains what these developments mean for patients, caregivers, and people living with chronic illness, including practical steps related to vaccination, food recalls, testing, treatment planning, and air quality. He also examines the larger forces shaping these stories, including declining vaccine confidence, gaps in public health communication, and the importance of strong disease surveillance.
The episode also highlights encouraging news, including progress toward a new Ebola vaccine and El Salvador’s elimination of trachoma as a public health problem.
Together, these stories show what happens when public health protections weaken, and what communities can achieve when science, communication, and sustained investment work together.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Amelia Violet Prouse, Associate Podcast & Video Producer at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
The COVID-19 public health emergency may be over, but for millions of Americans with weakened immune systems, the virus remains a serious concern.
In this episode of The Health Advocates, Steven Newmark breaks down a recent announcement from the U.S. Department of Health and Human Services to phase out COVID-19 Emergency Use Authorizations (EUAs) and explains why the decision matters for people who are immunocompromised. The transition will require the FDA to establish new regulatory pathways for certain COVID-19 drugs and biologics over the coming year, raising important questions about how patients will continue to access preventive therapies during that process.
Steven explains what an EUA is, why some immunocompromised patients need additional protection beyond vaccination, and why patient voices are essential as the FDA considers its next steps. Most importantly, he discusses how thoughtful patient advocacy can help ensure that regulatory decisions remain focused on science, continuity of care, and the needs of those who remain most vulnerable to COVID-19.
Whether you're living with a chronic illness, caring for someone who is immunocompromised, or simply interested in how health policy affects patient care, this episode offers an accessible look at an important issue that could shape COVID-19 prevention for years to come.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Amelia Violet Prouse, Associate Podcast & Video Producer at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
As the United States celebrates its 250th birthday, The Health Advocates takes a look at a different kind of American history, the story of our nation's fight against disease and the policies that have shaped the health of millions.
Host Steven Newmark traces 250 years of U.S. health policy, beginning with George Washington's bold decision to inoculate the Continental Army against smallpox and continuing through the development of life-saving vaccines, the creation of the National Institutes of Health, the Centers for Disease Control and Prevention, Medicare, Medicaid, and the Department of Health and Human Services.
The episode also explores America's response to major public health emergencies, from the 1918 influenza pandemic and HIV/AIDS to COVID-19, including the remarkable development of mRNA vaccines and what they may mean for the future of medicine.
Whether you're a history buff, a healthcare professional, or simply curious about how science, public policy, and innovation have transformed American life, this special Independence Day episode offers a fascinating look at the milestones that helped Americans live longer, healthier lives over the past two and a half centuries.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Amelia Violet Prouse, Associate Podcast & Video Producer at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
What happens at one of the world's largest rheumatology conferences, and why should patients care?
In this special episode of The Health Advocates, Steven Newmark is joined by Dr. Shilpa Venkatachalam, Director of Patient-Centered Research at the Global Healthy Living Foundation (GHLF), to discuss the biggest takeaways from EULAR 2026, the annual congress of the European Alliance of Associations for Rheumatology.
The conversation explores why conferences like EULAR are so important for advancing patient care, how researchers, physicians, and patient advocates work together to shape the future of rheumatology, and why the patient voice has become an essential part of medical research.
Steven and Shilpa also highlight GHLF's contributions to this year's conference, including two original research posters examining barriers to the early recognition of hidradenitis suppurativa and the unmet informational and support needs of people living with Sjögren's disease. Along the way, they discuss exciting emerging trends in rheumatology and clinical care, especially the increasing emphasis on patient-reported outcomes.
Whether you're living with a rheumatic disease, caring for someone who is, or simply interested in the future of healthcare, this episode offers an inside look at how today's research is helping shape tomorrow's treatments—and why patient perspectives are more important than ever.
Access the GHLF HS Diagnosis Accelerator: https://ghlf.org/hscheck/
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Amelia Violet Prouse, Associate Podcast & Video Producer at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
What actually happens at a major international medical conference — and why should patients care?
In this episode of The Health Advocates, Steven Newmark reports from EULAR 2026 in London, one of the world’s largest rheumatology conferences, to explain how meetings like this help shape the future of patient care. The episode explores why conferences matter not just for doctors and researchers, but for patients and advocacy organizations as well.
Steven discusses how practicing clinicians learn about the latest medical advances, how researchers connect directly with physicians treating patients every day, and why organizations like GHLF play an important role in bringing real-world patient experiences into scientific and medical conversations.
The episode also highlights several emerging themes already generating excitement at EULAR this year, including the growing role of artificial intelligence in rheumatology and the potential future of CAR-T and cell therapies for autoimmune diseases like lupus and rheumatoid arthritis.
Most importantly, the conversation explains how scientific innovation ultimately connects back to what matters most: improving the daily lives of patients.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Amelia Violet Prouse, Associate Podcast & Video Producer at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Something bigger than a single vaccine debate is unfolding inside America’s public health system.
In this episode of The Health Advocates, Steven Newmark explores the growing tension surrounding vaccine policy, scientific transparency, and public trust. From the FDA’s decision not to review a new mRNA flu vaccine application to reports of delayed vaccine safety studies and shifting federal recommendations, the episode connects a series of recent developments that together point to a broader transformation inside federal health agencies.
The conversation examines why some officials argue these changes are restoring scientific rigor, while many scientists and public health advocates worry they are creating confusion and weakening confidence in vaccines. Most importantly, the episode focuses on what this means for patients trying to navigate healthcare decisions in an increasingly uncertain environment.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Amelia Violet Prouse, Associate Podcast & Video Producer at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
The federal budget may feel distant, but its impact on healthcare is anything but. In this episode of The Health Advocates, Steven Newmark breaks down the Trump administration’s newly proposed budget, which includes significant cuts to the Department of Health and Human Services, reductions in research funding, and a major restructuring of federal public health programs.
But this conversation goes beyond what’s proposed. We also examine what’s already happening on the ground following last year’s federal policy changes, including substantial reductions in Medicaid funding that are placing pressure on state budgets and leading to coverage losses for millions of Americans.
This episode connects the dots between federal decisions and real-world consequences — from access to care and public health preparedness to the future of medical research. For patients, caregivers, and advocates, it offers a clear look at where healthcare policy is heading and why these budget decisions matter now.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Amelia Violet Prouse, Associate Podcast & Video Producer at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
A federal court has halted sweeping changes to U.S. vaccine policy, raising fundamental questions about who shapes public health decisions and how those decisions are made. In this episode, we break down the ruling, the role of the CDC’s vaccine advisory committee, and why the court found the administration’s actions unlawful. We also explore what this means for patients, providers, and the future of evidence-based policymaking.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Amelia Violet Prouse, Associate Podcast & Video Producer at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
For people living with osteoarthritis, news about potential new treatments often comes with more questions than answers. In this episode of The Health Advocates, we slow things down to explain what it really means when a company submits a New Drug Application, or NDA, to the U.S. Food and Drug Administration.
Steven Newmark is joined by Erich Horsley and Dr. Yusuf Yazici from Biosplice Therapeutics to walk through this important regulatory milestone and why it matters for patients. Together, they break down what an NDA is, what happens during FDA review, and what patients should and should not expect while a therapy is under evaluation. The conversation also explores the current osteoarthritis treatment landscape, why progress in this disease has been so challenging, and what researchers mean when they talk about disease-modifying approaches.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
This week on The Health Advocates, we unpack a series of developments that signal a pivotal moment in U.S. health policy. The FDA has refused to review Moderna’s new mRNA-based flu vaccine, raising questions about regulatory standards and the future of vaccine innovation. At the same time, the Trump administration has launched TrumpRx, a new prescription drug discount platform that promises savings but faces scrutiny over its scope and real-world impact.
We also examine new polling showing declining confidence in flu, COVID-19, and MMR vaccines, and the growing legal battle over changes to the federal childhood vaccine schedule. With public trust, regulatory rigor, and patient access all in play, this episode breaks down what these headlines mean for patients — and why clarity and credible science matter more than ever.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Congress has passed, and President Trump has signed, a major government funding bill that includes a wide range of health care policies, from telehealth extensions and hospital-at-home programs to long-sought reforms targeting pharmacy benefit managers. But alongside those wins, the legislation also raises serious questions about the future direction of federal health policy.
In this episode of The Health Advocates, Steven Newmark breaks down what the new spending package actually does for patients, what it leaves unresolved, and why some lawmakers and advocates are uneasy about increasing funding for federal health agencies under current leadership. The conversation explores how these decisions affect access to care, drug costs, public health programs, and trust in health institutions.
Whether you’re a patient, caregiver, clinician, or advocate, this episode offers a clear, practical look at how congressional budget decisions shape health care on the ground, and why continued engagement and oversight matter more than ever.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, Steven Newmark sits down with Dr. Cynthia Overton to explore what person‑centered care truly looks like, through the eyes of someone who has lived it.
At age 26, Cynthia experienced a sudden spinal cord injury that left her temporarily paralyzed—an event that fundamentally reshaped her understanding of health care. Today, she draws on both lived experience and evidence‑based frameworks to help organizations and individuals rethink how care is delivered, with an emphasis on dignity, communication, and whole‑person support.
Together, Steven and Cynthia discuss disability inclusion, health equity, and why every patient interaction has the power to transform not only individual outcomes, but the system as a whole.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, Steven Newmark breaks down a surprising moment of bipartisan agreement in Congress: a new Health and Human Services funding bill that includes meaningful wins for patients and public health.
From protecting CDC and NIH funding to extending telehealth flexibilities and hospital-at-home programs, the bill also takes historic steps to reform Pharmacy Benefit Managers (PBMs), aiming to make drug pricing more transparent and patient-centered. Steven walks through what’s in the legislation, what was left out, and why PBM reform could have a direct impact on out-of-pocket costs and medication access.
Plus, what this deal signals about the power of patient advocacy in shaping policy—even in a divided political climate.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, Steven Newmark speaks with Ohio State Representative Michele Grim, the only public health professional currently serving in the Ohio legislature. Rep. Grim shares how her background in public health advocacy led her to politics, where she now champions legislation to expand access to care, fight misinformation, and protect vulnerable populations.
Together, they dive into the challenges of health policy in today’s polarized environment, and the importance of having voices at the table who understand the system from the inside out.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, we break down one of the most pivotal and controversial ACIP meetings in recent history. The CDC’s vaccine advisory committee voted to roll back the universal hepatitis B birth dose, a policy that has protected newborns from chronic liver disease for more than three decades. We explain what ACIP decided, why the changes were not based on new scientific evidence, and how misinformation and ideological viewpoints shaped the discussion.
We also explore the real-world consequences for families, clinicians, and health systems. From confusing new recommendations to unnecessary blood tests to disruptions in the overall childhood immunization schedule, these changes will make it harder for parents to access safe, routine preventive care. But the meeting also revealed something hopeful: strong advocacy — from medical societies, public health experts, grassroots organizers, and patient groups — helped prevent even more extreme proposals from becoming policy.
Finally, we discuss what comes next as ACIP reviews additional childhood vaccines and how advocates, clinicians, and community members can stay engaged to protect science-based immunization policy.
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special year-end episode of The Health Advocates, host Steven Newmark takes a step back to review several of the most significant public health developments of 2025.
The episode covers major leadership changes at the U.S. Department of Health and Human Services, key meetings and votes of the Advisory Committee on Immunization Practices (ACIP), ongoing challenges related to vaccine access and uptake, and continued debates over prescription drug pricing, including “Trump Rx.” Steven also examines the rapid expansion of GLP-1 medications, the implementation of Inflation Reduction Act health provisions, public health workforce pressures, infectious disease monitoring beyond COVID-19, maternal health initiatives, and the evolving role of data and communication in public health.
Rather than an opinion piece, this episode offers a straightforward recap of how policy decisions, advisory processes, and healthcare system dynamics shaped public health in 2025 and set the stage for the year ahead.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, we break down one of the most pivotal and controversial ACIP meetings in recent history. The CDC’s vaccine advisory committee voted to roll back the universal hepatitis B birth dose — a policy that has protected newborns from chronic liver disease for more than three decades. We explain what ACIP decided, why the changes were not based on new scientific evidence, and how misinformation and ideological viewpoints shaped the discussion.
We also explore the real-world consequences for families, clinicians, and health systems. From confusing new recommendations to unnecessary blood tests to disruptions in the overall childhood immunization schedule, these changes will make it harder for parents to access safe, routine preventive care. But the meeting also revealed something hopeful: strong advocacy — from medical societies, public health experts, grassroots organizers, and patient groups — helped prevent even more extreme proposals from becoming policy.
Finally, we discuss what comes next as ACIP reviews additional childhood vaccines and how advocates, clinicians, and community members can stay engaged to protect science-based immunization policy.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
How can lawmakers rebuild public trust in health, and make prevention a shared priority?
In this episode of The Health Advocates, Steven Newmark speaks with Texas State Representative Nicole Collier, a leading voice on health equity, women’s health, and preventive care. From her work on the Select Committee on Preventable Diseases and Women’s Health to her advocacy for fair access to vaccines, Rep. Collier brings a clear message: prevention isn’t political, it’s essential.
Together, Steven and Rep. Collier explore:
- How preventive care, including vaccines, strengthens community trust
- Why health equity starts with access to reliable information and local leadership
- How Texas can serve as a model for bipartisan public-health collaboration
To learn more about vaccine recommendations and find reliable resources for patients, visit: ghlf.org/vaccines
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special Thanksgiving episode, Steven helps our community prepare for the conversations that matter most. Every year, GHLF shares its “Turkey Day Talking Points” to support people living with chronic illness or who are immunocompromised as they navigate discussions about vaccines with family and friends.
This episode breaks down simple, compassionate ways to explain why vaccines are so important, and why protection for immunocompromised people relies not only on their own shots, but also on the vaccination decisions of those around them. Steven emphasizes that for many patients, vaccines aren’t political; they’re personal. They’re about staying healthy enough to participate in holidays, gatherings and everyday life.
Whether you're looking for language to make yourself heard without sparking conflict, or you want to help loved ones understand what vaccine protection really means for you, this episode offers guidance rooted in empathy, clarity and lived experience.
To learn more about vaccine recommendations and find reliable resources for patients, visit: ghlf.org/vaccines
Contact Our HostSteven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, host Steven Newmark breaks down what the recent federal government shutdown means for health care access and vulnerable patients. Then, he’s joined by Mahsa Pazokifard, a passionate patient advocate living with IgG4-related disease (IgG4-RD), a rare and often misunderstood autoimmune condition. Mahsa opens up about the challenges of getting diagnosed, how the disease has impacted her life and career, and why raising awareness is essential.
Whether you’ve never heard of IgG4-RD or are living with a chronic illness yourself, this episode offers powerful insights into patient advocacy, rare disease awareness, and the human side of health care policy.
To learn more about IgG4-Related Disease, visit: creakyjoints.org/igg4-rd-guide
To learn more about vaccine recommendations and find reliable resources for patients, visit: ghlf.org/vaccines
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Pandemics aren’t only about pathogens, they’re about people, politics, and the deep inequities in our health systems. In this episode of The Health Advocates, Steven Newmark speaks with Dr. Tyler Evans, an infectious disease and public health leader whose career has spanned the front lines of global outbreaks from Ebola to COVID-19. As the former Chief Medical Officer for New York City and co-founder of the Wellness and Equity Alliance, Dr. Evans brings firsthand insight into how societal structures can shape, and sometimes worsen, the course of a public health crisis.
The conversation dives into key themes from Dr. Evans’ new book, Pandemics, Poverty, and Politics (Johns Hopkins Press, August 2025), which examines how inequality, poverty, and fractured health systems accelerate the spread of disease. Dr. Evans explains why scientific breakthroughs alone aren’t enough, we must also tackle the injustices that leave vulnerable communities at greatest risk.
From vaccine mandates to climate change’s role in infectious disease, from disinformation to the erosion of public trust, this episode offers both a sobering reality check and a call to action. Whether you’re a healthcare professional, policymaker, or concerned citizen, you’ll come away with a deeper understanding of why true pandemic preparedness starts with equity.
To learn more about Dr. Tyler Evans’ book, Pandemics, Poverty, and Politics, click here.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Open enrollment for 2026 is underway — and for millions of Americans managing chronic or rare diseases, understanding your health insurance options is essential. In this episode of The Health Advocates, Steven Newmark breaks down what open enrollment is, what’s new this year, and how to navigate changes in your plan.
Drawing from Aimed Alliance’s 2026 Open Enrollment guide, Steven explains key terms like deductibles and out-of-pocket limits, explores what to watch for in your plan’s formulary, and outlines the impact of potential changes to ACA subsidies. Whether you’re reviewing employer coverage or shopping through HealthCare.gov, this episode will help you make informed, patient-centered choices for the year ahead.
Listen and learn:
- What to look for in your 2026 plan
- How to protect your access to medications and providers
- Why ACA subsidies and transparency rules matter for affordability
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special episode of The Health Advocates, Steven Newmark speaks with Kathi Lopez, who shares her journey of being diagnosed with Giant Cell Arteritis (GCA). Kathi talks about the challenges of getting a proper diagnosis, navigating treatment, and managing life with a rare autoimmune condition. She shares how staying informed, connected, and engaged in advocacy has helped her take control of her care, and how she now helps others do the same. Her story sheds light on the realities of living with GCA and the importance of raising awareness for rare conditions.
Tune in to hear Kathi’s inspiring story and help us raise awareness for GCA.
To learn more about Giant Cell Arteritis, visit https://ghlf.org/gca
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
The 2025 Nobel Prize in Physiology or Medicine recognized groundbreaking advances in understanding immune regulation — but what do they mean for people living with autoimmune disease? In this episode, Dr. Shilpa Venkatachalam, Chief Patient-Centered Research and Ethical Oversight Officer at GHLF, joins Steven to explore how our immune system knows when to act — and when to stop. Shilpa explains the importance of these discoveries, why immune “brakes” matter in autoimmune conditions like lupus or rheumatoid arthritis, and how research breakthroughs can lead to better treatments. She also shares why patients are key partners in turning lab science into real-world therapies.
Tune in to learn how Nobel-winning science could help unlock better care for autoimmune disease.
To read the full article — “How a Nobel Prize Discovery Gives New Hope for Calming the Immune System in Autoimmune Diseases” — visit: https://creakyjoints.org/research/research-immune-nobel-prize-autoimmune/
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
What happens to America’s health when Washington grinds to a halt? In this episode of The Health Advocates, we break down the latest federal government shutdown and what it means for public health agencies across the country. We explain what a shutdown actually is, drawing from past shutdowns over the last 30 years, and then dive into the immediate and long-term impacts on the CDC, FDA, NIH, and other agencies that millions of people depend on for research, vaccines, food safety, and emergency response.
We also look at the political stalemate behind the shutdown, focusing on Democrats’ push to restore pending cuts to Affordable Care Act subsidies and what those cuts could mean for healthcare costs. Finally, we explore whether there’s a realistic path to resolution soon—and what’s at stake for patients and the healthcare system if Congress fails to act.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, Steven Newmark sits down with Richard (RJ) Kedziora, co-founder of Estenda Solutions, to explore the intersection of technology, data, and patient advocacy. With decades of experience in healthcare technology, RJ shares how he and his team design digital tools that help patients take control of their health while supporting providers and payers alike. They also discuss patient engagement, accessibility, and the future of artificial intelligence in healthcare. Whether you're a tech enthusiast, a healthcare professional, or a patient advocate, this conversation offers insights on building smarter, more empathetic digital health solutions.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
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In this episode of The Health Advocates, we unpack a turbulent week in public health. The CDC’s Vaccine Advisory Committee (ACIP), now reshaped under Health Secretary Robert F. Kennedy Jr., met to debate changes to the COVID-19, MMRV, and Hepatitis B vaccine recommendations. Despite heated rhetoric and process irregularities, the committee ultimately kept broad access to COVID-19 vaccines — a short-term win for patients and a reminder that advocacy pressure works.
We also break down President Trump’s recent claims linking Tylenol use during pregnancy to autism, and his renewed suggestion of a connection between vaccines and autism. We review what the science actually shows, what public health experts are warning about, and what patients and families should know moving forward.
Tune in for clarity on a confusing week — and why these debates matter for access, trust, and the future of public health.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
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This fall’s Covid-19 vaccine rollout is more confusing than ever. The FDA has narrowed eligibility to older adults and people with high-risk conditions, while major medical societies are urging broader access — and insurance companies are waiting for new guidance from ACIP, the advisory committee that’s been reshaped by RFK Jr.
In this episode of The Health Advocates, host Steven Newmark explains who qualifies as high-risk, what “off-label” vaccination means, how coverage is likely to work, and what parents, pregnant people, and adults should know heading into the fall season.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
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In this special episode of The Health Advocates, we take a closer look at Polymyalgia Rheumatica (PMR), a condition that affects tens of thousands of older adults each year in the U.S. but is often misunderstood. Host Steven Newmark is joined by GHLF’s Angela Degrassi, patient advocate Eileen Salsman, and two leading experts — Dr. Leonard Calabrese and Dr. Jeffrey Curtis — to unpack what PMR is, how it impacts daily life, and why a patient-centered approach to research and care is so important. Together, they explore symptoms, diagnosis, steroid treatment challenges, and emerging insights from new research and lived experience.
Special note: We invite you to a live webinar on Polymyalgia Rheumatica (PMR) that will explore critical gaps in diagnosis and disease monitoring.
Date: Thursday, September 18th
Time: 6:30 PM Eastern
Location: Live on YouTube
To register, visit: https://www.research.net/r/RKW2FHZ
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
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CDC Director Susan Monarez has been fired after less than one month on the job, sparking a wave of resignations by senior leaders and raising alarms about the politicization of public health. In this episode of The Health Advocates, host Steven Newmark unpacks what happened, why it matters, and what the loss of experienced leadership means for patients and communities. From vaccines to emergency preparedness, the future of the CDC — and public trust in science — is on the line.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
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A leaked draft of the Trump administration’s Make Our Children Healthy Again plan reveals a strategy to improve kids’ health that’s far less sweeping than many expected. Instead of bold action on processed foods and pesticides, the draft emphasizes “awareness” campaigns and industry-friendly guidelines, while reopening old battles over vaccines, fluoride, and even WiFi.
In this episode of The Health Advocates, Steven unpacks what’s actually in the leaked report, what’s missing, and why these proposals could reshape public health for children across the country. From school nutrition to pesticide regulation to vaccine safety, we break down what the draft means for families, industry, and the future of U.S. health policy.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
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In this episode, Steven is joined by Dr. Zameer Pirani, an interventional pain specialist and co-founder of the Afiya Spine and Pain Institute in Canada. Dr. Pirani shares his path to pain medicine, from early training in Ireland to his experiences with anesthesia and chronic pain fellowships. He discusses how the opioid crisis, gaps in the health care system, and the stigma surrounding pain patients shaped his career and passion for multidisciplinary, patient-centered care. Dr. Pirani also shares his insights on the challenges of treating invisible illnesses, building trust with patients, and why true healing requires listening, empathy, and a team-based approach.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
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In this episode, host Steven Newmark breaks down four critical public health stories making headlines:
- Senators Angus King and Elizabeth Warren introduce a resolution to defend the U.S. Preventive Services Task Force amid reports that RFK Jr. may fire its members.
- What’s really at stake if the Task Force is dismantled—and how evidence-based guidelines are already saving lives, from colon cancer screenings to heart health.
- A deadly outbreak of Legionnaires’ disease in Harlem has claimed two lives and sickened dozens. What you need to know if you live in the area.
- The alarming defunding of mRNA vaccine research.
Science, policy, and prevention—all in one sharp, timely episode.
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, Steven Newmark, Chief of Policy at GHLF, is joined by Clayton Ruley, Director of Strategic Initiatives, Mission Advancement & Impact at the Community Liver Alliance. Clayton shares his decades-long journey from frontline harm reduction work to shaping national health policy. Together, they discuss the need for compassion in healthcare, the importance of patient-centered policymaking, and the urgent challenges facing programs like 340B and Medicaid. Clayton also highlights how community-level work and federal health policies intersect — and why transparency and access matter now more than ever.
Among the highlights in this episode:
01:04: Clayton describes his background and early career, influenced by a family of social workers and his work in harm reduction clinics
04:04: Clayton explains what policymakers often miss: the need for options, compassion, and respect in patient care, especially for people facing stigma or systemic barriers
07:05: Clayton outlines the mission of the Community Liver Alliance and his evolving role in expanding national and global impact
09:56: Clayton discusses the top policy priorities for the Community Liver Alliance, including improving transparency and accountability in the 340B program
14:30: Clayton gives real-life examples of how 340B funding can transform communities through housing, outreach, and treatment access
15:55: Clayton and Steven discuss the harms of non-medical switching and the need to protect patient stability in treatment
16:52: They highlight concerns about potential Medicaid and Medicare cuts and the downstream impact on underserved communities
17:22: Steven reminds listeners of the delayed consequences of the Build Back Better bill, with millions projected to lose Medicaid access by 2027
18:54: Clayton warns that rising premiums could force patients to forgo insurance entirely — a dangerous outcome for people with chronic diseases
To learn more about the Community Liver Alliance or support their advocacy efforts, visit: https://communityliveralliance.org/
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
What exactly are reconciliation and rescission—and why do they matter for your health? In this episode, Steven Newmark, Chief Policy Officer at GHLF, demystifies two powerful — and often misunderstood — budget tools: reconciliation and rescission. What do they mean? How do they bypass the normal budget process? And why do they matter for healthcare, public programs, and patients?
Steven breaks down the differences between these mechanisms, explains where they fit into the broader federal budget process, and examines Congress’s recent $9.4 billion rescission vote. If you care about how Congress funds — or defunds — healthcare, this episode will give you the clarity you need.
Tune in to learn:
- What reconciliation really is, and how it’s used to pass major healthcare policy
- Why rescission gives presidents the power to cancel already-approved spending
- How these tools operate outside the regular appropriations process
- What the latest moves in Congress mean for public health funding in 2025
Among the highlights in this episode:
01:15: Steven explains how budget reconciliation works, including its origins in the 1974 Congressional Budget and Impoundment Control Act
01:57: Steven breaks down why reconciliation is such a powerful tool: it allows bills to pass with a simple majority in the Senate
02:19: Steven introduces rescission, the process for canceling already approved spending, and details President Trump’s recent $9.4 billion rescission request
03:34: Steven discusses the impact of reconciliation and rescission on health care, including potential threats to Medicaid, Medicare, and public health programs
04:32: Steven warns that the use of rescission discourages bipartisan negotiation and risks undermining trust in the budget process
05:23: Steven urges listeners to stay informed, as funding for essential programs could quietly disappear without public scrutiny
05:35: Steven zooms out to explain how reconciliation and rescission fit within the larger federal budget process
06:49: Steven concludes by emphasizing the need for Congress to follow regular order and for advocates to understand budget mechanisms to be effective
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Listen to all episodes of The Health Advocates on our website (https://ghlf.org/the-health-advocates) or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, Steven Newmark takes a deep dive into the high-stakes lawsuit against Health Secretary Robert F. Kennedy Jr. Six major medical organizations, and a pregnant physician are challenging Kennedy’s directive to remove COVID-19 vaccine recommendations for children and pregnant people — and they’re asking the courts to intervene. Steven unpacks the legal arguments, explains key concepts like standing and injunctions, and explores what’s at risk for public health, the rule of law, and the integrity of vaccine policy in the U.S.
Among the highlights in this episode:
00:24: Steven introduces a major legal battle against HHS Secretary Robert F. Kennedy Jr., who removed COVID-19 vaccine recommendations for children and pregnant people
00:53: Overview of the lawsuit filed by top medical organizations and a pregnant physician in Massachusetts
01:27: Steven explains how Kennedy bypassed the Advisory Committee on Immunization Practices (ACIP) and why that matters
03:02: What the Administrative Procedure Act (APA) is and why the plaintiffs argue Kennedy violated it
03:17: The importance of legal standing: How the plaintiffs demonstrate direct harm from the directive
04:11: Steven describes how the directive undermines doctors’ ability to provide evidence-based care and increases patient confusion
05:17: Public health implications: vaccine confidence, potential erosion of trust, and the danger of political interference in scientific guidance
06:09: Steven wraps up with the legal stakes and what this case could mean for future public health policymaking
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this week’s episode of The Health Advocates, host Steven Newmark unpacks a whirlwind of health news that could reshape the foundation of U.S. public health. From a major lawsuit against HHS Secretary Robert F. Kennedy Jr. to record-high measles cases and the quiet cancelation of a critical preventive care meeting, Steven explains what’s at stake. Plus, he shares a hopeful update on bird flu and the importance of defending science-based health policy amid political disruption.
Among the highlights in this episode:
00:56: Steven explains the lawsuit against HHS Secretary RFK Jr. for bypassing CDC and ACIP (Advisory Committee on Immunization Practices) input in changing COVID-19 vaccine guidance
01:33: Steven emphasizes how sidelining scientific advisors erodes public health trust and transparency
02:02: Measles cases hit a 30-year high; Steven explores how vaccine hesitancy has contributed to this preventable public health failure
02:47: Steven discusses how vaccine misinformation puts vulnerable groups like children and immunocompromised people at risk
03:06: Steven shares encouraging news: the CDC has ended its emergency response to the bird flu outbreak due to declining animal infections
03:36: Steven explains how a well-functioning public health system should respond to outbreaks like H5N1
04:11: A last-minute cancellation of the U.S. Preventive Services Task Force meeting raises concerns about potential political interference
04:37: Steven connects this move to a recent Supreme Court ruling that allows the HHS Secretary to replace members of this influential panel
04:47: Steven warns that this could lead to fewer no-cost preventive services covered by insurance under the ACA
05:12: Steven announces the new season of Let’s Get Personal, which focuses on rheumatoid factor levels in RA. Tune in to the new episodes and explore our related resources at: https://creakyjoints.org/lets-get-personal/
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, Steven Newmark breaks down two urgent public health threats: a Senate proposal that would deeply cut Medicaid funding and an extreme heat wave affecting more than 265 million Americans. Steven explains how the Senate bill could gut essential health services for millions, all to fund tax cuts—and how this could impact everyone, not just Medicaid enrollees. He then turns to the record-breaking heat, sharing crucial safety tips and resources. Finally, Steven discusses a new COVID-19 variant known for its painful “razor blade throat” symptom.
Tune in to stay informed and take action.
Among the highlights in this episode:
01:15: Steven outlines the Senate bill’s key provisions, including stricter work requirements, caps on funding, and efforts to undermine state Medicaid expansions
02:30: Steven explains the motivation behind the cuts: funding extensions for Trump-era tax breaks and limiting government support
03:13: Why Medicaid is more efficient than private insurance and how the cuts could increase mortality and reduce care access
04:29: A real-world example of how the cuts could harm families caring for medically complex children
05:29: Steven warns that the broader fallout will impact hospitals, insurance premiums, ER costs, and jobs—even for people not on Medicaid
06:03: How to take action: call your Senator, share your Medicaid story, and put public pressure on policymakers
06:18: Steven discusses the brutal U.S. heat wave: who is at risk and why early-season heat can be especially dangerous
07:48: Key symptoms of heat-related illness and advice for hydration, using cooling centers, and checking on vulnerable people
To learn more about NOAA’s new tool, visit: NWS HeatRisk at https://www.wpc.ncep.noaa.gov/heatrisk/
08:47: Introduction of the new COVID-19 variant, NB.1.8.1, known for causing a severe sore throat—“razor blade throat”
09:55: Final reminders: stay up to date on vaccines, and be vigilant if you get sick
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
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In this episode of The Health Advocates, Steven Newmark sits down with Jon Erlichman — founder of Ticker Take and a well-known financial journalist whose videos have reached nearly a billion views across platforms including YouTube, TikTok, Instagram and X. Jon shares his personal journey of living with Crohn’s disease and what inspired him to open up about it publicly. He also talks about the importance of family support, how he manages daily life in the spotlight, and why he’s optimistic about the future of IBD research and care.
Tune in for an inspiring conversation about resilience, advocacy, and the power of sharing your story.
Among the highlights in this episode:
00:58: Jon Erlichman describes his initial Crohn’s diagnosis while working at Bloomberg in NYC and managing new parenthood at the same time
04:29: Jon recalls the whirlwind of juggling work, a newborn, and worsening health symptoms before being properly diagnosed
06:34: Steven asks Jon about deciding to share his condition publicly despite having a highly visible career
06:48: Jon explains how family encouragement and growing confidence led him to speak up — and how going public lifted a weight and connected him with community support
10:12: Jon opens up about managing Crohn’s daily as a journalist: planning around TV schedules, live events, and knowing “where every bathroom is”
12:38: Jon shares advice for others who want to talk more openly about chronic illness: the reward of community and the mental health benefits of being vulnerable
14:21: Jon reflects on his family’s support and how caregiving and family impact are vital parts of any chronic illness story
16:45: Jon and Steven close with optimism for the future of IBD research and improved treatments, and gratitude for patient advocacy communities
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this week’s special episode of The Health Advocates, Steven Newmark breaks down a major and alarming development in U.S. public health policy: the removal of all 17 members of the Advisory Committee on Immunization Practices (ACIP) by HHS Secretary Robert F. Kennedy Jr. Steven explains what ACIP does, why its role is crucial to vaccine access and confidence, and how this sudden and sweeping dismissal could erode trust, limit insurance coverage, and leave vulnerable populations at risk.
Tune in to learn what’s at stake, why it matters for people living with chronic illness, and how patients can raise their voices in support of science-based policy.
Among the highlights in this episode:
00:46: Steven explains what ACIP is, what it does, and how it supports CDC vaccine policy
01:45: Steven outlines the importance of ACIP recommendations for real-world vaccine access and insurance coverage
02:05: Steven details RFK Jr.’s justification for the ACIP purge and why it is cause for concern
02:48: Steven warns of the dangerous consequences: loss of expertise, misinformation, and reduced access for patients
03:33: Steven highlights the risks for immunocompromised patients and families with children
04:30: Steven encourages patient action; contact Congress, speak to your doctor, and stay informed
05:08: Steven urges listeners to submit comments for the upcoming ACIP meeting and shares how GHLF will be responding
You can submit comments online for the Committee at regulations.gov
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
This week on The Health Advocates, Steven Newmark, Chief of Policy at GHLF, breaks down two major stories: sweeping proposed cuts to key federal health agencies in the 2026 U.S. budget, and a new national partnership between GHLF and Walgreens aimed at improving care for chronic skin conditions. Steven explains what’s at stake, how advocacy can influence policy decisions, and why pharmacists are essential allies in supporting skin health.
Among the highlights in this episode:
00:34: Steven breaks down the proposed 26% cut to the U.S. Department of Health and Human Services, including a 40% cut to NIH and 44% to CDC
01:00: Steven explains the impact of these cuts on medical research, vaccine surveillance, and chronic disease care
01:56: Steven discusses how Indian Health Services and HRSA programs would also be severely reduced, putting vulnerable populations at further risk
02:43: Steven emphasizes that this is a proposed budget and not a done deal—public advocacy still has power
03:10: Steven urges listeners to contact their members of Congress and help make budget policy personal for patients
03:40: The episode pivots to good news: GHLF’s new campaign with Walgreens: Your Skin, Your Health: How Pharmacists Help You Take Control
To watch the videos from the campaign and explore more resources from GHLF and Walgreens, visit: https://linktr.ee/YourSkinYourHealth
03:58: Steven introduces the campaign’s focus on empowering patients with HS, psoriasis, atopic dermatitis, and alopecia through pharmacist guidance
04:28: Steven explains why pharmacists are ideal allies in chronic skin care—offering support from symptom recognition to navigating insurance
05:01: Steven outlines how the campaign will reach millions across GHLF and Walgreens channels, with weekly videos and actionable resources
05:40: He reflects on why this campaign matters: for many patients, it provides long-overdue validation and support from trusted professionals
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
The FDA just made a surprising move that could reshape COVID-19 vaccination in the U.S. going forward, and the House passed a major budget bill with proposed cuts to Medicaid. In this episode of The Health Advocates, Steven Newmark breaks down the changes, debates, and potential impacts on people living with chronic conditions.
Tune in to understand what these updates mean and what steps advocates can take to make their voices heard.
Among the highlights in this episode:
00:08: Steven Newmark, Chief of Policy at GHLF, opens the episode by introducing two major health policy developments: the FDA’s shift in COVID-19 vaccine recommendations and the House’s proposed changes to Medicaid
00:50: Steven explains the new FDA policy: COVID-19 vaccines will now only be recommended for adults 65+ or those with at least one chronic condition
01:27: He breaks down the reasoning behind the FDA’s decision, including population-level immunity and a desire for stricter trial standards for boosters
02:38: Steven details critics’ concerns about the lack of transparency and the ethical issues surrounding placebo-controlled vaccine trials
04:10: He highlights the risk that this decision could undermine CDC efforts and lead to public confusion or lower vaccine uptake
04:52: Steven shifts to the second major story: the House’s fiscal year 2026 budget resolution, which includes dramatic proposed cuts to Medicaid
05:13: He outlines three major proposed changes: capped federal funding, work requirements for Medicaid, and restrictions on Medicaid expansion
05:58: Steven emphasizes who this could affect—over 80 million people, including those with chronic conditions, disabilities, or long COVID
06:23: He encourages listeners to take action by contacting their senators and participating in public hearings, reminding them that advocacy matters
Join GHLF’s 50 State Network, share your story, and get involved in advocacy to make a difference, email us at advocacy@ghlf.org
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
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In this episode of The Health Advocates, Steven Newmark is joined by Rob Long, Executive Director of Uplifting Athletes. Rob shares his journey from All-American punter at Syracuse University to rare brain cancer survivor and patient advocate. Diagnosed during his senior season, Rob’s football career was cut short, but his passion for teamwork and purpose found new life in advocacy. Through his leadership at Uplifting Athletes, Rob helps amplify rare disease awareness, fund groundbreaking research, and connect patients to uplifting experiences across the country.
Join us for a conversation about resilience, purpose, and how sports can unite and empower the rare disease community.
Among the highlights in this episode:
02:25: Rob shares how he started playing football, got recruited by Syracuse, and committed after being offered a full scholarship
04:05: Rob describes the symptoms leading up to his diagnosis and the moment he learned he had a large brain tumor
06:30: Rob recalls undergoing emergency surgery and being told he likely wouldn’t live more than 36 months — a moment that shifted his entire life’s trajectory
07:45: Rob explains how seeing his teammates at an important game post-surgery gave him the sense of normalcy and emotional support he desperately needed
09:24: Rob offers advice to friends and families supporting loved ones through serious illness: show up, and stay consistent
10:33: Rob shares how his teammates started the Syracuse chapter of Uplifting Athletes in his honor and how that led him to join the organization
12:42: Rob discusses connecting with patients around the country and the shared experience of living with a rare disease
14:21: Rob explains how people can support Uplifting Athletes by donating, liking and sharing content, and helping increase visibility for the rare disease community
To learn more about Uplifting Athletes go to: www.upliftingathletes.org
15:34: Steven wraps the episode by reflecting on the inspiration of his story and continued advocacy
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, Steven Newmark breaks down the potential $880 billion in cuts to Medicaid currently under debate in Congress. Steven walks through what’s at stake, who could be affected, and why this moment matters. He explains the proposed changes to work requirements, federal matching cuts, and Medicaid expansion support — and outlines what patients, caregivers, and advocates can do to stay protected and make their voices heard.
Tune in to better understand the real-life impact of these proposed cuts and how you can take action.
Among the highlights in this episode:
00:32: Steven explains what Medicaid is, who it covers, and why it’s the largest insurer in the country
01:18: Steven outlines the proposed $880 billion in budget cuts over 10 years and what that means in context
02:12: Steven discusses the potential reduction in federal matching funds and its consequences for states
03:00: Steven highlights who would be most affected by cuts: low-income families, seniors, people with disabilities, and those with chronic illnesses
03:35: Steven explores the ripple effects of cuts, from delayed care to increased provider strain
04:05: Steven offers a look at the legislative timeline: proposals are expected over spring and summer, with votes likely in fall
04:28: Steven provides actionable tips for listeners
05:20: Steven closes with a reminder that Medicaid is more than a budget issue — it’s a health lifeline for millions
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
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In this episode of The Health Advocates, Steven Newmark breaks down the latest public health developments you need to know. From a surge in measles and dengue cases to proposed changes in food dye regulations, Steven explains what’s happening, why it matters, and how it could impact people living with chronic illness. He also unpacks the delay in FDA approval for the Novavax COVID-19 vaccine and introduces the Vaccine Integrity Project — a new initiative working to preserve trust in vaccine guidance.
Tune in for the insights you need to stay informed and protect your health.
Among the highlights in this episode:
00:40: Steven Newmark, Chief of Policy at GHLF, reports that U.S. measles cases are surging, nearing a 25-year high with 923 cases, including a hotspot in El Paso, TX
01:22: Steven notes a political divide in public concern over measles, citing Kaiser Family Foundation survey data
01:40: Dengue fever cases are rising in the U.S. due to travel and climate shifts; Steven urges use of DEET-based repellents in high-risk states
02:24: Steven breaks down HHS’s proposed voluntary phaseout of certain petroleum-based food dyes, highlighting industry pushback and potential allergy risks
03:38: Steven explains the FDA’s pause and policy change regarding full approval for the Novavax COVID-19 vaccine, including a new clinical trial requirement
04:33: Steven introduces the Vaccine Integrity Project, a private group of vaccine experts formed to provide trusted guidance amid concerns of policy politicization
05:43: Steven wraps up with a reminder to visit https://ghlf.org/vaccine-resources for ongoing updates and resources on vaccine
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, we’re joined by Cristina Montoya, a registered dietitian, advocate, and patient living with both rheumatoid arthritis and Sjögren’s disease. Cristina shares her diagnosis journey, the challenges of managing symptoms from childhood to adulthood, and how she uses her lived experience to guide others through nutrition and advocacy. We also hear from Erik Stone, Director of Data, Learning, and Evaluation at GHLF, who breaks down insights from a recent GHLF survey of people living with Sjögren’s. Together, they highlight the need for better education, tailored treatments, and more support for the Sjögren’s community.
Among the highlights in this episode:
00:54: Cristina Montoya introduces herself, her background as a dietitian, and her personal experience living with rheumatoid arthritis and Sjögren’s
01:39: Cristina explains how to pronounce “Sjögren’s” and offers a clear overview of what the disease is and how it progresses
04:04: Cristina shares her childhood experience with undiagnosed symptoms of Sjögren’s, including dry eyes, parotid swelling, fatigue, and difficulty swallowing
07:49: Steven asks about dietary considerations; Cristina explains how Sjögren’s affects the entire digestive tract and why food texture matters
10:25: Cristina offers ideas for eating leafy greens like kale and how smoothies can be adapted to reduce GI discomfort
13:23: Cristina shares what inspired her to become an advocate, describing herself as an “accidental advocate” who became active after attending her first patient conference in Canada
15:08: Cristina addresses common misconceptions, including that Sjögren’s is “just a dry mouth disease” and not disabling
17:38: Erik Stone joins the conversation to share GHLF’s survey findings: 84% of respondents want help managing symptoms and flares
There’s still time to share your feedback — take our short survey here: https://us8.list-manage.com/survey?u=9d2bc7b86ce2e776e067d6fbc&id=92f785a222&attribution=false
20:24: Cristina reacts to the data and underscores the variability and impact of flares, especially for those without a co-occurring autoimmune condition
22:27: Cristina outlines the biggest needs in the Sjögren’s community: targeted treatments and improved management of fatigue, pain, dryness, and neuropathy
23:31: Cristina and Erik discuss who bears responsibility for education and call for better understanding at the medical school level
Below are additional resources mentioned by Cristina during the episode:
Sjogren's Advocate by Dr. Schafer: https://www.sjogrensadvocate.com/
The American College of Rheumatology, Sjogren’s Disease Experts, and Medical Educators Need to Step Up: https://bexiphd.com/blogs/news/the-american-college-of-rheumatology-sjogren-s-disease-experts-and-medical-educators-need-to-step-up
Sjögren's Recognized as a Disease, What's Next for Patients and Research?: https://www.arthritisdietitian.com/post/sjogren-s-disease-what-s-next-for-patients-and-research
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, we’re joined by Gaile Valcho, founder and president of the Brady Valcho Autism Foundation. Gaile shares her powerful story as the mother of a child with autism and her journey to address a gap in community resources in Holly Springs, North Carolina. She opens up about the challenges and triumphs of caregiving while living with lupus, the importance of community support, and her foundation’s work to build inclusive, joyful spaces for neurodiverse families.
Tune in for a conversation about resilience, empathy, and the everyday ways we can show up for one another.
Among the highlights in this episode:
01:30: Gaile shares how a lack of local autism resources motivated her to create the Holly Springs Autism Acceptance Day event
05:07: Zoe and Gaile discuss the emotional impact and validation of community showing up to support the event
06:01: Gaile explains how other families found crucial resources and joy through the event
08:00: Zoe highlights the importance of community support when navigating chronic conditions
10:23: Gaile describes how her lupus diagnosis intersected with caregiving for her son and changed her daily life
14:35: Gaile shares how treatments have helped manage her lupus and how her son Brady supports her
15:37: Gaile discusses the Spoon Theory and how it helps her communicate about energy and limits
19:53: For more information about the Brady Valcho Autism Foundation visit: https://bva.foundation/
20:27: Tune in to our Clinical Trials Talks podcast, visit https://creakyjoints.org/clinical-trials
Whether you’re ready to see if you qualify for a lupus clinical study, have questions about safety, benefits, and preparation, or simply want to hear real stories from other lupus patients, caregivers, and trusted providers who’ve been through it, visit https://creakyjoints.org/lupus-help-center/
21:41: Zoe reflects on her time with the podcast and thanks Steven and listeners
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, Steven breaks down a tumultuous week in public health and healthcare policy — from a growing trade war with China and its potential impact on medical imports, to the elimination of a vital pain research office at the National Institutes of Health (NIH). He also unpacks the mixed messaging from HHS Secretary RFK Jr. on vaccines, including unchecked claims about measles treatments.
Tune in for a timely and important public health update.
Among the highlights in this episode:
00:57: Steven unpacks the wave of new tariffs, and how they might impact healthcare costs and access
04:14: Steven explains the implications for patients if pharmaceutical products and medical devices face future tariffs
06:45: Steven discusses the shutdown of the NIH’s Office of Pain Policy and Planning, and how it could stall research and support for people living with chronic pain
08:23: Steven addresses RFK Jr.'s shifting statements on vaccines in response to a second measles-related death in Texas
09:12: Steven raises concern over RFK Jr.’s promotion of unproven treatments for measles, including cod liver oil and vitamin A
10:25: Steven explains why these alternative therapies can be harmful and misleading, especially when used instead of scientifically validated treatments
11:42: Steven gives a shout-out to GHLF’s Healthcare Matters podcast episode featuring former FDA Commissioner Peter Pitts, exploring deeper implications of agency cuts. You can listen to the full episode here: https://ghlf.org/healthcarematters/#episode55
12:10: Steven announces the launch of the new Lupus Help Center at www.lupushelpcenter.org — a go-to resource for people living with lupus
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
It’s been a whirlwind week in public health. In this episode, host Steven Newmark breaks down a string of major developments coming out of the U.S. Department of Health and Human Services (HHS). From mass layoffs across HHS, including at the FDA, to the resignation of the country’s top vaccine regulator, these changes raise serious concerns—especially amid a rising measles outbreak.
Tune in to hear what this means for patients, public health efforts, and the fight against vaccine hesitancy.
Among the highlights in this episode:
00:50: Steven Newmark, Chief of Policy at GHLF, discusses HHS Secretary Robert F. Kennedy Jr.’s announcement of 10,000 staff layoffs, with the Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC) being the most impacted
01:31: Steven reflects on RFK Jr.'s earlier warning to FDA workers to "pack their bags" and discusses concerns about maintaining service levels with a 25% workforce cut
02:08: Quoting Robert Califf, Steven shares the demoralization felt by former and current HHS staff, calling out the treatment of hardworking public health employees
02:38: Steven shares concerns from Chiquita Brooks-LaSure, former Centers for Medicare & Medicaid Services (CMS) head, particularly around the likely impact of layoffs on already underfunded nursing home inspections
03:20: Steven reports the forced resignation of Dr. Peter Marks, the FDA’s top vaccine regulator, and the alarming response from the public health community
04:06: Steven details Dr. Marks’ warnings about leadership skepticism toward vaccines, especially in light of the growing measles outbreak
04:34: Steven gives an update on the measles outbreak in Texas and other states, citing more than 500 cases nationwide and highlighting RFK Jr.'s unscientific treatment suggestions like vitamin A and cod liver oil
05:16: Steven discusses how HHS cuts are hampering efforts to track infectious diseases and fund vaccine research, even as the outbreak fuels a shift toward pro-vaccine sentiment in affected areas
05:49: Steven urges listeners to get vaccinated and ensure those around them—especially children—are protected with the Measles, Mumps, and Rubella (MMR) vaccine
Contact Our Host
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, our hosts break down the latest health care news, from the cancellation of a long-running diabetes study to the rising number of measles cases across the U.S. They also discuss the nomination of Dr. Oz to lead the Centers for Medicare and Medicaid Services (CMS), potential Medicaid cuts tied to tax policy changes, and major layoffs at a key health research agency.
Tune in to hear what these developments mean for patients and how they could impact access to care.
Among the highlights in this episode:
00:35: Steven Newmark, Chief of Policy at GHLF, highlights the Trump administration’s decision to cancel funding for a 30-year diabetes study
01:09: Zoe Rothblatt, Director of Community Outreach at GHLF emphasizes the importance of long-term studies for chronic disease research
02:10: Steven shifts the conversation to the rising number of measles cases, noting over 300 reported cases so far this year
02:36: Zoe explains why the measles outbreaks are concerning, especially for immunocompromised individuals
03:27: Zoe advises those with chronic illness to monitor outbreaks and adjust travel plans accordingly
03:41: Steven discusses former CDC Director Dr. Rochelle Walensky’s call for a third MMR vaccine dose for certain infants aged 6-11 months traveling to high-risk areas
04:46: Steven transitions to discussing Dr. Oz’s nomination to lead CMS and his past support for Medicare Advantage plans and points out Dr. Oz’s openness to reducing Medicaid spending, which could limit access for low-income and disabled individuals
05:48: Steven discusses how Republican efforts to extend Trump-era tax cuts may lead to Medicaid budget cuts
07:41: Zoe reflects on how much uncertainty exists in health policy, emphasizing the need for advocacy
Join GHLF’s 50 State Network, share your story, and get involved in advocacy to make a difference, email us at advocacy@ghlf.org
08:16: Steven shares news about potential layoffs at AHRQ, a lesser-known but critical health research agency and highlights AHRQ’s research on ultra-processed foods, childhood obesity, and diabetes-related hospitalizations
09:59: Zoe expresses concern that cutting such research undermines broader public health goals
10:11: Steven ends on a positive note, reporting that flu rates are dropping and COVID cases remain low in the U.S.
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode our hosts sit down with Tennessee State Senator Shane Reeves, a pharmacist-turned-legislator, to discuss his journey from pharmacy to public office. Senator Reeves shares his firsthand insights into the obstacles pharmacists face in patient care and policy, the role of pharmacy benefit managers (PBMs), and why transparency in health care pricing is crucial for patients. He also breaks down his legislative efforts to support independent pharmacies, improve medication adherence, and advocate for patient-first policies.
Tune in for an engaging conversation on the intersection of health care and policy, and why patients should build strong relationships with their pharmacists.
Among the highlights in this episode:
01:14: Sen. Reeves shares how his father’s role as both a pharmacist and public servant inspired his own path into politics
02:07: Sen. Reeves discusses the unique presence of multiple pharmacists in the Tennessee State Senate and how it benefits health care legislation
03:10: Sen. Reeves explains the role of pharmacy benefit managers (PBMs) in the health care system and how their increasing control has negatively impacted pharmacists and patients
04:39: Steven and Sen. Reeves discuss how PBMs evolved from cost controllers to powerful entities influencing patient care decisions
05:34: Sen. Reeves describes his legislative efforts to prevent “patient steering,” ensuring prescriptions are filled at the provider or patient’s preferred pharmacy
07:18: Sen. Reeves emphasizes the lack of price transparency in health care and provides an example from Singapore, explaining how full health care price transparency allows patients to know the costs of medical services upfront in contrast with the U.S. where prices are often hidden until after services are rendered
08:06: Sen. Reeves discusses the impact of PBMs on independent pharmacies and the struggle to keep small, community-based pharmacies in business
09:12: Steven and Sen. Reeves discuss the real-life consequences of PBMs interfering in patient care, including delayed access to life-saving medications
09:51: Sen. Reeves shares his advocacy for better medication adherence and the role of pharmacists in helping patients stay on track
12:15: Zoe and Steven reflect on the discussion, emphasizing the importance of having legislators with health care expertise in office
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode of The Health Advocates, our hosts welcome Brindley Brooks, founder and executive director of HS Connect. Brindley shares her powerful journey living with Hidradenitis Suppurativa (HS) since age 10, including her misdiagnosis, the stigma surrounding HS, and how her life-changing decision to undergo surgery led her to become a passionate patient advocate. The conversation highlights the critical role of advocacy in supporting the HS community, including initiatives like GHLF's HS Patient Guide and the impactful work of HS Connect in raising awareness, providing education, and fostering a supportive community for those living with HS.
Among the highlights in this episode:
01:23: Brindley introduces herself and shares HS Connect’s mission of providing factual education and promoting shared decision-making
01:53: Brindley recounts her early experience with HS, initial misdiagnosis, and the stigma that discouraged her from seeking care for over a decade
03:57: Brindley describes the pivotal decision to undergo surgery, the transformative impact it had on her life, and finding empowerment through that choice
06:12: Brindley discusses the founding of HS Connect, its rapid growth, and the organization’s focus on correcting misconceptions and reducing stigma in the HS community
08:18: Steven Newmark, Chief of Policy at GHLF, talks about GHLF’s HS Patient Guide and highlights Brindley’s role in incorporating patient perspectives into the resource
08:36: Brindley shares why patient-involved educational resources are essential for HS patients and her experience collaborating with GHLF
09:37: Brindley explains the different levels of advocacy, from sharing personal stories to influencing federal policies, including a campaign for insurance coverage of laser hair removal for HS patients
10:46: Steven emphasizes the importance of collaboration between organizations like GHLF and HS Connect in advancing advocacy
11:26: Brindley outlines HS Connect’s 2025 priorities, including mental health initiatives like "Healing Space for HS" and broader advocacy campaigns
12:58: Brindley offers words of encouragement, urging those with HS to seek community support and to know they are not alone
To learn more about HS and access GHLF’s HS Patient Guide, visit: https://ghlf.org/hspatientguide/
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In honor of Black History Month, The Health Advocates welcome Dr. Georges Benjamin, Executive Director of the American Public Health Association (APHA). Dr. Benjamin shares his journey from emergency medicine to public health leadership, offering insights on health equity, community-based advocacy, and the ongoing challenges in public health. He discusses critical topics such as health care access and the importance of listening to communities to drive meaningful change.
Tune in for an insightful conversation about advancing public health for all.
Among the highlights in this episode:
02:08: Dr. Benjamin shares how his initial interest in molecular genetic research shifted toward emergency medicine and public health leadership
03:49: Dr. Benjamin discusses key challenges he has faced, from the HIV/AIDS epidemic to natural disasters and bioterrorism events
05:52: Dr. Benjamin highlights APHA’s focus on health insurance access, food insecurity, climate change, gun violence, reproductive rights, and vaccine advocacy
06:37: Zoe Rothblatt, Director of Community Outreach at GHLF, brings up the challenge of proving public health successes, noting that prevention often goes unnoticed
07:21: Dr. Benjamin explains how public health efforts prevent crises, using measles and vaccine hesitancy as examples
08:39: Zoe asks about the role of partnerships in public health, and Dr. Benjamin emphasizes collaboration as a key strategy
09:50: Dr. Benjamin shares personal experiences and the importance of diverse voices in decision-making
13:02: Zoe asks how public health programs should be evaluated, and Dr. Benjamin explains the importance of listening to communities before implementing solutions
14:45: Dr. Benjamin provides an example of how addressing social determinants of health, like safe neighborhoods, can make healthier choices more accessible
15:27: Dr. Benjamin shares his key takeaway: public health professionals must listen more than they talk
15:49 – Zoe and Steven Newmark, Chief of Policy at GHLF, reflect on Dr. Benjamin’s insights, emphasizing the importance of community engagement in public health
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this timely episode, The Health Advocates break down the recent Senate hearings for HHS nominee Robert Kennedy Jr.. They discuss the critical role of the HHS Secretary in shaping public health policy and managing key agencies like the FDA and CDC. The hearings exposed Kennedy’s controversial views on vaccines, concerns over scientific integrity, and notable missteps in understanding health policies.
Tune in to hear what this means for patients and what happens next in the confirmation process.
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, our hosts break down the executive actions taken during the early days of President Trump's second administration. They discuss the wave of executive orders impacting health care, including changes to the Affordable Care Act (ACA), prescription drug pricing, and federal health agency communications. Our hosts also explore what these changes mean for patients and what to expect in the coming months.
Among the highlights in this episode:
00:49: Steven Newmark, Chief of Policy at GHLF, notes that 23 executive orders have been signed so far, with a significant number impacting health care policy
01:27: Zoe Rothblatt, Director of Community Outreach at GHLF, explains the difference between executive orders, general statements, and legislation, clarifying what executive orders can and cannot do in shaping policy
02:08: Steven defines executive orders, explaining that they carry the force of law but cannot override congressional legislation or violate the Constitution
03:54: Zoe discusses the rescinding of a Biden-era executive order aimed at lowering prescription drug costs, highlighting the uncertainty about future drug pricing policies
05:10: Zoe reassures that key provisions of the Inflation Reduction Act (IRA), such as the $35 insulin cap and Medicare drug price negotiations, remain in effect
06:20: Steven explains how Trump’s reversal of Biden-era Affordable Care Act (ACA)-related executive orders removes provisions that expanded eligibility, particularly for families
07:09: Zoe highlights that expanded ACA enrollment under Biden led to 24 million sign-ups, and that reversing these policies could impact future enrollment
08:38: Steven discusses the administration’s directive to pause external communications from federal health agencies, including the CDC, FDA, and NIH
09:06: Zoe explains that such pauses aren’t unprecedented during government transitions
10:21: Steven questions the rationale behind pausing all health-related communications rather than maintaining continuity while reassessing policies
11:47: Steven addresses the removal of federal guidance on diversity in clinical trials, which could impact efforts to ensure equitable research representation
12:41: Zoe highlights how removing diversity-focused resources could discourage participation from historically marginalized groups in medical research
13:18: Steven explains the importance of diversity in clinical trials beyond symbolism, emphasizing its role in ensuring effective treatments for all populations
14:04: Zoe notes that additional resources, such as Spanish-language content and LGBTQ+ health materials, have also been removed from federal websites
14:27: Steven signals that there are more major health care policy changes ahead, including the U.S. withdrawing from the World Health Organization
15:11: Zoe encourages listeners to get involved in advocacy efforts through GHLF’s 50-State Network
Join GHLF’s 50 State Network, share your story, and get involved in advocacy to make a difference, email us at advocacy@ghlf.org
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
After years of searching for answers and enduring pain, veteran Joel Aguilar was finally diagnosed with psoriatic arthritis. In this episode, he shares his long road to diagnosis, the challenges of navigating the health care system, and how he found life-changing treatment. Joel also discusses how fitness has become a crucial part of managing his condition and offers valuable advice for veterans seeking care through the VA system.
Tune in for an inspiring conversation about perseverance, self-advocacy, and taking control of your health.
Among the highlights in this episode:
01:06: Joel shares how his symptoms began in his early 20s while serving in the Navy
01:21: Joel describes his long and frustrating diagnostic journey, including years of misdiagnoses, pain management attempts, and self-paid treatments
04:13: Zoe Rothblatt, Director of Community Outreach at GHLF, reacts to Joel’s story, emphasizing how important it is to receive an accurate diagnosis and effective treatment
05:18: Joel recalls the moment he was diagnosed within minutes by a rheumatologist and the immediate impact of starting treatment
06:15: Joel explains his initial hesitation to start injections and how he ultimately weighed the risks and benefits of treatment
06:58: Joel discusses the crucial role fitness plays in his psoriatic arthritis management, describing his rigorous workout routines
08:17: Zoe notes how counterintuitive exercise might seem for arthritis but explains why movement is essential for managing symptoms
10:02: Joel highlights how staying physically active has transformed his life and enabled him to do things he never thought possible
11:16: Joel shares how he discovered he was eligible for full VA health care benefits and how that drastically improved his access to care
12:46: Joel details the VA’s Community Care program, which allows veterans to access private health care providers if VA facilities are too far or have long wait times
13:53: Zoe encourages listeners to explore their VA benefits, noting how perceptions of long wait times might not reflect the current state of VA health care services
15:01: Joel advises other veterans and chronic illness patients not to give up in their search for a diagnosis and proper care
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
As we transition into a new administration, our hosts reflect on President Biden’s legacy in healthcare policy, focusing on three major areas that impacted patients: the COVID-19 response, the opioid crisis, and the Inflation Reduction Act. They discuss key achievements such as vaccine rollouts, reduced overdose deaths, and efforts to lower prescription drug costs, while also examining ongoing challenges and concerns. With the health policy landscape set to shift in 2025, this episode breaks down what patients need to know and how to stay engaged in advocacy for better care.
Among the highlights in this episode:
00:40: Steven Newmark, Chief of Policy at GHLF, outlines three key areas where the Biden administration made a significant impact in health care: COVID-19 response, the opioid crisis, and the Inflation Reduction Act (IRA)
01:28: Steven highlights the Biden administration’s mass vaccination campaign, which saved an estimated 3.2 million American lives, according to the Commonwealth Fund
01:49: Zoe Rothblatt, Director of Community Outreach at GHLF, gives credit to Operation Warp Speed under Trump for fast-tracking vaccine development but emphasizes that the bulk of vaccinations happened under Biden
02:43: Zoe reflects on how the pandemic's threat level has changed, largely due to vaccines and continued booster developments
02:58: Steven shifts the discussion to the opioid crisis, explaining that overdose deaths were rising at 31% per year when Biden took office
03:35: Steven discusses how the administration's overdose prevention efforts led to a 14.5% decrease in overdose deaths — the largest reduction in U.S. history
04:17: Zoe explains how removing barriers to Naloxone access reduces response time during an overdose emergency
04:50: Steven discusses how Biden removed an outdated waiver requirement that expanded opioid treatment access by 15 times
06:11: Steven shifts focus to the IRA, explaining that it was one of Biden’s most significant health care policies
06:27: Zoe highlights a major win: capping Medicare Part D out-of-pocket prescription costs at $2,000 per year, down from $3,500
07:29: Steven explains why this is life-changing for seniors and people with disabilities, as many rely on multiple expensive medications
08:48: Zoe discusses the $35 monthly cap on insulin prices for Medicare patients, ensuring those with diabetes have affordable access to life-saving medication
09:11: Steven explains the potential downside of IRA’s Medicare drug price negotiations, which could reduce incentives for drug companies to develop new treatments
10:32: Zoe reminds listeners that with the upcoming presidential transition, health policies could change significantly, and GHLF will continue advocating for patient needs
11:01: Steven encourages listeners to join GHLF’s 50-State Network, stay informed, and share their stories to help shape health policies.
Join GHLF’s 50 State Network, share your story, and get involved in advocacy to make a difference, email us at advocacy@ghlf.org
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this season premiere of The Health Advocates, our hosts welcome Nitika Chopra, the Founder and CEO of Chronicon. Nitika shares her personal journey of living with psoriasis and psoriatic arthritis and how her experiences inspired her to create Chronicon, a platform and community aimed at empowering people living with chronic illnesses. Together, they discuss the importance of amplifying marginalized voices, making accessibility a priority, and building a supportive network for those with chronic conditions.
Tune in to hear Nitika’s inspiring story and her vision for fostering change and connection in 2025.
Among the highlights in this episode:
00:40: Steven Newmark, Chief of Policy at GHLF, introduces Nitika Chopra, highlighting her journey with psoriasis and psoriatic arthritis and her work as the founder of Chronicon
01:30: Nitika shares her background, her experience of living with chronic illness for over 30 years and her motivation for starting Chronicon
02:04: Nitika recounts her diagnosis journey, starting with psoriasis at age 10 and later psoriatic arthritis at 19, and how growing up without a community left her feeling isolated
03:53: Nitika shares a memory of her first connection with another chronic illness patient — her grandmother, who had myasthenia gravis — and how their experiences differed but inspired her advocacy
05:32: Zoe Rothblatt, Director of Community Outreach at GHLF, asks Nitika to elaborate on the evolution of Chronicon, from an in-person conference in 2019 to an online community and event tours post-pandemic
08:16: Nitika shares a rewarding moment from her journey — the overwhelming response to Chronicon’s first conference and the connections it fostered among attendees
10:47: Nitika shares the inspiration behind Chronicon, crediting a transformative experience at another conference that sparked the idea of creating an inclusive and empowering space for those with chronic illness
13:46: Nitika discusses the importance of uplifting marginalized voices in the chronic illness community and her commitment to ensuring diversity in every panel at Chronicon events
16:19: Nitika highlights where listeners can follow Chronicon on Instagram (@chroniconofficial) and stay updated on upcoming events, including her 2025 spring and fall tours
16:41: Zoe and Steven emphasize the importance of making accessibility and inclusivity integral parts of advocacy efforts
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special season finale of The Health Advocates, our hosts look back on a year of legislative wins, advocacy milestones, and patient-driven successes in 2024. From step therapy reforms to copay accumulator bans, they highlight progress at both state and federal levels. Steven and Zoe also share their advocacy priorities for 2025, including the Safe Step Act, Help Copays Act, and continued vaccine advocacy. Join us as we celebrate the power of patient stories, look ahead to a critical year in health policy, and thank the advocates who made this progress possible.
Among the highlights in this episode:
00:37: Our hosts kick off the final episode of 2024 by thanking listeners and celebrating this year’s achievements in advocacy and health policy
01:20: Steven Newmark, Chief of Policy at GHLF, highlights legislative victories: Oregon, Vermont, and Puerto Rico passed laws banning copay accumulator adjusters, while the Help Copays Act gains momentum federally
02:33: Our hosts discuss step therapy reforms, with Illinois, Vermont, and Wyoming joining 25 other states in passing protections. Steven shares progress on the Safe Step Act at the federal level
03:00: Zoe Rothblatt, Director of Community Outreach at GHLF, explains the importance of non-medical switching reforms, with Iowa achieving key wins alongside advances in biomarker testing legislation in several states
03:33: Steven introduces the work on Prescription Drug Affordability Boards (PDABs), where GHLF actively engaged in Colorado, Oregon, and Maryland to amplify patient voices
05:31: Zoe and Steven outlines priorities for 2025 at the state level, including copay accumulator bans, Share the Savings initiatives in New York, and continued focus on vaccines and drug affordability
If you want to get involved with any of the issues mentioned above email us at advocacy@ghlf.org
To learn more about the 50-State Network’s Advocating for Vaccines Training, visit: https://ghlf.org/vaccine-training-page/
06:40: Our hosts set the stage for federal advocacy in 2025, emphasizing key legislation like the Safe Step Act, Help Copays Act, and Treat and Reduce Obesity Act (TROA)
08:12: Steven and Zoe reflect on the potential impacts of the Trump administration, including key nominations like RFK Jr. for the U.S. Department of Health and Human Services (HHS) and Dr. Oz for Centers for Medicare & Medicaid Services (CMS)
11:10: Our hosts discuss the complexities of the U.S. health care system, the burden on chronic disease patients, and the role of advocacy in improving access and affordability
15:16: Steven explains the importance of balancing public and private health care options to ensure fairness and equity for all patients
16:53: Zoe wraps up with a call to action for 2025
Join GHLF’s 50 State Network, share your story, and get involved in advocacy to make a difference, email us at advocacy@ghlf.org
17:47: Steven and Zoe exchange heartfelt reflections on the season, expressing gratitude to listeners and excitement for what’s to come in 2025
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
This Crohn’s and Colitis Awareness Week we’re joined by Keyla Caba, who lives with Crohn's disease and ulcerative colitis, and is the Founder of the nonprofit Connecting Pieces. Keyla shares her patient journey, talks about the common misconceptions people have about inflammatory bowel disease (IBD), and why awareness and community is important.
Among the highlights in this episode:
00:58: Keyla shares about her journey of living with IBD for over 12 years, her delayed diagnosis, and her experience as a caregiver to her child with ulcerative colitis
02:32: Keyla explains the challenges of living with an invisible illness and the importance of raising awareness for IBD
03:35: Keyla reflects on the progress in IBD treatments and the vital need for increased visibility and resources for patients
05:09: Keyla describes her early days as a newly diagnosed patient, highlighting the importance of tracking symptoms, finding community support, and effective communication with health care providers
06:11: Zoe Rothblatt, Director of Community Outreach at GHLF, asks Keyla about common misconceptions regarding Crohn’s disease and ostomies, sparking a discussion about stigma and myths
07:39: Keyla describes what a good day looks like versus a bad day, emphasizing her gratitude for even small victories
09:33: Keyla dives into how her relationship with food has evolved, including the challenges of managing an ostomy and adapting her diet through trial and error
11:45: Keyla discusses how she stays positive during flare-ups and the role of self-care, journaling, and social media in managing her mental health
13:16: Keyla shares how her personal experiences led her to advocate for better health care access and improved insurance policies for IBD patients
14:46: Keyla details her advocacy work, including lobbying legislators to improve insurance coverage for ostomy supplies and raising awareness through state and federal initiatives
17:17: Keyla introduces her nonprofit, Connecting Pieces, and its services, including free ostomy supplies and virtual support programs for patients and caregivers. To learn more about Connecting Pieces, visit: https://www.connectingpcs.org/
18:11: Keyla’s message of hope encourages listeners to reach out to the IBD community and embrace available support
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this year’s Thanksgiving special of The Health Advocates, Steven and Zoe delve into an important topic — weight bias — and how it impacts the chronic illness community. They explore the misconceptions surrounding weight and health, share strategies for fostering compassionate care, and encourage listeners to use the holiday as an opportunity to educate and advocate with loved ones. Join them for an inspiring conversation filled with practical advice, personal reflections, and gratitude for the patient advocacy community.
Among the highlights in this episode:
03:17: Zoe Rothblatt, Director of Community Outreach at GHLF, highlights the importance of policy advocacy, mentioning federal legislation like TROA (Treat and Reduce Obesity Act), and how GHLF’s 50-State Network supports such initiatives
Join GHLF’s advocacy efforts and sign up for the 50-State Network to get involved
More information via this link: https://www.50statenetwork.org/become-a-50-state-network-advocate/
04:03: Steven Newmark, Chief of Policy at GHLF, explains how tackling weight bias can create a supportive environment, enabling people to pursue health without fear of stigma
04:21: Zoe points to research showing that unbiased, compassionate care leads to better health outcomes for patients
05:17: Steven and Zoe share their Thanksgiving traditions, from watching the Macy’s parade to relaxing with family and reflecting on the year
06:21: Zoe reminds listeners to be thankful for their own resilience and growth over the past year, encouraging them to rest and recharge
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
We’re reporting live from the American College of Rheumatology (ACR) Convergence 2024 in Washington, D.C., a yearly gathering for rheumatology experts worldwide. Join us as we talk to rheumatologists, researchers, and patients to discover how these advancements in research are shaping the future of health and advocacy.
Among the highlights in this episode:
00:43: Dr. Sharon Dowell discusses her background as a rheumatologist and her favorite ACR session, "Thieves Market," which emphasizes the diversity of rheumatology cases
01:27: Dr. Dowell explains how events like ACR enhance advocacy by providing opportunities for networking and sharing global perspectives on patient care
02:24: Dr. Swamy Venuturupalli shares his excitement about lupus-specific sessions, especially on CAR T cell therapy, and how these advancements could help his patients
03:36: Dr. Venuturupalli emphasizes the importance of ACR as a global platform for learning and collaboration in rheumatology research
04:25: Cristina Montoya, a registered dietitian and patient advocate, shares her experience presenting on unrecognized symptoms of rheumatic diseases
05:29: Cristina highlights her work with the OMERACT Children’s Disease Working Group and her contributions to developing new outcomes for clinical trials
06:44: Dr. Shilpa Venkatachalam reflects on the patient-centered focus at ACR 2024 and the collaborative advancements in biologics and treatment modalities
09:02: Dr. Venkatachalam explains the value of patient-centered research in making invisible diseases visible through patient-reported outcomes and clinical data
12:06: Dr. Venkatachalam discusses how tools like PatientSpot empower patients to advocate for themselves by providing a full picture of their lived experiences
For more information about PatientSpot, visit: https://patientspot.org/
13:14: Zoe wraps up the episode, emphasizing the significance of research presented at ACR in improving patient outcomes and advocacy efforts
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, we’re joined by Ron Howrigon, President of Fulcrum Strategies, who specializes in guiding doctors through the complexities of insurance policies. Ron shares his unique journey from working on the insurance side to advocating for physicians and patients against unfair industry practices. We dive into the challenges of prior authorization, insurance denials, and their impact on physician burnout. Ron sheds light on the incentives driving insurance companies and the reasons behind coverage battles, while offering thoughtful solutions to improve the system for patients and health care providers alike.
Among the highlights in this episode:
01:17: Ron explains his career shift from working for major insurance companies to founding Fulcrum Strategies, motivated by his personal experience during his child's birth
03:15: Ron describes the main focus of his work: helping physicians negotiate fair reimbursement terms with insurance companies and address issues like prior authorization
06:04: Ron highlights common problems physicians face, including retroactive denials and patients being unable to afford out-of-pocket costs despite having insurance
08:14: Ron discusses the motivation behind insurance companies’ tactics, explaining the profit-driven nature of the industry and how it conflicts with patient care needs
09:49: The conversation shifts to the challenges of managing chronic disease within the insurance system, with Ron explaining the adverse selection and cost issues insurers face
11:01: Zoe Rothblatt, Director of Community Outreach at GHLF, shares her personal experience with biologic medication costs, highlighting the financial burden on chronically ill patients
13:46: Ron offers his perspective on potential solutions, including the possibility of universal health care and reforming the insurance industry's approach to prior authorization
15:29: The discussion addresses the need for accountability in the insurance industry, with Ron suggesting that medical directors be held to the same standards as prescribing doctors
18:49: Ron offers a message of resilience and hope, encouraging patients and physicians to continue advocating for policy change and better care
19:57: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special post-election episode of The Health Advocates, Steven Newmark, Chief Policy Officer at the Global Healthy Living Foundation, provides an update on the potential impacts of Donald Trump’s second non-consecutive presidential term on health care. With changes expected in the Senate and possible shifts in the House, Steven breaks down how Trump’s administration, along with controversial figures like Robert F. Kennedy Jr., may influence public health agencies, Medicaid, Medicare, and the Affordable Care Act. Tune in for a quick, informative recap of the election's health care implications.
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special Halloween episode of The Health Advocates, we’re diving into some spine-chilling experiences in the health care system. Our guests open up about their scariest moments — from misdiagnoses and panic attacks in MRI machines to doctors dismissing their pain. But it’s not all fright! They share how these tough experiences helped them become stronger self-advocates, turning fear into resilience.
Among the highlights in this episode:
01:34: Shelley Fritz, Patient-Centered Engagement and Insights Manager at GHLF, describes her experience on Easter weekend in 2017, when she started experiencing severe chest pain and difficulty breathing
06:47: Shelley shares that she was diagnosed with bilateral pulmonary embolisms (blood clots in both lungs) — a potentially fatal condition and recalls how a nurse, unaware of her diagnosis, carelessly lifted her, worsening her pain. Shelley had to advocate for different pain management, eventually receiving proper treatment after several hours
11:26: Sarah Shaw, Associate Director of Diversity, Equity, Inclusion & Community Outreach at GHLF, shares how her doctor’s frustration with her lack of progress led to a shocking comment, labeling her a “problem patient.” Sarah felt blamed for not responding to treatments but decided to find a new doctor who would advocate for her and work collaboratively on her treatment plan
15:23: Sarah reflects on her positive experience with her new doctor, who reassures her that “the treatment failed you, not the other way around,” a supportive approach that transformed her journey, emphasizing the importance of finding a doctor who listens and treats patients as partners in their care
18:53: Zoe Rothblatt, Director of Community Outreach at GHLF, shares her own story of feeling dismissed by a dermatologist who kept her waiting for over two hours, only to rush through the appointment and offer unsolicited advice on her autoimmune treatment, making her feel uncomfortable and disregarded
21:59: Zoe reflects on the lessons learned: the importance of trusting her instincts, finding providers who respect her time, and ensuring she feels comfortable speaking up during appointments
26:44: JP Summers, Senior Patient Advocate and Community Outreach Manager at GHLF, describes the panic attack she experienced while in the MRI machine due to severe claustrophobia. This led her to advocate for an open MRI despite initial insurance denials, highlighting how crucial it is to speak up for her needs in challenging health care situations
32:54: Zoe thanks JP for sharing her story, acknowledging the anxiety diagnostic tests can trigger for chronic illness patients, and underscores the importance of knowing there are often alternatives available
36:19: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, we discuss the 2024-2025 fall vaccine lineup, covering everything you need to know to stay protected this season. We start with updates on the latest COVID and flu vaccines, and Zoe shares her personal experience getting these shots. We then dive into the recent approval of self-administered FluMist, exploring how it compares to the traditional injectable flu vaccine in terms of effectiveness and convenience. Plus, we provide a brief update on RSV.
Among the highlights in this episode:
00:36: Steven Newmark, Chief of Policy at GHLF, discusses the CDC’s updated COVID vaccine recommendations, emphasizing that everyone aged six months and older should receive the 2024-2025 COVID-19 vaccine
00:48: Zoe Rothblatt, Director of Community Outreach at GHLF, addresses common questions from the immunocompromised community, highlighting the CDC's guidance on additional COVID doses and the importance of consulting with health care providers
01:13: Steven and Zoe explain the distinction between updated vaccines and boosters, noting that updated vaccines target new strains and are expected to be revised annually
02:24: Steven shares data from 2023, pointing out that most people hospitalized for COVID had not received the updated vaccine, underlining its importance
02:46: Zoe highlights the concern of long COVID and how getting vaccinated can reduce the risk of developing this condition
03:16: Zoe shares her personal experience of getting both the flu and COVID shots together, and gives tips on how to coordinate vaccination plans with a doctor
04:23: Steven introduces the FDA approval of FluMist for self or caregiver administration, explaining how it provides an alternative to the traditional flu shot
06:02: Zoe explains that FluMist is not recommended for the immunocompromised
07:10: Steven discusses the benefits of having options like FluMist, stating that it's good to have more ways to get vaccinated
08:09: Zoe shares insights on managing treatments around vaccine schedules, emphasizing the importance of personalizing health care decisions
09:39: Zoe provides information on the RSV vaccine, mentioning its availability for older adults, pregnant women, and the benefits for newborns
10:09: Steven reminds listeners about the availability of free rapid COVID tests from the federal government, encouraging people to have them on hand during the respiratory virus season
11:04: Zoe announces the launch of the second season of GHLF’s Informed Immunity podcast, which covers topics around vaccines, immunization equity, and debunking myths
To listen to all the Informed Immunity episodes, visit: https://ghlf.org/informed-immunity/ or search for the series on your favorite podcast platform
11:28: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this special World Sight Day episode, Steven and Zoe are joined by Caroline Casey, President of the International Agency for the Prevention of Blindness (IAPB), and Seth Ginsberg, President of the Global Healthy Living Foundation (GHLF). Together, they explore the critical importance of eye health, especially for those living with chronic diseases like thyroid eye disease and diabetes. Caroline and Seth discuss global initiatives, innovative campaigns like "Love Your Eyes," and how advocating for better eye health can transform lives.
Tune in as we raise awareness for blindness prevention, highlight the need for regular eye checkups, and share valuable insights on how chronic conditions can impact vision.
Among the highlights in this episode:
01:17: Caroline Casey introduces herself, sharing her story as an advocate for eye health and her role as President of IAPB
01:51: Seth Ginsberg gives a brief overview of GHLF, explaining how the organization supports patients with chronic illnesses, including those facing vision impairment due to chronic conditions
02:37: Caroline explains the mission of World Sight Day, highlighting the global attention it brings to blindness, eye health, and vision impairment
03:45: Seth discusses the connection between chronic diseases and eye health, emphasizing how conditions like thyroid disorders and diabetes can affect vision
05:47: Caroline describes IAPB's initiatives, including the "Love Your Eyes" campaign and efforts to provide eye care to children and workers globally
09:51: Seth highlights GHLF’s work on thyroid eye disease, detailing GHLF’s resource hub in Australia and how they aim to empower patients to manage their condition
To find all of GHLF’s resources on thyroid eye disease, visit: https://ghlf.org.au/thyroideyedisease/
12:44: Caroline underscores the importance of regular eye checkups, especially for those using devices that strain the eyes, and encourages listeners to take action on World Sight Day
15:40: Seth shares how advocacy empowers patients, explaining the importance of speaking up about symptoms and advocating for better treatments and health care access
18:47: Caroline explains the challenges in making eye health a global priority, highlighting the importance of integrating eye care into primary health care systems
21:32: Seth offers final thoughts, urging listeners to take care of their vision and seek regular eye checkups, especially if they have chronic health conditions
23:38: Caroline and Seth encourage listeners to make a pledge to prioritize eye health, reiterating the importance of advocacy and self-care for both eye health and chronic conditions
24:12: What our hosts learned from this episode
To learn more about IAPB, visit: https://www.iapb.org/
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, we are joined by Estela Mata, President and CEO of Looms for Lupus, a non-profit dedicated to raising awareness and providing support for those living with lupus, and other chronic conditions. Estela shares her personal and family journey with lupus and the profound impact of advocacy. She highlights the importance of community, the need for increased awareness, and the power of sharing personal stories, especially within the Hispanic community. Estela’s message of hope and resilience is a reminder of the strength found in community and the critical role of advocacy in chronic illness management.
Among the highlights in this episode:
01:13: Estela shares the personal story of her sister Juana’s battle with lupus, including the challenges of diagnosis and the importance of persistence in seeking medical care
02:46: Zoe Rothblatt, Director of Community Outreach at GHLF, and Estela, discuss the critical role of advocacy in chronic illness, with Estela explaining how she and her family became advocates to support others facing similar struggles
04:01: Estela reflects on the powerful connections formed through advocacy, emphasizing how community support can provide strength and hope
05:56: Estela recounts the origins of Looms for Lupus, explaining how it was founded by her and her sisters to provide support, education, and advocacy for those affected by lupus and other chronic conditions
07:07: Estela discusses her involvement in clinical trials, highlighting the importance of being informed and the role of clinical trials in offering hope for new treatment options
08:52: Zoe and Estela discuss the therapeutic value of creative activities like loom knitting and crocheting, particularly as coping mechanisms during challenging times
10:44: Estela talks about expanding Looms for Lupus to support individuals with other chronic conditions, emphasizing the importance of overall awareness and education
11:35: Estela shares insights on the health disparities faced by the Hispanic community and the critical need for culturally competent care and early diagnosis
13:10: Estela discusses the impact of advocacy within the Hispanic community and highlights the importance of using one's voice to demand equitable health care and reduce stigma
16:59: Estela concludes by encouraging listeners to get involved in advocacy, sharing her sister's empowering slogan: “Never give in, never give up, never let go. Just keep fighting”
20:10: What our hosts learned from this episode
If you want to subscribe to our email newsletter to learn more about clinical trials, especially for lupus patients, please send your contact information via this form: https://bit.ly/LupusHelpCenter
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, we’re joined by Jessica Buckley, President and CEO of the Lung Health Foundation (LHF), and Dr. Dawn Bowdish, scientist and the Executive Director of the Firestone Institute for Respiratory Health and member of the Board of Directors of the LHF. We talk about how asthma, despite being common, can be complicated to diagnose and that many are living with uncontrolled asthma. Jessica and Dawn also share recent survey results of asthma patients’ experience, and how patients can set health goals with an asthma action plan and advocate for better air quality.
Among the highlights in this episode:
01:32: Dawn shares her journey to becoming a leading researcher in respiratory health and her role at the Firestone Institute
01:58: Jessica talks about the mission and impact of the Lung Health Foundation in advocating for lung health across Canada
02:33: Jessica shares her personal motivation driven by family experiences with lung diseases, emphasizing the widespread need for lung health awareness
03:06: Dawn discusses how personal encounters at a gala event deeply influenced her dedication to lung health advocacy
05:34: Dawn explains the medical basics of asthma, its triggers, and the importance of proper diagnosis and management
08:09: Jessica addresses common issues faced by individuals living with asthma, particularly the lack of proper asthma action plans
10:36: Dawn discusses how external factors like air quality and climate change are increasingly important for asthma management
14:20: Jessica explains how the Lung Health Foundation educates the public and advocates for policies to improve lung health
17:21: Jessica discusses a new campaign aimed at enhancing public appreciation for lung health and proactive care
19:14: Dawn and Jessica offer insights into the advancements in asthma treatment and the importance of an effective asthma action plan
21:42: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Yvan Baker, member of the House of Commons of Canada, joins us to talk about Canadians’ health care issues and needs. Mr. Baker discusses the benefits of Canada’s universal health care system for essential services and needs, but highlights gaps in the system like doctor shortages, delays in services, and how until recently dental care was not part of the system. He shares how he’s helped advocate for the expansion of dental care, for the government to consider patient outcomes, and his work with the older adult community.
Among the highlights in this episode:
00:45: Mr. Baker shares his background, including his work as a consultant and his transition into politics, explaining how his experience in business and education led him to focus on health care in public service
01:56: Mr. Baker details why health care is a critical focus for his political career, citing personal philosophy and the universal health care system in Canada as major influences on his legislative efforts
03:29: Steven Newmark, Chief of Policy at GHLF, and Mr. Baker discuss the unique ability of government to effect change in health care, emphasizing the necessity for patient advocacy and government responsiveness to improve health services
04:53: Mr. Baker explains ongoing efforts to close gaps in the Canadian health care system, highlighting recent initiatives to improve access to essential health services
06:08: Mr. Baker talks about government strategies to reduce wait times and improve service delivery, including funding approaches that tie financial support to specific health care outcomes
07:14: Mr. Baker and Steven discuss the expansion of Canada’s health care system to include dental care, detailing the structure and goals of the new dental care program aimed at increasing accessibility
08:28: Mr. Baker highlights his work on broader health care initiatives, including efforts to strengthen support for senior citizens and improve the overall health care infrastructure
10:45: Mr. Baker emphasizes the importance of health care advocacy, sharing insights on the impact of effective government action and the need for continued public engagement in shaping health care policies
12:34: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
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We’re joined by Amanda Krzepicki, Policy Director at the Autoimmune Association. We talk about the long process of getting legislation passed, top issues the Autoimmune Association is advocating for, and how patient groups can come together to make a difference.
Among the highlights in this episode:
00:59: Amanda discusses her early career experiences and how they led her to patient advocacy, particularly focusing on autoimmune diseases
02:21: Amanda describes the work and impact of the Autoimmune Association, emphasizing its global outreach and patient support initiatives
03:08: Amanda explains the complex process of turning a bill into law and how patients can influence this process to result in more patient-friendly outcomes
05:33: Amanda gives a detailed account of recent successful advocacy efforts related to Medicaid drug rebates, highlighting the collaborative nature of these efforts
07:14: Amanda and Steven Newmark, Chief of Policy at GHLF, discuss the unintended consequences of rapid policy changes and the importance of thorough consideration and dialogue
08:47: Amanda and Steven stress the significance of forming coalitions among patient groups to strengthen their advocacy efforts
10:04: Amanda reveals how checking social media profiles of staff members helped reduce her nervousness before meetings with stakeholders
11:01: Steven and Amanda discuss how personal connections can aid in advocacy efforts, making legislative staff more relatable and approachable
11:22: Amanda outlines the current top issues she is working on, including the Safe Step Act and other legislative measures aimed at improving health care accessibility
14:28: Steven and Amanda emphasize the critical role of unity among patient advocacy groups in driving policy changes and achieving collective goals
15:57: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Welcome to our special episode of The Health Advocates hosted by our 50-State Network and the Obesity Action Coalition (OAC). This episode features advocates Jody Quinn, Judy Nagy, Yolanda Clay, and Alecia Smith, who share their personal journeys — how they began sharing their stories, the invaluable support of community, the challenges they faced, and their successes along the way. You'll also hear their advice for others looking to make a difference.
Among the highlights in this episode:
01:17 - Judy recounts how being diagnosed with rheumatoid arthritis led her to advocacy and her extensive involvement with legislative support
02:12 - Jody describes her late diagnosis of psoriatic disease and her initial reluctance turned commitment to advocacy
03:14 - Alicia talks about her journey from seeking support for obesity to becoming a prominent advocate through the OAC
04:10 - Yolanda discusses her personal experiences with chronic obesity and how overcoming internal barriers propelled her into advocacy
05:22: Kendall prompts a discussion on how to get started in advocacy, with personal insights from each guest
07:00: Our guests discuss the importance of connecting with patient groups and finding communities that provide training and support for new advocates
08:56 - Alicia emphasizes the role of genuine passion in making an impact and connecting with others through advocacy
13:20 - Alicia reflects on her initial fears and how understanding the impact of personal stories helped her gain confidence in advocacy settings
16:36 - Judy emphasizes the critical role of fellowship and mentorship in navigating the complexities of advocacy and building resilience
20:25 - Jody highlights how mentors have supported her through her advocacy journey, sharing their knowledge and boosting her confidence in various advocacy activities
23:34 - Yolanda discusses her ongoing efforts to manage expectations and maintain motivation despite the slow pace of change in advocacy work
26:20 - Judy reflects on the need for patience in advocacy, sharing her long-term experience with legislative processes and the eventual rewards of persistent advocacy efforts
28:05 - Each guest offers their advice to those considering advocacy, emphasizing the importance of community, mentorship, and personal growth
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
Special Episode Co-Hosts
Kendall Griffey, Communications Manager at OAC
Erik Stone, Associate Director, Learning Experience Design at GHLF
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, we’re joined by Kevin Stephens, a weight loss surgery patient, and an active advocate with the Obesity Action Coalition (OAC). In this episode, we learn about Kevin’s struggle with his weight since childhood and the many health issues that come along with obesity. We talk a lot about the importance of health insurance coverage and reducing barriers to accessing treatment.
Among the highlights in this episode:
01:05: Kevin shares how he got involved with OAC and his personal connection to obesity advocacy
02:44: Kevin reflects on how his professional experience in health care policy complements his advocacy work
04:19: Kevin discusses his lifelong struggle with obesity, the decision to undergo weight loss surgery, and the transformative impact it had on his health and lifestyle
06:22: Kevin talks about the support he received from his workplace and the challenges he faced in accessing necessary treatments
09:04: Kevin highlights how obesity has affected various aspects of his health and the importance of recognizing obesity as a chronic disease
12:16: Kevin discusses his experiences with health care providers and insurance barriers in accessing new treatments for obesity
15:34: Kevin speaks on the importance of advocacy in overcoming health care biases and improving access to treatments
18:32: Kevin offers advice to other patients on how to start advocating for themselves and the impact of sharing personal stories
23:14: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, we’re breaking down the current viral landscape, focusing on COVID-19, mpox, norovirus, bird flu, and pertussis. We will discuss the unique challenges these viruses pose to immunocompromised individuals and offer practical advice on how to stay protected from viruses during this hot summer. We also recap the recommendations from the recent ACIP meeting, the advisory committee to the CDC on vaccines.
Among the highlights in this episode:
01:10: Zoe Rothblatt, Director of Community Outreach at GHLF, begins the discussion on the current state of COVID-19, noting that while cases are rising, the levels are still much lower compared to the pandemic’s peak
02:11: Steven Newmark, Chief of Policy at GHLF, discusses the emergence of new COVID-19 variants and the importance of adapting vaccinations to combat these changes effectively
03:16: Our hosts talk about the specific challenges facing Hawaii, including higher COVID-19 rates possibly due to less community immunity and challenges in vaccine distribution
05:22: Zoe highlights the rise in norovirus cases and reminds listeners about the simple yet effective measure of handwashing to prevent spread
07:13: Steven updates on the latest bird flu cases, reassuring that the transmission remains from animals to humans, not between humans
08:19: The discussion shifts to the ongoing heatwave, with advice on how medications might interact with high temperatures and the importance of staying hydrated
09:53: Steven provides a summary of the latest CDC recommendations for vaccinations, including the new directives for COVID-19, RSV, and pneumococcal vaccines
11:09: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, breast surgical oncologist and president of the Black Physicians' Association of Ontario, Dr. Mojola Omole, joins us to talk about her advocacy work. She shares how she aims to increase the percentage of Black physicians in Ontario, reduce systemic barriers and racism in medicine, and support Black mental health. We also discuss the need for more robust data that accounts for racial differences to inform screening recommendations.
Among the highlights in this episode:
01:50: Dr. Omole shares her reasons for specializing in breast cancer, emphasizing her enjoyment of its multidisciplinary approach and the opportunity it presents for impactful advocacy and community outreach
04:31: Dr. Omole discusses the systemic barriers preventing Black individuals from entering the medical field
06:08: Dr. Omole talks about her work with the Canadian Medical Association Journal
07:10: Dr. Omole explains the misconceptions around 'over-screening' and emphasizes the importance of recognizing biological differences across populations in medical treatment and screening practices
09:15: Dr. Omole discusses the lack of training in medical schools regarding the variations in disease presentation across different populations, emphasizing the need for medical education to incorporate diverse biological and social contexts
11:15: Dr. Omole discusses the Canadian taskforce on preventative health care’s recommendations on breast cancer screening, arguing they do not reflect the earlier ages at which women of certain ethnic backgrounds typically present with breast cancer
13:20: Dr. Omole suggests that economic considerations heavily influence national screening recommendations in Canada, which may lead to later diagnoses and poorer outcomes in underrepresented populations
15:00: Zoe reflects on the conversation, noting the critical shortage of family physicians in Canada, which impacts routine screening and health care access
15:19: Dr. Omole offers advice to other health care providers on staying informed and understanding the unique risk factors and needs of diverse patient populations to provide better, more personalized care
16:19: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, The Health Advocates are joined by their colleagues Kelly Gavigan, Chief Data and Analytics Officer, and Adam Kegley, Associate Director of Global Partnerships at GHLF. Together they delve into the unique challenges faced by the LGBTQ+ community in managing Inflammatory Bowel Disease (IBD). Based on the analysis of the results from a survey GHLF recently conducted, they explore how identity impacts health care experiences and treatment outcomes. This episode shines a light on the critical need for inclusive health care practices and offers valuable insights on improving patient-provider relationships. Join us as we uncover the lessons learned and steps forward for LGBTQ+ individuals living with IBD.
Among the highlights in this episode:
01:52: Zoe Rothblatt, Director of Community Outreach at GHLF, provides an overview of IBD, explaining the types and common symptoms
03:14: Adam discusses general and specific challenges faced by the LGBTQ+ community in health care settings, focusing on the impact of discrimination and the importance of inclusive practices
06:05: Kelly explains the objectives behind the survey and the methodology used to capture data from LGBTQ+ individuals with IBD
06:41: Kelly details the main findings from the survey, including demographic information and the impact of disclosing sexual and gender identities to health care providers
09:07: Adam discusses the apprehension LGBTQ+ individuals may feel about disclosing their sexual and gender identities to health care providers and explains the impact of anticipated discrimination, which can deter individuals from seeking necessary medical care
10:36: Kelly highlights the intention behind the survey to understand the specific needs and challenges faced by LGBTQ+ individuals with IBD
11:50: Kelly shares some surprising findings from the survey, such as the high percentage of participants who identified as gender other than cisgender man or woman, noting the importance of this diversity in respondents to gain a comprehensive understanding of the community’s needs
13:01: Adam reflects on the positive outcomes reported by survey participants who disclosed their LGBTQ+ identity to their health care providers, emphasizing how openness can lead to more personalized and effective health care, reducing the incidence of discrimination and improving overall patient satisfaction
14:23: Adam offers advice to LGBTQ+ patients who may be hesitant to disclose their identity to health care providers
15:40: Kelly discusses the next steps following the survey, focusing on how the findings can be used to develop targeted resources and educational materials for LGBTQ+ individuals with IBD
16:55: Adam and Kelly express their hope that the survey findings will lead to meaningful changes in how health care is delivered to LGBTQ+ individuals with IBD
18:51: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, join The Health Advocates as they dive into the latest health news with a focus on the emerging H5N1 bird flu and its implications. They discuss the virus's potential to affect humans, current states with detected cases, and public health strategies to mitigate its spread. The hosts also touch on recent COVID-19 variants and the development of combined COVID and flu vaccines, reflecting on public health lessons learned from past pandemics and how these insights are shaping responses to new threats.
Tune in as our hosts discuss ongoing infectious disease challenges and the proactive measures in place to protect public health.
Among the highlights in this episode:
00:45: Steven Newmark, Chief of Policy at GHLF, discusses the emergence of H5N1 bird flu affecting dairy cattle and notes human infections linked to farms
02:15: Steven reflects on public health responses to infectious diseases and the importance of early containment
03:24: Zoe Rothblatt, Director of Community Outreach at GHLF, discusses a new COVID variant, KP3, highlighting its characteristics and impacts
05:11: Steven and Zoe discuss new vaccine strategies for COVID-19, including an FDA panel's recommendations and the development of a combined COVID and flu vaccine by Moderna
06:21: Zoe highlights the potential public health benefits of a combined COVID and flu vaccine
07:08: Steven mentions a new FDA approval for an RSV vaccine for adults aged 50-59
08:01: Zoe and Steven discuss recent congressional hearings on COVID-19 origins and public health responses, emphasizing the importance of accurate public health information and reflection on past actions
10:19: The hosts discuss the impact of public perception on trust in public health officials and the need for balanced scrutiny
12:07: Zoe reflects on the eroding trust in public health and ways to rebuild it
14:23: Steven stresses the importance of preparing for future health crises based on past experiences
15:45: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
After being diagnosed with a type of kidney disease called acute glomerulonephritis at the age of 10, Liz Schumacher learned how to find her voice and become her own best advocate for her treatment. Now through her work in health advocacy and health sustainability, Liz uses the lessons of resilience she learned through her diagnosis journey to inspire other patients to be their own advocates too.
Join Liz as she describes her health care journey, gives tips on strength and resilience, and shares how she advocates for other persevering patients like her.
Among the highlights in this episode:
01:47: Liz describes her initial diagnosis, and her emotions during her health journey through acute glomerulonephritis and four kidney transplants
03:43: Liz details the various ways in which her health care team made her feel included in her medical decisions, even when she was very young
05:42: Liz talks about how her experiences in the health care system have changed from when she was first diagnosed until now
08:05: Liz highlights the importance of talking openly with your providers about symptoms, side-effects, and general wellness so that your overall health is best managed
10:19: Liz describes how medical considerations from aging can be overlooked in treating people with chronic illness
11:55: Liz describes how her experience as a patient with a chronic illness plays a large role in her work as a health advocate
13:08: Liz talks about the necessity of building a support system, and how impactful her support system was during the COVID-19 pandemic
15:42: Liz details how the lessons of resilience she learned as a kid were important in her later as an advocate
18:35: Liz describes how her patient background can help her connect more closely with her clients and the people she works with daily
22:09: Liz highlights her work in health sustainability and details how her non-profit works to improve sustainable patient experiences
25:45: Liz closes by encouraging patients to persevere, be resilient, and fight for their healthcare to reach their health goals
26:26: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In this episode, we’re joined by gastroenterologist Dr. Brad Pasternak who talks about how his personal experience with ulcerative colitis inspired him to become a pediatric gastroenterologist. Dr. Pasternak realized he needed to advocate for policies that increase access to care after seeing his patients face denied treatments by insurance. He shares the tremendous effect that harmful policies have on the medical community, in delaying treatment for patients and getting in the way of shared decision-making. Finally, he leaves us with hope, discussing the advancements in treatment for inflammatory bowel disease.
Among the highlights in this episode:
01:23: Dr. Pasternak shares his personal journey into gastroenterology influenced by his own diagnosis with ulcerative colitis and his love for working with children
04:08: Dr. Pasternak discusses his recent shift towards advocacy, driven by the challenges posed by insurance policies and his desire to fight for better patient care
06:05: Dr. Pasternak recounts his advocacy efforts, including a significant meeting that led to a change in a health plan’s approval process for biologic treatments
10:27: Steven Newmark, Chief of Policy at GHLF, and Dr. Pasternak delve into the complexities of health policy advocacy, the slow process of legislative change, and the interactions with policymakers
12:14: Dr. Pasternak explains the burdensome process of prior authorizations and appeals in medical practice, highlighting its impact on medical professionals and patients
16:41: Dr. Pasternak outlines the advancements in patient outcomes over the years due to newer, more effective therapies that aim to heal rather than just treat symptoms
18:46: Dr. Pasternak encourages medical providers and patients to persist in advocacy and fight against inefficient and unjust medical policies
21:10: Dr. Pasternak mentions his local advocacy work, which often yields quicker results than federal efforts, emphasizing the importance of physician involvement in legislative processes
23:12: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
In honor of Lupus Awareness Month and Lupus Day of Action in New York City, we’re joined by New York City Council Member Shahana Hanif. Council Member Hanif shares about her life as a lupus patient and how her condition informs her work as a member of the city council. She underscores the importance of accessibility within New York City and the idea of creating infrastructure to help patients with chronic conditions live and age in peace.
Among the highlights in this episode:
00:41: Steven Newmark, Chief of Policy at GHLF, acknowledges Earth Day and discusses the contributions of plant life to medicine, highlighting how nature aids in treating various diseases
01:26: Zoe Rothblatt, Director of Community Outreach at GHLF, discusses the topic of biologic therapies and their potential use in treating COVID-19 by targeting the immune response
02:46: Council Member Hanif discusses her personal journey with lupus, starting with her symptoms at age 17 and her eventual diagnosis during an emergency room visit, which significantly impacted her life
05:45: Council Member Hanif reflects on her initial awareness of lupus through popular culture and the lack of broader discussions on chronic illnesses in her community, which motivated her to advocate openly about her condition
07:57: Steven asks Council Member Hanif about the transition from emergency care to regular treatment and how she navigated the health care system to find appropriate care despite initial challenges
11:33: Council Member Hanif explains how her personal experiences with lupus and health care barriers influenced her political career and advocacy efforts, especially concerning city infrastructure and public services to accommodate people with disabilities
14:57: Steven emphasizes the need for policies that support aging and accessibility in city environments
15:46: Council Member Hanif shares her ongoing commitment to lupus advocacy, including her participation in national lobby days and her efforts to ensure city legislation considers the needs of people with chronic illnesses
17:43: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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 her personal journey of being a caregiver.
Among the highlights in this episode:
01:00: Shonta explains her role at the Patient Advocate Foundation, detailing her personal and professional experience with health advocacy
01:35: Shonta describes the foundation's work in addressing the non-clinical, social, and financial drivers of health inequities, emphasizing the broad support they offer from insurance issues to basic living needs
02:40: Zoe Rothblatt, Director of Community Outreach at GHLF, discusses the significant impact of social and economic factors on health and probes further into patient experiences
03:04: Shonta highlights the importance of addressing various non-clinical factors that affect health outcomes and shares how the foundation helps patients navigate these challenges
07:34: Zoe reflects on the exhaustive nature of being a patient and highlights PAF's role in alleviating some of that burden
09:20: Shonta shares personal challenges as a caregiver and the systemic issues she faces even with her professional background
16:38: Zoe asks what can be done to help improve conditions for patients, prompting a discussion on policy advocacy and community support
19:47: Shonta offers advice to caregivers on maintaining their well-being and the importance of self-care
23:30: What our hosts learned from this episode
For more information about the Patient Advocate Foundation visit: https://www.patientadvocate.org/
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:00: Dr. Carlton shares his background as a gastroenterologist specialized in IBD and his presence on social media as a voice for queer health, highlighting his unique approach to discussing often taboo subjects
02:54: Adam Kegley, Associate Director of Global Partnerships at GHLF, and Dr. Carlton discuss the lack of conversation around sexual health and IBD in health care settings, emphasizing the importance of open communication between patients and providers, especially in the LGBTQ+ community
04:16: Adam explains the LGBTQ+ IBD Experiences Survey, a GHLF initiative to understand the specific health care experiences of LGBTQ+ individuals with IBD, aiming to improve inclusivity and access to care
If you are an LGBTQ+ person living with IBD, make your voice heard and take the survey at https://bit.ly/lgbtq-ibd
05:38: Dr. Carlton discusses the challenges faced by LGBTQ+ individuals with IBD, including the difficulty in discussing sexual health with health care providers, particularly in less accepting environments, and the impact of provider bias and misinformation
07:15: Adam notes the surprisingly low percentage of gastroenterologists who routinely inquire about sexual health in IBD patients
10:07: Zoe Rothblatt, Director of Community Outreach at GHLF, reflects on her own experience with Crohn's disease, noting the absence of discussions about sexual health with her gastroenterologist, and asks Dr. Carlton for advice on initiating these conversations
11:23: Dr. Carlton emphasizes the importance of finding knowledgeable and open health care providers, encouraging LGBTQ+ individuals with IBD to seek providers who are comfortable discussing and addressing their unique health care needs
11:58: Dr. Carlton stresses the importance of honest discussions about sexual health and the impact of IBD on one's sex life, as well as advocating for better health care for the LGBTQ+ community
15:30: What our hosts learned from this episode
You can find Dr. Carlton on Instagram and TikTok here: @doctorcarlton
Contact Our Hosts
Steven Newmark, Chief of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:37: Kristal discusses how attending an advocacy day in Washington, D.C. helped her find a supportive community and significantly impacted her obesity management journey
03:40: Kristal and Zoe Rothblatt, Associate Director of Community Outreach at GHLF, talk about the importance of community in managing chronic conditions. Kristal shares her struggles with obesity from her teens and the challenges she faced with weight management, including her experiences with polycystic ovarian syndrome, thyroid issues, and fertility problems, which compounded her obesity
07:48: Kristal shares her difficult decision to undergo bariatric surgery after trying various treatments for obesity and facing shaming from her primary care physician. Kristal highlights the transformative care she received from her obesity care team post-surgery and emphasizes the lifelong nature of managing the chronic disease of obesity
11:49: Zoe and Kristal discuss the need for compassionate health care, and the negative internalization of societal and medical bias against obesity
14:33: Kristal discusses the Obesity Bill of Rights, advocating for equal access to care and treatment for people living with obesity, and emphasizes the need to combat weight bias and discrimination
17:37: Kristal expands on her involvement in advocating on Capitol Hill for the Treat and Reduce Obesity Act (TROA), which aims to provide comprehensive care and access to FDA-approved medications for obesity
22:01: Kristal discusses the impact of media on the perception of GLP-1 drugs and obesity treatment and emphasizes the need for comprehensive, science-backed care for obesity as a chronic disease
25:10: Kristal encourages listeners to get involved with OAC and advocate for fair and unbiased treatment of obesity at all levels, highlighting various ways individuals can contribute to the cause
For more information, visit www.obesityaction.org
27:57: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:21: Jae shares the onset of their rheumatoid arthritis symptoms, detailing the progression of the symptoms, the challenges of everyday activities, and the breaking point that led them to seek medical help
04:25: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, highlights the common reluctance among patients to acknowledge the severity of their symptoms
04:36: Jae discusses their path to diagnosis from initial denial and misinterpretation of symptoms to the pivotal role of their primary care provider (PCP) in suspecting rheumatoid arthritis despite inconclusive tests
07:58: Zoe and Jae discuss the critical role of specialized testing in Jae's diagnosis, including Jae’s journey through rheumatology, the use of MRI, and the relief and realization brought by visual confirmation of inflammation
09:25: Jae discusses the emotional and physical toll of rheumatoid arthritis, touching on the impact of receiving a long-term diagnosis, the initial struggle with acceptance, and the subsequent panic and overwhelm
11:28: Jae talks about the importance of community and self-expression as they find solace and connection through online communities, blogging, and art, navigating the isolation and misunderstanding surrounding chronic illness
16:33: Jae addresses the challenge of additional diagnoses over the years, from fibromyalgia to small fiber polyneuropathy, and the importance of persisting in the search for answers despite medical skepticism
18:01: Jae shares their experience with small fiber polyneuropathy, including the struggle for recognition of their symptoms, the complexity of overlapping conditions, and the eventual diagnosis that connected disparate symptoms
25:44: Jae emphasizes the importance of documentation, advocating for oneself, and the power of having just one person who believes in your experience
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
02:31: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, expresses concern over nonprofits profiting from COVID misinformation, emphasizing the danger to public health and the unethical nature of profiting from misinformation
04:42: Steven Newmark, Director of Policy at GHLF, reacts to the report on flu vaccines among Medicaid fee-for-service patients, showing surprise at the findings which link pharmacy reimbursement to vaccination rates, suggesting policy implications to improve public health
GHLF and the IQVIA Institute for Human Data Science co-released a groundbreaking report that found a direct link between pharmacy reimbursement and flu vaccination rates among Medicaid-covered adults. Learn more: https://ghlf.org/ghlf-news/pharm-remibursement-vaccine-rates/
05:08: Zoe emphasizes the contagious nature of norovirus, advising listeners on precautions and the importance of hygiene to prevent spread, especially during peak seasons
05:32: Our hosts discuss the measles outbreaks in Florida, including the state's response, vaccine rates, and the implications of vaccine hesitancy
10:51: Zoe and Steven explore public health policies and historical vaccine mandates, referencing past measures to control measles outbreaks and the balance between individual rights and public health
12:03: Our hosts emphasize the importance of community protection through vaccination, highlighting how vaccines protect not only the individual but also those who are immunocompromised or unable to receive vaccinations
12:48: Zoe and Steven discuss the importance of advocating for laws reducing vaccine exemptions, emphasizing the need for stricter policies on non-medical exemptions to ensure community health and safety
13:30: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:39: Zoe, Associate Director of Community Outreach at GHLF, explains that over two million people have been dropped from Medicaid in Texas, highlighting the significant impact of pandemic policies ending and procedural issues leading to disenrollment
02:22: Our hosts share insights from a GHLF quick poll about clinical trials with 68% of the 2,000 respondents indicating they had not participated in a clinical trial
04:57: Our hosts address leaked information regarding potential changes to CDC isolation guidelines for COVID-19, emphasizing the confusion and lack of official statements
06:14: The conversation shifts to the challenges of accessing COVID tests and the inadequacy of paid sick leave in the U.S., highlighting how these factors complicate the management of COVID-19
08:46: Zoe reflects on the current state of COVID, including declining hospitalizations but lagging booster shot uptake, stressing the ongoing concern for those with chronic illnesses
10:05: Steven Newmark, Director of Policy at GHLF, speculates on the potential impacts of changes to CDC guidance on isolation and masks, considering the general public's adherence to such guidelines
13:44: Our hosts discuss the particular risks COVID-19 poses to immunocompromised individuals and the challenges they face in the workplace
15:25: What our hosts learned from this episode
To learn more about COVID guidelines and isolation, visit:
https://creakyjoints.org/living-with-arthritis/coronavirus/patient-perspectives/covid-guideline-isolation-patient/
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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, racism in health care, and ultimately, how we can come together as a community and advocate year-round. In this conversation, we delve into actionable steps for fostering inclusivity and driving future advancements in health care access and equity.
Among the highlights in this episode:
00:56: Steven Newmark, Director of Policy at GHLF, discusses the initiation of Medicare price negotiations as part of the Inflation Reduction Act, highlighting the significant step toward potentially reducing drug prices
02:05: Our hosts discuss the Supreme Court's decision to take up a case on COVID misinformation and its implications on the First Amendment, emphasizing the balance between free speech and public health
04:25: The topic shifts to health equity, race, and public health outcomes in honor of Black History Month, with Sarah Shaw sharing insights on the work GHLF is doing and the broader importance of the month
05:18: Sarah shares about her role at GHLF in amplifying BIPOC voices and her personal experience living with chronic illnesses
06:13: Our hosts and guest discuss the widespread impact of health disparities across different diseases and the importance of addressing racism and social determinants in health care
07:08: Sarah provides examples of the disproportionate burden of chronic diseases on the Black community, including the impact of COVID-19 and misdiagnoses due differences in skin color
10:56: Sarah shares her personal journey in finding health care providers who reflect her background and ethnicity, highlighting the challenges and the difference it made in her care
14:54: Steven reflects on the individual and systemic efforts needed to improve health care access and reduce disparities
17:39: The discussion concludes shedding light on the collective effort required to address health care disparities, emphasizing collaboration between patients, medical schools, and advocacy organizations
For more information, you can visit:
https://ghlf.org/black-history-month/
https://ghlf.org/chronic-illness/black-history-advocating-equity/
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:49: Steven Newmark, Director of Policy at GHLF, explains the role of PDABs, which are relatively new and aim to impose price controls on prescription drugs at the state level
01:04: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, and Steven discuss the high cost of health care in general, referencing The Kaiser Family Foundation data about the difficulties U.S. adults face in affording health care costs
03:38: Zoe and Steven discuss how high insurance costs can still be a burden, even for those with health insurance, affecting their ability to afford monthly premiums and deductibles
04:41: Steven explains the function of PDABs in reducing government and commercial market spending on prescription drugs and increasing affordability
06:50: Steven and Zoe discuss the selection process for prescription drugs reviewed by PDABs and the varying approaches of different states
08:12: Steven cautions that PDABs may not be the complete solution they appear to be, noting that they often lack direct patient perspectives in their decision-making process
09:50: Zoe shares a personal experience related to the high costs of medication, highlighting the challenges and stress associated with navigating health care costs
11:17: Steven emphasizes the critical role of patient advocacy in ensuring that the patient voice is heard and considered in health care policymaking, particularly in the context of PDABs
12:41: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:12: Zoe and Corey discuss the results of a quick poll on psoriasis treatments, highlighting the importance of patients communicating with their doctors about treatment effectiveness and exploring different treatment options
02:43: Corey explains the value of having multiple treatment options for various conditions and the significance of maintaining open dialogue with health care providers to find the most beneficial treatment
03:46: Zoe mentions GHLF’s upcoming webinar; “Itching to Know About Psoriasis? A HEROES Webinar About Hair, Skin, and Scalp Health” to learn about psoriasis, its symptoms, and how to create a supportive, stigma-free environment. The webinar will take place on Monday, January 29, at 4pm ET. You can register via this link: https://ghlf.org/itching-to-know/
04:04: Corey provides insights into the advocacy landscape for 2024, particularly focusing on the presidential election year and its impact on state government sessions
05:54: Corey explains the concept of Prescription Drug Affordability Boards (PDABs) and their role in evaluating medication cost-effectiveness at the state level
07:15: Zoe and Corey discuss how patient stories can influence PDABs' decisions on medication pricing and the importance of patient advocacy in these boards
09:22: Corey lists states involved in PDAB initiatives and encourages patients to share their medication experiences to inform state government decisions
12:52: The discussion moves to copay accumulator adjusters, with Corey outlining states with active legislation on this issue and advocating for patient involvement in legislative processes, regardless of personal experience with these policies
17:44: Our hosts discuss the HELP Copays Act, another significant federal initiative, and CMS's (Centers for Medicare & Medicaid Services) efforts to gather patient experiences for drug price negotiation
19:53: Zoe concludes by encouraging listeners to participate in advocacy in any form, highlighting the momentum around the Safe Step Act and the impact of patient stories in shaping health care policy
You can get in touch with our advocacy team at advocacy@ghlf.org
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:36: Our hosts discuss the resurgence of measles despite widespread vaccination, highlighting recent cases in a few states. They talk about the risk factors, symptoms of measles, and the effectiveness of the measles vaccine
02:50: Steven recounts his personal experience with a measles scare during college
03:46: Steven provides a historical overview of measles in the United States, including its status as a nationally notifiable disease since 1912, and the significant impact of measles before the vaccine era
05:13: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, explains the efforts leading to the elimination of measles in the United States by 2000 and raises the question of why measles is resurfacing now
06:16: Steven discusses the decline in MMR vaccine rates among schoolchildren and the rise in vaccine exemptions, linking these trends to recent measles outbreaks
08:09: Steven and Zoe delve into the decline of public trust in health authorities and the challenge of communicating the importance of public health successes that are often invisible
11:44: Steven explores the balance between individual rights and public health, emphasizing the collective responsibility in preventing the spread of diseases like measles
15:20: Zoe emphasizes the need for better education on public health and vaccine safety, and the role of supporting vaccine legislation at the state level
16:25: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:28: Steven discusses the political landscape of 2024, focusing on the upcoming election, and the primaries
03:05: Our hosts discuss the FDA's approval of Florida Governor Ron DeSantis' plan to import a limited set of drugs from Canada, covering the historical context, eligibility for receiving these drugs in Florida, and the specific drugs included
04:47: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, explains the next steps for Florida's drug importation program and highlights potential challenges, such as drug availability and compliance with FDA standards
06:13: Steven brings up CVS Caremark's decision to replace Humira with biosimilars on their formulary benefit
06:22: Zoe talks about the impact of CVS Caremark's decision on patients using Humira, including her personal experience and advice for patients facing a switch to biosimilars
08:51: Zoe and Steven discuss the winter respiratory virus season, including the rise in flu, COVID-19, and RSV cases, the effectiveness of flu vaccines, and personal strategies for staying safe during the peak of the respiratory virus season
13:03: Our hosts cover RSV activity and vaccine uptake, discussing the latest poll results from GHLF’s Patient Support Program, reasons for not getting vaccinated, side effects, and the importance of vaccines for prevention
15:52: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:06: The Health Advocates share their personal highlights from the year in advocacy, emphasizing the importance and impact of patient advocacy, particularly through the 50-State Network
03:05: JP Summers shares her insights on advocating for oneself, and the importance of patients taking immediate action upon noticing symptoms and being proactive about their health
06:51: JP discusses how to navigate the stigma that can come with a chronic illness like PMR and advises on how to effectively ask for help from family, friends, and health care providers
08:30: JP talks about the broader aspects of advocacy, including engaging with legislators and stakeholders
12:20: JP reflects on her conversations with PMR patients, highlighting the importance of community support and the power of sharing one’s story as a form of advocacy
22:44: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:50: Basmah recounts her diagnosis of Crohn's disease at age 16, highlighting her initial symptoms, challenges in understanding her condition, and the lack of resources at the time
03:20: Basmah discusses how she empowered herself with knowledge and lifestyle changes, leading to her remission since 2019
06:03: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, asks Basmah about the moment she realized her condition was chronic and how she started seeking resources
07:01: Basmah shares the holistic lifestyle adjustments she made after realizing the chronic nature of her condition, including dietary changes, and stress management
12:18: Zoe and Basmah discuss the importance of trial and error in managing lifestyle with a chronic condition, emphasizing the need to find what works best for each individual
14:14: Basmah offers advice to others living with chronic conditions, stressing the importance of education, community support, self-compassion, and enjoying life despite the challenges of chronic illness
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:07: Linda describes the onset of her PMR symptoms, likening them to feeling overexerted due to intense exercise
02:16: Linda details her initial struggle with PMR, emphasizing the severity of her symptoms that affected her entire body
03:34: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, inquires about Linda's experience upon visiting a rheumatologist for the first time
05:00: Zoe relates to Linda's experiences living with a chronic condition and notes the importance of having a reliable care team
06:47: Linda explains the nature of her PMR symptoms in detail, emphasizing her rapid improvement after starting steroid treatment
12:18: Zoe and Linda discuss the importance of sharing their health stories to help others
13:27: Linda advises listeners to be proactive in addressing symptoms, highlighting the importance of self-advocacy in health care
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
02:21: Mallory provides an overview of IBD, distinguishing it from IBS, and explains the characteristics of Crohn’s disease and ulcerative colitis (UC), including their autoimmune nature
04:47: Zoe discusses the importance of Crohn's and Colitis Awareness Week, sharing her personal experience with Crohn’s disease and emphasizing the community aspect in dealing with gastrointestinal (GI) conditions
06:26: Mallory addresses the challenges in diagnosing and treating IBD, including the time it takes to achieve an accurate diagnosis, individualized treatment plans, and the importance of achieving and maintaining remission
09:45: Zoe inquires about the trial-and-error phases in IBD treatment
12:14: Mallory outlines the various available treatment options for Crohn's and colitis, and the role of insurance and pharmacists in navigating these treatments
14:39: Mallory discusses biosimilars, their clinical equivalence to brand-name medications, and their potential to save costs for the health system and patients
16:24: Mallory highlights the role of supplements and vitamins in IBD treatment, emphasizing the importance of consulting health care providers before starting any new supplements to avoid interactions with prescription medications
17:22: Zoe and Mallory discuss the questions patients should ask their doctors about medications, emphasizing the importance of understanding risks and benefits to feel confident in managing their condition
18:39: Mallory explains the role of pharmacists in assisting patients with medication-related questions, insurance navigation and financial resources for copay assistance, encouraging them to utilize pharmacists as a resource and advocate
21:09 Mallory discusses how effective medication management can enhance the quality of life for patients with IBD
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:36: Our hosts share their Thanksgiving plans and favorite foods
01:05: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, reflects on the recent American College of Rheumatology conference, expressing gratitude for the sense of community and the opportunity to meet advocates and professionals in person
03:09: Zoe discusses the value of having meaningful conversations about health care advocacy at family gatherings, like Thanksgiving
03:52: Steven Newmark, Director of Policy at GHLF, elaborates on the importance of personal storytelling in advocacy, leading into a detailed discussion about copay assistance and its role in health care
05:18: Zoe explains the complications introduced by copay accumulator adjusters and maximizers, highlighting their impact on patients' financial responsibilities
06:30: Steven discusses the legislative progress made in protecting patient assistance programs, mentioning the role of state and federal advocacy in these developments
07:13: Zoe addresses the counterarguments from insurance companies and pharmacy benefit managers regarding copay laws, emphasizing the importance of supporting patient stories with data to strengthen advocacy efforts
08:32: Steven concludes the discussion by encouraging listeners to engage in advocacy and share their experiences with copay assistance, highlighting the practical impact of such initiatives
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
A podcast episode produced by Ben Blanc, Manager of Programs & Special Projects at GHLF.
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
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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
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:02: Dr. Wright outlines her background in rheumatology, and her involvement with the Association of Women in Rheumatology, emphasizing the importance of education and equity in managing rheumatic diseases
01:42: Dr. Wright describes PMR's symptoms, particularly affecting shoulders and hips, and clarifies that while PMR can be effectively managed, it is not necessarily curable
03:25: Dr. Wright elaborates on the typical progression from initial symptoms to diagnosis, highlighting the importance of blood tests in identifying PMR
04:44: Dr. Wright discusses the challenges in the diagnosis and treatment of PMR, stressing the often lengthy delay before patients receive appropriate care from a rheumatologist
05:45: Steven Newmark, Director of Policy at GHLF and Dr. Wright discuss the prevalence of PMR compared to other arthritis types
07:07: Dr. Wright offers advice for patients seeking help for PMR and emphasizes the importance of being attentive to changes in patient’s daily functioning and the need for timely consultation with a rheumatologist
09:26: Dr. Wright discusses resources available for patients coping with PMR and the importance of equity in health care
11:55: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
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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.
Among the highlights in this episode:
00:40: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, explains that the coverage for COVID treatments, including Paxlovid, will transition from government-based to commercial plans, highlighting uncertainties around patient copay amounts
01:07: Zoe emphasizes that uninsured individuals, as well as those with Medicare or Medicaid, will continue to receive Paxlovid at no cost until the end of 2024
01:49: GHLF remains steadfast in promoting accurate, evidence-based insights regarding both vaccines and vaccine research. We have gathered all of our vaccine resources in just one place at https://ghlf.org/vaccine-resources/
02:07: GHLF released a new podcast series called Informed Immunity, which tackles the most pressing topics in the realm of vaccines – from debunking myths to advocating for public health. You can find it here: https://ghlf.org/informed-immunity/
04:52: Steven and Zoe discuss the significance of health insurance, especially for those with chronic diseases
05:50: Zoe clarifies terms like premiums, deductible, copay, and coinsurance to help listeners better understand their insurance plans
06:46: Zoe emphasizes the need to recheck whether providers, hospitals, and medications are still covered under existing health care plans
07:46: Steven mentions a change where coverage under a parent's plan is now extended through the calendar year in which an individual turns 26
08:28: Steven and Zoe delve into the different tiers of Affordable Care Act plans and discuss the subsidies available based on income
09:35: Zoe shares a personal anecdote about her journey with health insurance, underscoring the complexities and learning curves faced by many
11:16: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
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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.
Among the highlights in this episode:
00:50: Nika gives an in-depth account of her health struggles, which began in college. She discusses her IgG4 symptoms like constant fatigue, joint pain, and spontaneous fevers, which baffled doctors for years
04:25: Nika emphasizes the importance of self-advocacy and the need for patients to have all their medical records organized
05:20: After years of suffering, a top rheumatologist identifies Nika’s condition, marking a significant turning point in her journey
05:35: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, asks about Nika's reaction to finally receiving a diagnosis, underscoring the emotional impact of living undiagnosed for such a long period
07:46: Nika delves into her decision to write about her health journey and shares her personal experience of opening up to coworkers, revealing the challenges of living with a hidden illness
09:14: Nika discusses the complexities of diagnosing autoimmune diseases and the significance of patients being proactive, keeping detailed records, and ensuring doctors are listening to their concerns
13:01: Zoe emphasizes the challenges of managing a chronic illness, including the constant advocacy required, the need for continuous learning, and the difficulties in communicating with doctors
14:00: Nika discusses her experiences during the pandemic, especially the disparity between how she and others perceived the impact of illnesses like COVID
18:34: Nika emphasizes the importance of advocacy, surrounding oneself with a supportive community, and recognizing the disease as just a part of oneself
20:02: What our hosts learned from this episode
This episode was made possible with support from Horizon Therapeutics.
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
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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.
Among the highlights in this episode:
00:36: Our hosts discuss the FDA's recent approval of the Novavax COVID vaccine, which is now available for individuals 12 and older and is targeting the Omicron subvariant
01:15: Steven highlights a significant court decision vital for patients who rely on copay assistance
03:33: Steven discusses a Supreme Court case called Acheson Hotels versus Laufer, and the right to bring lawsuits under the Americans with Disabilities Act (ADA)
06:19: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, emphasizes the need for businesses to be upfront about their accommodations for individuals with disabilities, highlighting the broader societal implications of the Supreme Court case [Acheson Hotels versus Laufer]
07:14: Steven touches on a potential Supreme Court case related to the mifepristone battle, underscoring the complexities of the legal landscape
08:35: Zoe and Steven celebrate the awarding of the Nobel Prize in Physiology or Medicine to Katalin Karikó and Drew Weissman for their groundbreaking work on mRNA vaccines
09:13: Our hosts discuss the history of RNA and its significance, laying the groundwork for understanding the importance of mRNA (Messenger RNA) technology
12:08: Zoe and Steven discuss the role of COVID-19 in amplifying the urgency of mRNA vaccine development
13:06: Zoe emphasizes the role of advocacy in pushing forward critical research, suggesting that vocal support can be a driving force behind scientific advancements
13:37 - Our hosts commend the transformative impact of mRNA technology on the world of vaccines, especially given its applications beyond COVID-19
14:52: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:53: Julie explains her role in rheumatology practice management. She shares how her office is able to help so many patients, and the burdens they face due to insurance companies and pharmacy benefit managers.
01:48: Julie delves into the complexities of how insurance companies determine which drugs to cover, and the challenges of non-medical switches
04:02: Steven inquires about the challenges of keeping up with yearly formulary changes
04:52: Zoe questions how the team communicates complex health insurance issues to patients, especially concerning non-medical switching or prior authorization delays
06:25: Julie discusses the scarcity of independent rheumatology offices, and the value of advocacy
07:46: Steven asks about advice for patients who may not have access to an advocate like Julie
09:49: Julie emphasizes that everyone is a patient and shares her driving focus of getting the right medicine for the right patient
10:58: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:38: Steven Newmark, Director of Policy at GHLF, shares that the vote for the PBM Transparency Act, which aims to increase transparency in PBMs to potentially lower health care costs, has been delayed
01:07: Zoe emphasizes the importance of incremental changes in advocacy
02:03: Ahead of Asthma Peak Week, Zoe provides tips for keeping asthma under control, emphasizing prevention, communication, and the importance of staying updated on vaccinations
03:06: Zoe shares insights from a recent ACIP meeting on the COVID vaccines, including remarks from the CDC director, Dr. Mandy Cohen, who commented on the current state of the pandemic and the tools available to combat various viruses
04:26: Our hosts discuss the renaming of the COVID vaccine from "booster shot" to "23-24 mRNA COVID-19 vaccine"
05:01: Steven elaborates on the specific features of the new COVID vaccine, who it's recommended for, and the shift from the previously used vaccine
06:17: The health advocates discuss the current state of the COVID pandemic, with a focus on hospitalizations, long COVID, and vaccine effectiveness
06:33: Zoe delves into the data presented during the vaccine meeting, particularly concerning hospitalizations among people with chronic conditions
08:16: Zoe provides details on the prevalence and impact of long COVID on various age groups, noting the significant limitations it imposes on daily life for many
10:41: Steven shares resources on where listeners can find a COVID vaccine near them, and reminds them to check insurance coverage when getting the vaccine
To find a COVID vaccine near you, you can visit www.vaccines.gov
11:00: Our hosts wrap up by addressing options for uninsured listeners, pointing them toward specific programs and resources
11:32: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:09: Corey provides background on the IRA detailing its main provisions and how it aims to impact patient access and affordability, especially for Medicare beneficiaries
02:21: Corey sheds light on the benefits patients have already started seeing, especially regarding insulin pricing and the ripple effect this has had in the commercial market
04:38: Corey explains the novel situation of the U.S. government having the ability to negotiate drug prices and the potential impacts of such a change on the health care industry
05:18: Steven Newmark, Director of Policy at GHLF, asks for clarity on why Medicare, being a significant payer, was historically unable to negotiate drug prices
07:48: Corey delves deeper into the intricate process of implementing the drug pricing negotiation provisions of the IRA, highlighting the current lack of transparency in the upcoming steps and emphasizing the need for stakeholder involvement in the process
09:03: Steven summarizes the ripple effect of Medicare decisions on the private health insurance space, pondering how a change in Medicare drug prices might affect the broader market
11:26: Corey explains that while the immediate impacts of the IRA might be beneficial, the long-term implications could affect drug development timelines and patient accessibility to new treatments
13:48: Join GHLF’s advocacy efforts and sign up for the 50-State Network to get involved
More information via this link: https://www.50statenetwork.org/become-a-50-state-network-advocate/
15:40: Zoe Rothblatt, Associate Director, Community Outreach at GHLF, underscores the tension between accessibility and cost-saving measures, particularly when it comes to patients with chronic diseases versus the general public
16:21: Steven offers a perspective on the IRA from the lens of patient advocacy, drawing a parallel between societal contributions and the health care world, explaining how everyone benefits from a society where patients can access vital medications
19:13: Corey encourages listeners, especially patients, to share their experiences and concerns regarding the IRA, as this feedback is vital for accurate representation and advocacy
20:41: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:52: Zoe explains that the Biden administration is set to announce a list of the first 10 drugs up for negotiation by Medicare in an effort to lower prescription drug prices, as a result of the recently passed Inflation Reduction Act
01:43: Steven Newmark, Director of Policy at GHLF, shares new CDC data that found asthma related emergency department visits were 17 percent higher than expected in the U.S. on days when the wildfires in Canada carried heavy smoke into part of the U.S.
02:41: Steven and Zoe discuss the recent FDA approval of a vaccine for RSV (Respiratory Syncytial Virus) aimed at protecting infants through vaccinating pregnant people in the latter part of pregnancy
03:22: Steven and Zoe talk about a new COVID variant, Pirola, which has been seen in multiple countries and has 36 mutations that is worrying experts
06:23: Steven and Zoe discuss the increase in emergency department visits and COVID hospitalizations in the southeastern states of the U.S., but note that it is still far below the levels seen in the past
08:26: Steven and Zoe discuss the upcoming CDC Advisory Committee meeting on September 12 to discuss recommendations for the next COVID vaccine
09:46: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:39: Zoe Rothblatt, Associate Director, Community Outreach at GHLF, explains that UnitedHealthcare, among other insurance companies, plans to drop prior authorization requirements for various medical procedures, in a move praised as it can alleviate administrative burdens on health care providers and delays in patient care
01:54: Steven shares good news from a new CDC report that indicates the percentage of U.S. adults living with long COVID has fallen to 6%
02:40: Zoe elaborates on the aforementioned CDC report, highlighting that a significant portion (26.4%) of those with long COVID are still experiencing considerable limitations in their daily activities
03:39: Our hosts transition into the main topic of rising COVID cases, especially with the emergence of the EG.5 variant
04:55: Steven breaks down insurance coverage options for at-home COVID tests after the end of public health emergencies, under Medicaid, private insurance, FSA, HSA, and for those who are uninsured
06:01: Steven advises listeners to check the expiration dates of at-home COVID tests, as they can range from six months to two years
07:00: Our hosts discuss the interpretation of at-home COVID test results and the relevance of the boldness of the test line to contagiousness
08:08: Should positive results from at-home tests be reported to the Health Department?
08:35: Steven outlines the recommended isolation protocols for those who test positive for COVID, starting from day zero, which is the first day of symptoms
09:26: Zoe emphasizes the importance of waiting until you feel well and consulting with a health care professional before ending isolation
10:25: Steven and Zoe discuss the availability of Paxlovid as a treatment option for COVID-19 and the importance of having a plan in place with your health care provider
11:56: Our hosts discuss the important question of how long people infected by COVID-19 might expect to stay ‘immune’?
13:30: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:36: Steven provides an update on the CDC panel's recommendation for an RSV shot for infants following the recent FDA approval
01:10: Steven and Zoe Rothblatt, Associate Director, Community Outreach at GHLF, discuss the significance of the monoclonal antibody shot being made available to a wider group of children
02:25: Steven touches upon drug shortages, specifically methotrexate
02:39: Zoe shares her personal experience with the shortage and provides advice for those facing similar issues
03:50: Steven emphasizes the importance of reporting any medication access issues to GHLF
05:08: Zoe stresses the importance of updated public health messaging around COVID
06:03: Our hosts dive into the state of COVID, noting recent increases in cases and the appearance of a new variant (‘EG.5’)
08:13: The possible implications of Americans losing Medicaid coverage on COVID case rates
09:03: Steven provides insights on EG.5's designation by the World Health Organization and its characteristics
10:00: Steven and Zoe talk about the upcoming COVID vaccine booster targeting the latest strains
11:57: “The COVID-19 modeling hub, which is comprised of eight academic teams across the United States just released their projections for the next two years. And they predict that hospitalizations and deaths will likely stay within last year's range, which is unfortunate, because it means we should expect to lose about 55,000 to 450,000 Americans depending on how things go due to COVID 19,” says Steven
13:17: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:38: The National Institutes of Health (NIH) is launching clinical trials for possible treatments for long COVID
01:44: Steven discusses the surge in people losing Medicaid coverage and the concerns raised by health officials regarding large numbers being dropped for procedural reasons
03:17: The Secretary of the Health and Human Services sent a letter to governors, encouraging support for Medicaid and electronic information for eligibility confirmation
04:02: Record high temperatures and heat exposure across the U.S. are affecting over 140 million people
06:03: Steven and Zoe Rothblatt, Associate Director of Community Outreach at GHLF, discuss the health impacts of heat waves, including heat-related mortality among those 65 and older
07:50: Our hosts address social inequalities exacerbated by heat waves, emphasizing the effect on poor neighborhoods, lower-income countries, and the importance of advocacy in addressing these inequalities
09:08: Steven and Zoe share advice on heatstroke, discuss the need for emergency rooms to incorporate climate into their thinking, and emphasize the international public health hazard posed by the weather, urging everyone to take precautions
11:09: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:41: Zoe and Conner discuss the recent approval of an RSV preventative shot for infants and vulnerable toddlers, and the FDA's considerations of approving a vaccine for pregnant women and adults 60 and older
02:18: Our hosts discuss the creation of a new White House office, the Office of Pandemic Preparedness and Response Policy (OPPR), headed by Dr. Paul Friedrichs, and its mandate for managing biological threats and pandemic preparedness
03:46: Zoe and Conner examine the Biden administration's move to improve insurance coverage of mental health treatments and the implications of the Mental Health Parity and Addiction Equity Act
05:46: Our hosts discuss the results from a recent GHLF COVID-19 Patient Support Program quick poll related to GHLF’s HEROES program, which educates stylists about skin and scalp conditions, and the positive reception it has received
07:09: Conner shares his experience from a recent advocacy road trip across the West Coast, highlighting the importance of patient perspectives in health care legislation
08:32: Zoe and Conner talk about active health care legislation in various states, mainly focusing on accumulator bills and non-medical switching bans
10:21: Our hosts review federal health policy, specifically the Safe Step Act aiming to reduce step therapy, which has recently gained traction in the House and Senate
12:25: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:57: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, asks Dr. Popovian to explain key terms and components of health insurance plans
03:16: Dr. Popovian explains why pharmaceutical companies have patient assistance programs, emphasizing their role in helping patients remain adherent to their therapies
04:22: Dr. Popovian discusses the emergence of programs called accumulators and maximizers, which can make it difficult for patients to meet their deductibles
06:39: Dr. Popovian talks about alternative funding programs that work with PBMs, mentioning the organization SaveOnSP and its role in securing patient assistance programs
09:48: Dr. Popovian shares that 19 states have passed legislation to protect patients against schemes like accumulators and maximizers, but he emphasizes the need for federal legislation to ensure wider protection
11:52: Dr. Popovian introduces GHLF’s analysis and free interactive tool to counter the argument that helping patients with their out-of-pocket costs will cause insurance premiums to increase, demonstrating that there's no correlation between the two
Learn more about the importance of patient assistance programs and access GHLF’s free interactive tool, visit: https://ghlf.org/copay-assistance-protection/
13:30: Dr. Popovian mentions that several legislative bodies have used the information provided by the tool to pass laws
14:16: Zoe suggests listeners can use this tool to advocate for laws that protect patients from high health care costs
14:58: Dr. Popovian discusses other policies that protect patients from predatory schemes, such as anti-steering laws
16:37: Dr. Popovian mentions an upcoming webinar on July 27, from 12pm to 1pm ET, where these issues and the tool available to help patients understand them will be further discussed
Register to the event here: https://us06web.zoom.us/webinar/register/WN_VoHE6wRqTA6a4DtkMhupxA
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:38: Steven discusses the ongoing drug shortages in the U.S., especially concerning cancer drugs and antibiotics
01:59: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, discusses the PAHPA, a crucial bipartisan legislation under reauthorization, which has guided the nation's biosecurity policy since 2006
02:21: Steven emphasizes the importance of being prepared and strengthening public health responses before a new pandemic hits
03:25: Zoe and Steven discuss the presence of malaria within the United States for the first time in two decades, and how the changing climate is likely contributing to this development
05:30: The crucial role of public health and the challenges it faces, particularly in gaining public trust and combating misinformation
07:30: Steven discusses the need for better communication in public health, emphasizing the importance of engaging in dialogues with those who oppose public health measures
09:17: Steven explains the importance of engaging with leaders to advocate for public health, encouraging listeners to join in these efforts
11:36: Steven and Zoe discuss a recent ruling restricting government administrators from communicating with social media platforms about misinformation online, underlining the impact on public health
14:12: Our hosts express their hope for the potential impact of the new CDC director and urging listeners to call their elected officials in support of pro-public health legislation
15:20: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:39: Steven shares news about Dr. Mandy Cohen's appointment as the next CDC Director
01:14: Steven details some of the responsibilities of the new CDC Director, including tracking the coronavirus and overseeing public health crises
01:29: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, raises the issue of public trust in the CDC and discusses the potential impact of a leadership change
02:00: Steven brings up the issue of millions of people being disenrolled from Medicaid following post-public health emergency procedures
02:31: Results from a recent GHLF COVID-19 Patient Support Program quick poll reveal surprising results on COVID-19 experiences and protective measures among GHLF’s patient community
03:48: Zoe introduces the main topic of the episode: the recent FDA meeting about vaccines, particularly the Vaccines and Related Biological Products Advisory Committee (VRBPAC)
04:53: Steven provides an overview of the committee's discussions on the need to update COVID-19 vaccines due to the virus's rapid mutation rate
07:41: Steven shares more updates, including the timeline for next-gen vaccines and the hope for COVID-19 to settle into a predictable seasonal pattern
08:55: Zoe emphasizes the rigorous testing and post-market surveillance of vaccines, refuting claims that they're untested on humans
09:25: Steven notes the improved global alignment on vaccine strategies, with the U.S., E.U., and WHO agreeing on targeting the Omicron XBB variant
10:19: Steven concludes the episode by sharing predictions about the accessibility of the updated vaccines, highlighting the importance of continuing communication on vaccine developments
11:44: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:05: Seth shares his personal journey with spondyloarthropathy, a form of arthritis, and his work from CreakyJoints to GHLF
04:19: Seth introduces the HEROES program, an initiative that GHLF is launching worldwide designed to equip and support licensed appearance enhancement service providers with information on common skin and scalp conditions, helping them to better support their clients living with these conditions
06:33: A survey conducted by GHLF found that stylists are familiar with conditions like psoriasis, eczema, and alopecia but lack comprehensive understanding and are keen to learn more
08:31: Seth talks about the enrollment process for the HEROES program and the ways the information will be delivered to the professionals who sign up
How to sign up for the HEROES Program?
- Visit ghlf.org/salonheroes
- Follow us in Instagram @GHLF_HEROES
- (Soon you will be able to subscribe to free text message updates too)
10:04: Seth encourages patients to help enroll their hair stylists and barbers into the HEROES program, underlining that sharing their experiences and directing the professionals to the HEROES page is a powerful form of advocacy that can make a significant difference
12:29: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, emphasizes how the HEROES program can help patients feel more comfortable and understood in salon and barber settings, ultimately reducing stigma and improving overall patient care
13:10: Seth discusses the importance of fighting stigma around skin and scalp conditions, and highlights the potential danger for individuals who ignore their symptoms due to lack of awareness
14:50: Seth emphasizes that stylists and barbers are essential community health ambassadors and should be aware of skin and scalp conditions
15:20: “Today's objective is a focused one on skin and scalp conditions, because tens of millions of Americans are affected by them,” says Seth
17:19: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:06: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, discusses the implications of the ongoing wildfires for people with respiratory issues
02:32: “Knowing your rights is really important. You might have protections through the Disabilities Act. Also, especially for asthma, having your preventative medications, your rescue meds nearby, and just making sure that you have the right supply of what you need, in case you encounter more breathing challenges during this time,” says Zoe
05:39: Steven discusses a CDC report on prescription medications, stating that many adults are skipping medication doses or delaying filling prescriptions due to cost
06:42: The FDA has revoked authorization of Johnson and Johnson's COVID vaccine, after the company requested its withdrawal since shots bought by the government had expired, and demand is limited
08:48: Steven provides insight into the recent bipartisan deal on the debt ceiling
11:30: The outcome of the debt ceiling negotiations do not directly affect programs such as Social Security, Medicare, and Medicaid
13:56: Zoe talks about the cumulative impact of the pandemic and wildfires on health and the ability to work
14:15: Steven discusses the possibility of a claw back (recoup funds) on unspent COVID aid as part of the debt ceiling negotiations
15:01: The importance of continued innovation in developing new and updated vaccines and treatments
15:12: Steven brings up potential cuts to funding for data modernization at the CDC and public health surveillance
16:31: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:23: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, discusses with Steven the impacts of the debt-ceiling deal on COVID relief funds
01:45: Although health care cuts are concerning, the deal as currently constituted preserves funding for NextGen (working on the next COVID vaccines) and no cuts to Medicare or Medicaid have been made
04:11: The U.S. Food and Drug Administration granted full approval to paxlovid, a significant tool in the fight against COVID-19
05:27: Steven shares that COVID-19 is seeing a decrease across all metrics in all regions of the United States, according to the most recent surveillance data
07:19 - Steven details the new guidelines from the CDC for improved indoor air quality to reduce COVID-19 transmission
10:48: Steven announces the World Health Organization's recommendation for a one-strain booster targeting an Omicron subvariant for the fall
12:53: Zoe emphasizes the importance of staying home and using masks when sick, particularly for the immunocompromised
14:14: Steven shares studies indicating the risk of long COVID after a second infection is greatly reduced, with the risk being one in 40 for those over 16 years old and one in 165 for those under 60 years old
16:05: Zoe and Steven discuss the upcoming news about the COVID fall vaccine
16:43: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:10: Steven Newmark, Director of Policy at GHLF, discusses the recent progress of the House Energy and Commerce Committee advancing health policies for price transparency and increased scrutiny over pharmacy benefit managers
02:34: Zoe elaborates on the effects of drug shortages on patients, leading to delays in treatment, inadequate dosing, or even lack of access to essential medications
03:16: Zoe and Steven discuss the causes of drug shortages, including manufacturing issues, supply chain disruptions, high demand, and regulatory challenges
04:56: What is the impact of the generic drug market on drug shortages and how various factors are contributing to the issue?
06:29: Zoe discusses potential solutions to the drug shortage issue, such as the Biden administration's efforts, the FDA's role, and relevant Senate bills
07:43: Tips: What individuals can do if they're affected by drug shortages or want to prepare for a potential shortage
09:58: Zoe encourages listeners to advocate and share their experiences, emphasizing the importance of pushing for legislation that promotes access to medications
10:51: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:47: "After over six years of hard work from patient and provider advocate communities around the country, the Safe Step Act was included in a piece of legislation that is passed out of a Senate committee and it has real momentum at becoming law," says Steven
1:29: Steven discusses what the next steps are for the Safe Step Act
3:02: Results from a recent GHLF COVID-19 Patient Support Program quick poll about the second bivalent booster shot show that 43% of respondents are planning to get it, 22% already got it, and 22% intend to discuss it with their doctor
5:03: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, highlights the importance of addressing social isolation as a public health issue
07:16: Steven discuses the rising levels of social isolation in the digital age despite the increased options for connectivity
10:29: The decline in participation in social organizations and how the trend contributes to increased social isolation and loneliness
11:31: Steven outlines the second major takeaway from the Surgeon General's report on loneliness, explaining that social isolation doesn't just affect individuals, but also affects community health
13:01: Steven emphasizes the individualistic nature of American society and how that might contribute to isolation
13:42: Our hosts discuss the six pillars identified in the report to help reduce loneliness and isolation
13:59: Pillar 1: Strengthen the social infrastructure. Create more communal spaces, social activities, and better infrastructure to facilitate access to these
16:04: Pillar 2: Develop pro-connection public policies that foster connections for areas such as transportation, education, and housing
16:19: Pillar 3: Mobilize the health sector. Train healthcare providers to identify people at risk of isolation and better equip them to connect patients with the social support they may need
17:01: Pillar 4: Reform digital environments. Require transparency from large tech companies and establish safeguards to protect vulnerable populations from the negative effects of social media
18:44: Pillar 5: Deepen our knowledge. Support academic research and public information campaigns to improve our understanding of the links between isolation and health
19:36: Pillar 6: Cultivate a culture of connection. Reinforce the values of connection and reduce the polarization that can lead to people feeling more isolated
22:32: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:42: The World Health Organization has announced that it is ending the COVID global health emergency
2:11: “The federal government has been supplying COVID vaccines, including boosters free of charge to everyone regardless of insurance. Now, this is not expected to change just yet, but it may change if the government does not replenish its stockpile of vaccines, not to mention its funding for vaccines. So something that probably can't be counted on, particularly the latter,” says Steven
2:55: The Department of Health and Human Services has announced a $1.1 billion public-private partnership to maintain COVID vaccine access and treatments for the uninsured through December 2024
3:56: “Similar to the vaccine stockpiles, when the supply [of antivirals] runs out, manufacturers will set prices for the medications and any additional charge to consumers will depend on individual's health care plans,” says Steven
6:37: Private insurance companies will no longer be required to cover both at-home and lab COVID tests for free
08:06: With the end of the public health emergency, some restrictions around telehealth that were loosened during the pandemic might return
09:08: The CDC will focus less on case rates and more heavily on hospital and death data in the post-emergency phase
10:18: The CDC will maintain travel surveillance, testing wastewater on airplanes to spot new incoming threats
12:20: As the emergency order ends, it's important to be extra mindful about insurance coverage and to check in with insurance providers before getting a vaccine or a test
14:12: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:16: Steven Newmark, Director of Policy at GHLF, discusses the current debt-ceiling debate in the Senate and its impact on health care policies
3:52: Steven discusses a Republican plan for requiring more low-income Americans to work in order to receive government benefits, primarily food stamps and Medicaid
6:00: Steven explains the next steps for the debt ceiling debate, which involve negotiations in the Senate and potential impacts on the economy and health care
8:07: Steven shares positive news about PBM reform gaining traction in Washington, with Senators Bernie Sanders and Bill Cassidy working on a bipartisan legislative package
10:36: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, discusses the importance of transparency and the impact of the proposed PBM reform legislation
12:17: The FDA is considering the approval of two RSV vaccines for older adults from pharmaceutical companies Pfizer and GSK
15:45: Adam provides some background on osteoporosis, a bone-thinning disease that can lead to fractures and other life-changing effects
16:39: Angel shares her motivation for working on GHLF’s osteoporosis program, emphasizing the importance of education and preventative measures
17:57: Adam talks about the prevalence of undiagnosed osteoporosis and the importance of DEXA (bone density) scans for those at risk and those recently diagnosed
22:09: An introduction to the Strong Bones & Me program, GHLF's new global osteoporosis initiative that focuses on education and support for those affected by the condition
24:11: Angel and Adam talk about working with global partners to create accessible, multilingual resources for osteoporosis education
26:33: Tune in for the osteoporosis and bone health-themed live #CreakyChats on Twitter, scheduled for May 15th at 7pm ET
26:59: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
0:08: Zoe summarizes the episode’s main topics
0:57: The FDA recently authorized an additional round of bivalent boosters for those 65 and older and those with weakened immune systems
2:14: Steven Newmark, Director of Policy at GHLF, discusses the Supreme Court preserving access to the medication mifepristone, allowing the drug to remain broadly available while litigation plays out in a lower court
3:15: Results from a recent GHLF COVID-19 Patient Support Program quick poll show that 75% of respondents had been moderately or very stressed due to their chronic illness in the past seven days
5:17: Steven and Zoe discuss waning immunity and hospitalization rates related to COVID-19, focusing on the higher rates in the 65+ age group
6:23: Our hosts break down the ACIP’s support for transitioning from the monovalent primary series to the bivalent shot for mRNA vaccines
8:02: Steven explains the ACIP's idea for a single annual COVID-19 vaccine dose, similar to the flu vaccine, to help with waning immunity
10:49: The importance of vaccine accessibility for both immunocompromised individuals and the general population to help stop the spread of COVID-19
12:39: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
0:08: Zoe summarizes the episode’s main topics
1:09: Corey shares the latest advocacy news, including upcoming visits to D.C. and state capitals in Wisconsin and Ohio to support reforms for pharmacy benefit managers and copay accumulator adjuster bans
2:01: Join GHLF’s advocacy efforts and sign up for the 50-State Network to get involved
More information via this link: https://www.50statenetwork.org/become-a-50-state-network-advocate/
3:21: Mifepristone Update: U.S. Supreme Court Justice Alito temporarily blocks lower court rulings on mifepristone, giving justices more time to review the case
4:24: mRNA Cancer Vaccines: The promising findings of a Moderna-Merck mRNA vaccine in treating skin cancer, cutting the risk of death or recurrence by 44%
5:32: Precision Medicine: Zoe and Corey discuss the potential of precision medicine in the treatment of chronic illness
6:22: Insurance Expansion for DACA Recipients: The Biden administration's plan to expand access to Affordable Care Act and Medicaid coverage for DACA recipients
8:10: The importance of advocating for increasing access to health care as emergency health orders end, potentially leaving millions without coverage
8:54: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
0:06: Steven summarizes the episode’s main topic
1:18: The FDA is expected to announce a second omicron-specific COVID booster for people who are 65 and older as well as those with weakened immune systems
1:59: Results from a recent GHLF COVID-19 Patient Support Program quick poll show that 47% of respondents exercise daily or weekly
4:26: A federal judge in Texas issued a ruling to revoke the FDA's 23-year-old approval of the abortion pill mifepristone
5:30: “If this decision is upheld, it could really shake the very framework of patients’ reliance and doctors’ reliance, and the pharmaceutical industry’s reliance on the FDA’s pathways for developing new drugs,” says Steven
7:12: “This ruling is coming in and contradicting all that work that the FDA does... The case is probably going to go to the Supreme Court and as someone living with chronic illness… it genuinely scares me that judges and people in this country are able to fight and undermine the FDA like this, especially as someone who relies on medications to keep me functioning in everyday life,” says Zoe
10:00: In parallel to the Texas ruling, Democratic attorneys general from 17 states and the District of Columbia challenged extra restrictions that the FDA imposes on mifepristone
11:55: The Texas ruling could violate the Constitution’s commerce clause, which prohibits states from impairing interstate commerce, and the supremacy clause, which says that federal laws have priority over conflicting state laws
13:11: “Rulings are made by judges and judges are humans. Humans don't always get things right, and that's why… there are appellate courts to sometimes overrule lower courts and so forth” says Steven
15:38: “There may come a moment where there's an opportunity to insert yourself in the litigation itself as an amicus curiae, which means friend of the court. Those are individuals who may not be litigants in the case but have some special concern about the outcome of how that case could affect them going forward. So that could be an area where groups like the Global Healthy Living Foundation might insert themselves and might be seeking patients to help with that,” says Steven
16:18: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:16: Steven Newmark, Director of Policy at GHLF, discusses the issue of copay accumulators and their detrimental impact on patients
3:05: “I think that there are still a lot of elected officials and staff who are unaware of what accumulators are, who don't get to hear the patient perspective enough. And I think it says to us; we have more work to do. And to anyone listening, it's important to continue to play a role and to let folks, policymakers, and elected officials know what it's like to live with a chronic condition, and when dealing with accumulators, the affordability issues at play,” says Steven
3:53: GHLF’s efforts to advocate for the Safe Step Act and the Help Copays Act
5:17: Our hosts discuss JP Summers, Patient Advocate and Community Outreach Manager at GHLF, perspective and experience testifying about co-pays as a patient and advocate in Austin, TX
7:01: “In California, we focused on a legislation that helps with co-pay accumulator adjusters. And what was so interesting was that two different legislative offices said that with GHLF coming with patients, it was the first time they ever heard directly from patients about these bills,” says Zoe
8:13: Why are millions of people potentially going to lose access to Medicaid?
8:21: “During the pandemic, the government suspended procedures that would remove people from Medicaid rolls. In the past, people would regularly lose their Medicaid coverage if they started making too much money to qualify for the program, or if they moved out of state,” says Steven
9:04: “The good news is that not all ineligible people will be dropped at once. States have different timelines. Most states are expected to take between nine months and a full year to complete the verification process [in regard to eligibility for Medicaid] so there's a good amount of time to check in on what's happening,” says Zoe
10:55: “Insurance is a lifeline and it's scary to potentially lose that access… If you do change plans, always remember to check your doctor’s coverage and prescription coverage to make sure that you'll be able to continue your care as you were,” says Zoe
12:53: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:56: Steven and Zoe kick off the episode by giving an update about the Cochrane review on the effectiveness of masks
03:03: Zoe and Steven introduce today’s main topic, a look back at COVID at the three-year mark since the World Health Organization declared COVID-19 as a pandemic, and run through some of the changes we’ve seen since that time
05:16: Zoe takes a look at COVID statistics from the past three years
06:58: To add some historical context, Zoe and Steven look at how events transpired during the 1918 Flu Pandemic
08:50: Zoe and Steven look at vaccines rates in the United States
11:56: With COVID protocols ending, Zoe and Steven take a look at the effect COVID has had on the chronic illness community
13:53: As new information is being found about long COVID, Zoe and Steven catch us up on the latest findings
16:59: Zoe and Steven look back at the silver linings from the past three years
18:08: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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."
Among the highlights in this episode:
00:52- Zoe and Steven kick off the episode by introducing this week’s topic about the CDC’s external advisory committee’s recent meeting focusing on COVID-19 vaccines and boosters
01:47- Steven shares that the data discussed in the meeting prove that the COVID-19 vaccines continue to be safe
02:15- Steven and Zoe discuss another finding from the meeting, that hospitalizations with COVID-19 were from patients who went to the hospital for COVID-19 treatment, as opposed to entering with another ailment and being diagnosed with COVID secondarily
03:23- Steven and Zoe look at the numbers for COVID hospitalizations amongst children, which showed that 50 percent did not have underlying conditions
04:35- Zoe discusses the CDC’s risk benefit analysis for giving adolescents the COVID-19 vaccine
05:22- Zoe and Steven talk about the different scenarios adults have for getting their booster
08:15- Steven and Zoe close the episode by sharing what they learned
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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.
Among the highlights in this episode
00:57- Zoe and Steven kick off the episode by talking about the theory that COVID leaked from a lab in Wuhan, China
02:43- The FDA has recently authorized the first over-the-counter at-home test for flu and COVID
04:02- FDA advisors have voted to recommend the approval of the country’s first RSV vaccine
05:28- Zoe and Steven talk about today’s big news topic, the Cochrane meta-analysis that states masks aren’t as effective as once thought
06:51- Steven walks us through some of the intricacies of the study
08:02- Zoe explains why the results of this study may not be what it seems
09:59- Steven shares the details of the experiments that determined the effectiveness of masks against COVID-19
12:13- After looking at studies that show the effectiveness of masks, Zoe and Steven discuss the shortcoming of the Cochrane Study
16:40- Steven and Zoe share their learnings from today’s episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
00:59- Steven and Zoe kick off the episode by discussing the Help Ensure Lower Patient Copays Act that was introduced in the House of Representatives
02:41- Zoe and Steven discuss a new study which finds that the risk of hospitalization from COVID among people previously infected is 89 percent to 90 percent lower for at least 10 month post-infection
04:02- In honor of Heart Health Month, Steven shares heart healthy tips for you and your loved ones
05:39- Zoe introduces today’s episode guest, psoriatic arthritis patient and advocate Eddie Applegate, who shares his story
08:16: Eddie shares his story of becoming an advocate and being open about his psoriatic arthritis
11:07- Eddie speaks about the support system he’s had along his journey
12:50- Zoe asks Eddie to share a time when he felt that a change was needed and advocated for himself
14:33- Eddie shares tips for those who are nervous about advocating for themselves
17:35- Zoe and Eddie talk about finding a new rheumatologist
20:38- Zoe and Steven share what they learned from this week’s episode
See omnystudio.com/listener for privacy information.
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 shinning 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: ghlf.org/black-history-month
Among the highlights in this episode:
01:02- To kick off the episode, Steven tells Zoe about the Amicus Brief filed by GHLF and 28 other organizations, which aims to help the courts see how copay accumulators negatively impact patients
03:20- Steven and Zoe talk about the FDA’s new recommendations for clinical research for developing cannabis and cannabis-derived human drugs
05:52- As New York State ends the mask mandate in health care facilities, Zoe and Steven discuss the implications that has on those who live with chronic illness
08:32- With February being Black History Month, Zoe and Steven talk about the health disparities that exist in our current health care system
10:51- Zoe shares a recent study that says experiencing racism and discrimination can contribute to inflammation in Black patients
12:57- Steven and Zoe talk about the importance of amplifying and empowering Black patient voices at advocacy events, such as Headache on the Hill
14:11- Zoe reads quotes from the GHLF Black, Indigenous, People of Color (BIPOC) Headache on the Hill Group
15:32- Zoe and Steven share what they learned from today’s episode
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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.
Among the Highlights in This Episode:
01:03- Steven and Zoe introduce today’s guests, Dr. Mark Rosenberg and Maria Thacker Goethe from the Center for Global Health Innovation
03:15- Dr. Rosenberg tells us about the Building Better Ancestors Project and shares the nine key lessons the Center for Global Health Innovation learned from the eradication of smallpox
10:13- Maria shares with Steven and Zoe how the nine lessons from smallpox play a part in the center’s mission of using innovation to achieve health equity
15:16- Dr. Rosenberg gives us insight into how the nine key lessons will impact the patient community and the general population
18:49- Maria shares her hopes that the nine lessons will be picked up by public health leaders on a local level and by innovator
20:24- Dr. Rosenberg shares a quote from his late friend and global health pioneer, that the source of all evil in the world is the belief that some lives are worth less than others
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.orgZoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email.
See omnystudio.com/listener for privacy information.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
01:24- Steven and Zoe introduce their first topic, President Biden informing Congress that he will be ending the United States’ COVID-19 Public Health Emergency in May
02:39- Zoe and Steven explain what the ending of the Emergency status means for the public at large and the implications it may have on the health care system
05:17- Zoe shares the results of the latest COVID-19 quick poll regarding the resources our community wants to have
06:18- Zoe and Steven discuss the FDA no longer recommending Evusheld as a COVID preventative
07:36- The CDC has shared an action plan for those who have weakened immune systems
10:30- As the need for an annual COVID vaccine increases, Zoe and Steven discuss the FDA’s vote to approve an annual vaccine
13:17- Zoe asks Steven how the FDA would go about implementing an annual COVID vaccine
15:36- We look how the rest of the world is planning to develop an annual COVID vaccine
16:34- Steven and Zoe share what they’ve learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email.
See omnystudio.com/listener for privacy information.
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."
Among the highlights in this episode:
1:59: As of today, only 15.3% of Americans have received the updated booster
3:20: A recent online study published by the CDC Morbidity and Mortality Weekly Report (MMWR) found that the most common reasons for people not getting a bivalent booster were lack of awareness about eligibility (23.2%) or of vaccine availability (19.3%) and overestimations of their own existing immunity from previous vaccines or infections (18.9%)
3:50: “The lack of awareness about eligibility or vaccine availability is so high… It shows that we live in a little bit of a bubble, because to my mind, I see notices everywhere,” says Steven Newmark
4:13: “I went home to New Jersey a few weeks ago, and I did notice a lot more signage about COVID compared to here in Nashville… If you go into a pharmacy, of course, there are signs about shots available here but it's not broadcasted. We don't have a subway system for example [in Nashville] and that's where a lot of signs are in New York… Here's my bubble,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF
5:34: “I think that we have to consider where we're putting messages that we're meeting people in their everyday life, and not creating an extra burden. Because often, 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,” says Zoe Rothblatt
5:52: After participants [to the MMWR survey] were given information on eligibility and availability, 67.8% of those who hadn't gotten a booster said that they would pursue one; a survey one month later showed that 28.6% of these participants had actually done so
7:14: In the latest episode of Healthcare Matters (episode 7), hosts Dr. Robert Popovian and Conner Mertens discuss the enhanced role of pharmacies in the overall immunization process in the U.S. and how important of an access point pharmacies are for people
You can listen to the episode via the link below: https://ghlf.org/healthcarematters/#episode27
8:22: The FDA is considering a shift in COVID-19 strategy: moving away from requiring two shots of the original vaccine in order to be able to get the updated bivalent booster and to adopt instead a strategy similar to the annual flu shot where people could simply get whatever the latest version of the vaccine is annually
9:18: For immunocompromised patients, the FDA would recommend two annual doses of the shot
9:28: “Myself like many had to hold my regular injections that treat my arthritis and Crohn's for the COVID shot, so doing that [booster shot] twice [annually] is a huge setback in health,” says Zoe Rothblatt
11:02: There is no vaccine yet to prevent RSV, although there is a medicine that can help protect some babies at high risk for severe RSV disease (it is very costly and requires monthly injection), and another is in development for infants that would last for the whole season
12:41: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:13: 2022 marked a record for Affordable Care Act enrollment with about 16 million people having enrolled in the health insurance platform
2:05: The CDC expands airport screening: All air passengers 2 years of age and older originating from China will be required to get a COVID-19 test no more than two days before their departure, regardless of their vaccination status
3:55: Dr. Falasinnu elaborates on her career and what led to her research at the Stanford School of Medicine
5:55: Dr. Falasinnu shares the personal story behind her journey to becoming a lupus researcher
6:51: “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%... to 10%, between 2012 and 2017,” says Dr. Falasinnu
7:35: “The issues of the lack of diversity in clinical trials is not unique to rheumatology, and we see it in cancer and cardiovascular disease trials as well,” says Dr. Falasinnu
8:48: Dr. Falasinnu shares how we can adapt traditional trial recruitment frameworks while acknowledging the challenge of engaging the lupus patient community as a whole
9:53: “Life with children can be very busy, and schedules of parents may not permit the addition of a clinical trial. I've been there,” says Dr. Falasinnu
11:05: Dr. Falasinnu discusses the study she worked on that aimed at estimating the burden of chronic overlapping pain conditions in patients with autoimmune rheumatic diseases
14:08: What health and patient advocacy mean to Dr. Falasinnu
16:39: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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."
Among the highlights in this episode:
2:33: As society moves on and fewer precautions are being taken to fight the COVID-19 pandemic, flu season started early in the U.S. this year
3:28: Cases of respiratory syncytial virus, or RSV, have been declining
3:56: At its peak, in mid-November of 2022, new RSV hospitalizations reached an all-time high of 70 children hospitalized per 100,000 infections. Historically, peaks have been anywhere between 26 and 52 children per 100,000 infections
5:02: “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,” says Steven Newmark
5:58: There is a high possibility that a second flu strain could be coming our way
7:37: Omicron subvariants continue to spread, especially the subvariant XBB.1.5 which seems to be circumventing immunity from vaccination and infection
9:38: “I know our chronic disease community 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 as we're in this new year, and people continue to get over COVID, I just want to say that… we're here for you and we understand you and we're going to keep talking about and providing tips and health advocacy for… fighting this virus together!” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF
10:32: A recent study shows those who were vaccinated and received a bivalent booster have an 18.6 times lower risk of dying from COVID-19 compared to those who were unvaccinated. The risk of infection is also three times lower when people are vaccinated.
11:05: Monoclonal antibodies, including Evusheld, have lost potency against new omicron subvariants
12:18: “There are a lot of people out there getting sick, and there is still plenty of winter season left. 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,” says Steven
12:46: The impact of the new congress on legislation work
13:12: The Safe Step Act remains one of the legislative priorities for GHLF in 2023
15:15: Could the results of the mid-term elections have an impact on COVID funding?
16:37: To get involved with our advocacy work, visit 50statenetwork.org or send an email to advocacy@ghlf.org
17:49: More on GHLF’s advocacy work at the state level
18:46: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
2:12: Four copay accumulator bills passed in New York, Washington, Delaware, and Maine in 2022
2:29: “[Copay accumulator 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,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF
2:42: A non-medical switching bill passed in New York in 2022. “[The non-medical switching bill passed in New York] will prohibit health insurance from switching stable patients off their current medications to another medication,” says Zoe
3:14: Two step therapy bills passed in California and Massachusetts in 2022
3:42: “[Step therapy bills] provide protections against the insurance practice of requiring you to try and fail on a different medication before you could have the one originally prescribed,” says Zoe
4:02: Patients also received protections against surprise billing
4:48: “I would say a big thank you to our patients who helped us get these pieces of legislation passed,” says Steven Newmark
5:10: Our hosts share the highlights discussed on The Health Advocates in 2022
7:27: The takeaways from conferences and other events attended by our hosts this year
8:52: “We've learned that we really need more representation in advocacy. It's often the same group of people showing up and we need more diverse voices. And 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,” says Zoe
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
2:41: Amanda Ledford shares the importance of using a specific ICD-10 – or diagnosis code – for nr-axSpA, and the challenging journey to get the application for the code creation approved
4:37: “With continuing advocacy from UCB, patient groups, [and] professional societies, a new and specific code for nr-axSpA became effective October 2021,” says Amanda
6:20: “Getting disease codes like [ICD-10] is key for people to get the accurate diagnosis and then get treatment,” says Ricky White
7:09: Ricky provides his insights on the access issues and barriers he and other patients encounter in the U.S. when it comes to getting the medication that works best for them
8:55: Amanda shares the efforts to get affordable and equitable access to care for all patients
9:49: “UCB is working with a coalition of patient groups, including GHLF… to advocate for step therapy override legislation at both the state and federal levels,” says Amanda
10:38: Over 30 states have enacted step therapy override legislation so far
11:24: Amanda discusses treatment affordability and explains the concept of copay accumulators
13:01: “16 states and Puerto Rico have already passed some form of copay accumulator legislation at the state level,” says Amanda
14:25: How individuals and local patient organizations can defend treatment affordability and help pass legislation at the state level
15:17: “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, or writing an op-ed about your experience” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF
More information here: www.50statenetwork.org
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:07: Listener comment
1:42: “44 states are reporting high or very high flu activity,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF
2:15: The CDC reports an estimated 8.7 million illnesses, 78,000 hospitalizations, and 4,500 deaths all due to the flu so far this season
3:17: Mpox is expected to no longer be considered a public health emergency in the U.S. as of Feb. 1, 2023
4:13: Results from a recent GHLF COVID-19 Patient Support Program quick poll show that 65% of respondents say they have been diagnosed or tested positive for COVID and 44% of that group have been diagnosed with long COVID
5:32: “China has… begun lifting some of its COVID restrictions, even though the government’s ‘zero COVID’ policy officially remains,” says Steven Newmark
6:16: More than 20 Chinese cities, including major cities like Beijing, have ended the requirements for negative COVID tests to use public transportation and enter public venues, while some residential compounds now allow infected residents with special needs to quarantine at home instead of being sent to a centralized quarantine
7:47: There is a reported 40,000 new COVID-19 infections per day in China
8:24: “[China’s] vaccines are called Sinovac and Sinopharm. These are inactivated vaccines that are just not quite as effective. These are vaccines that were developed early in the pandemic,” says Steven Newmark
10:40: “The Chinese government is refusing to accept the boosters that are Omicron specific, even though that's the dominant strain,” says Steven Newmark
12:14: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:40: Listener comment
2:39: Twitter is no longer enforcing its COVID misinformation policy
3:50: “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,” says Steven Newmark, Director of Policy at GHLF
4:13: GHLF has developed a free program for patients and their families to access updated and verified information, community support, and other resources tailored specifically to their health and safety. You can enroll in the program here: https://ghlf.org/coronavirus-patient-support/
5:08: In a recent statement, the National Institutes of Health (NIH) noted that COVID-19 subvariants are likely to be resistant to Evusheld, a preventive COVID treatment for people who are immunocompromised
5:56: As treatments like Evusheld become less powerful in preventing COVID-19, other measures like getting the new bivalent vaccine booster are even more crucial for immunocompromised patients
6:06: December 1 through December 7 marks Crohn’s and Colitis Awareness Week
8:06: Priti Krishtel shares what drew her to found I-MAK and describes the mission of the organization
9:33: “We were working in the Global South… in middle income countries that have really huge populations living in poverty… And there we saw a lot of wins,” says Priti Krishtel. “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.”
12:22: I-MAK’s Participatory Changemaking tool (PCM) and an explanation of how it brings together members of affected communities as well as leaders from government, academia, and the private sector to create new thinking about the future of the patent system
14:21: Priti Krishtel shares a memorable patient interaction and its impact on her
17:09: To learn more about what's happening with patent reform, you can sign up for I-MAK’s newsletter at i-mak.org
17:39: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
2:35: “It feels like a lot of the general public is ‘back [to] normal life.’ Mask mandates have been lifted, work from home employees returned to offices, and many just resumed pre-pandemic ways generally. And I'll say it… things aren't cut and dry for those of us living with chronic illness,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF
2:55: “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,” says Steven Newmark
3:22: Steven Newmark shares helpful ways to initiate conversations at the table about health risks posed by COVID-19 and other infectious diseases
5:00: More on how to establish productive conversations about the importance of vaccination with family and friends
6:47: The importance of being an advocate
Become a 50-State Network advocate: https://www.50statenetwork.org/become-a-50-state-network-advocate/
7:13: Zoe Rothblatt shares her plans for the holidays
7:32: Steven Newmark shares his plans for the holidays
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode:
1:17: Listener comment
2:12: What is the American College of Rheumatology (ACR) Convergence and why does it matter?
2:35: The impact of ACR on the patient community
3:16: There is currently a shortage of rheumatologists in many countries and regions around the world
3:50: “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,” says Steven Newmark, Director of Policy at GHLF
4:55: Another takeaway from the conference is the reminder that patients and health care workers are still facing COVID-19
5:43: “Patients are invited to submit a poster about an intervention that helped them improve their health… These patient perspectives are a really important part of a conference that's geared towards doctors… 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,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF
8:09: Stephanie Aleite presents her poster: Engaging with the Spoon Theory: How I Make Decisions Using a Cost-Benefit Analysis that Works to Improve My Mental Health While Living With RA
8:16: “The intervention that I created… is a cost benefit analysis… to help patients increase the connection they have with their support system,” says Stephanie
13:09: Ashley Krivohlavek presents her poster: Please Hear Me: How Effective Provider-Patient Communication Improved My Psoriatic Arthritis
16:03: “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,” says Ashley
18:26: Eileen Davidson presents her poster: From Devastated to Empowered: How Patient Engagement in Research Changes Lives
19:26: “I think it's really important for clinicians to understand that patients can get involved like this because often medical appointments are infrequent, there are long waitlists, you won't necessarily find the answers that you need to, but this is an avenue [ACR] where you can get information and resources for living with your condition outside of the doctor's office,” says Eileen
20:41: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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."
Among the highlights in this episode:
2:05: “There are over 100 types of arthritis and… 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 number two: to provide a sense of community for those living with the condition as they hear from us and from others,” says Steven Newmark, Director of Policy at GHLF
2:59: Dr. Stark describes what non-radiographic axial spondyloarthritis (non-rad AxSpA) is and what makes it a particularly challenging disease
4:32: There is a misconception that non-rad AxSpA is a milder form of arthritis but for many patients that's just not the case, according to Dr. Stark
5:05: “There's clearly a lot of room for improvement in the journey to diagnosis with non-rad AxSpA,” says Steven Newmark
5:26: Dr. Stark explains how a new diagnostic code was created so that physicians and health care providers in the U.S. can now record a specific diagnosis of non-rad AxSpA in medical records, thus facilitating the journey to diagnosis
8:33: The importance of clinical research regarding non-rad AxSpA explained
11:04: Ricky, who got diagnosed with ankylosing spondylitis in 2010, would now fall under the category of non-rad AxSpA should he be re-diagnosed today -- but that category did not exist in 2010
12:09: Ricky explains his road to diagnosis
14:12: Dr. Stark asks Ricky to describe his journey to finding the right doctor for him and what he looks for in a rheumatologist
17:29: The importance of community in Ricky’s journey with non-rad AxSpA and where patients can find support
18:45: Ricky explains how he became an advocate and how he uses his own experience and the knowledge he has accumulated about his condition to help other patients
20:14: Ricky’s tips from his own experience of living with his condition
22:27: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or o
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:29: Listener comment
2:11: Steven Newmark delivers an analysis on the results so far
4:08: What does the projected results mean for health-related policies being passed?
5:09: Steven Newmark offers his views on what the early results look like as opposed to what was previously expected/projected
7:05: “Women have done very well at the gubernatorial level across the country,” says Steven Newmark
9:28: The biggest surprise in the results so far according to Steven Newmark
11:08: What the projected House results mean for health policies
12:14: “Republicans are likely to push to dismantle a number of lingering pandemic policies,” says Steven Newmark
14:00: What the election means for COVID responses around the states, and the potential cuts to Medicare and Social Security
15:11: The hosts discuss what the change in party leadership might mean for the future of drug pricing and the Affordable Care Act
17:30: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:27: Listener comment
2:05: Anxiety and depression are on the rise, having been intensified by the pandemic. Plus, we’re experiencing a therapist shortage.
2:59: “Such an important part of self-advocacy is making sure you're emotionally and mentally well,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF
3:21: Open enrollment for marketplace health insurance has begun, and you can enroll online at healthcare.gov until mid-January 2023
3:38: Premiums are increasing this year, but impact on costs should be limited as Congress passed a 3-year extension of enhanced subsidies as part of the Inflation Reduction Act
4:45: GHLF will be presenting some of its research findings, including patient perspectives, at the upcoming American College of Rheumatology (ACR)
6:48: Melissa Berry aka Cancer Fashionista shares her family history of breast cancer and her journey in getting diagnosed
9:12: Melissa walks us through her thoughts at the time of her diagnosis as well as the support system and resources that helped her in her cancer journey
10:43: From patient to advocate: Melissa reflects on the things she couldn’t find as a patient and how that pushed her toward advocacy and developing resources to help others
12:55: Cancer Fashionista, more than an online resource: a sisterhood
13:49: “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… And that goes for anything: MS [Multiple Sclerosis], diabetes, cancer. It's incredible what they can do with genetic testing these days… It cannot hurt to ask your primary care physician: Can I get a panel done?” says Melissa
15:37: Check out Melissa’s podcast ‘Dear Cancer, I'm Beautiful’
17:10: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:24: Listener comment
1:56: H.4929, a step therapy protection law, was passed by both the Massachusetts House and Senate in October after being introduced for the first time over five years ago
2:37: “Governor Baker has 10 days to sign this bill; otherwise, it will die and it would need to be repassed next year,” says Zoe Rothblatt, Associate Director of Community Outreach at GHLF
2:50: Results from a recent GHLF COVID-19 Patient Support Program quick poll shows that most respondents will be celebrating the holidays in person with only 5 percent canceling plans or celebrating virtually
3:30: Steven Newmark, Director of Policy at GHLF, gives some tips to stay safe this holiday season
5:42: JP Summers describes her – and Corey Greenblatt’s – participation to the virtual advocacy event: All Copays Count Coalition Hill Day
6:54: What are copay accumulators?
8:47: The HELP Copays Act explained
9:27: A look back at JP Summers’ chronic illness journey and how the HELP Copays Act could impact her and other patients if passed
11:35: Are there bills similar to the HELP Copays Act at the state level?
12:18: How patients can get involved and advocate for themselves
12:59: What goes through an advocate’s mind when meeting with elected officials?
15:38: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
COVID-19 vaccines have been effective in saving lives but as winter approaches and yet another coronavirus surge is expected, public health leadersface 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.
Among the highlights in this episode:
0:57: Listener comment
1:33: While flu activity remains low overall, there are increases in certain parts of the country, specifically the Southeast and South-central regions according to the CDC’s first FluView report of the season
2:39: The FDA announced on October 12 that children as young as five are now eligible to receive the bivalent booster
2:59: October 20 marks World Osteoporosis Day, a reminder it's a good time to advocate for yourself and to be proactive about your health and your family's health, so bring up bone health with your doctor
3:18: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, lists fast facts about osteoporosis
4:22: “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,” says Steven Newmark, Director of Policy at GHLF
4:45: Why did vaccine skepticism increase and how can we counter this trend?
6:06: 80 anti-vaccine bills have been introduced in state legislatures around the country
7:01: Childhood vaccination rates fell during the 2020-2021 school year, equating to 35,000 kids not being up to date on their shots
7:37: “Fewer Americans said this year… that they'll get their flu shot, compared to the few years before,” says Zoe Rothblatt
9:42: A culture of distrust in government has developed over the last three decades and some social media platforms and media outlets thrive on constantly criticizing information coming from government sources, including from neutral sources like the CDC
10:55: “I saw some data that showed if 80 percent of eligible Americans got [the] latest COVID boosters, as many as 90,000 lives could be saved,” says Zoe Rothblatt
12:30: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:18: Listener comment
1:56: Zoe Rothblatt, Associate Director of Community Outreach at GHLF, shares her experience after recently getting her bivalent COVID-19 booster
3:25: No more room on your vaccination card to keep track of your COVID-19 shots? You’re not alone, and there are other ways to access your records
4:59: Under new federal rules, health care organizations must give patients unfettered access to their full health records in digital format
6:55: A recent Commonwealth Fund report showed that 43 percent of working-age adults are inadequately insured with 9 percent being uninsured, 11 percent having a period without coverage over the past year and 23 percent with coverage but underinsured
8:09: The CDC is transitioning from daily to weekly COVID-19 case reporting, in line with federal flu reporting, in an effort to lessen data processing burdens on local government officials
9:00: Nearly three years into the pandemic we still do not know with certainty the origins of the virus
10:28: “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. There's a few unknowns here… We want to make sure that we're staying safe,” says Zoe Rothblatt
10:56: The BA.5 subvariant of Omicron remains the dominant strain in the U.S.
11:51: Researchers are working on new kinds of inoculation such as nasal vaccines
12:07: The immunocompromised community would like more research to be done on the level of antibodies needed to stay safe
13:25: According to the CDC, one in five American adults who have had COVID-19 still have “long COVID”
14:45: “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 want to be sure to stay up to date on your vaccines and preventive measures if recommended,” says Steven Newmark
15:37: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:21: Listener comment
1:51: Results from a recent GHLF Patient Support Program poll: 62% of respondents asked their doctor about getting the flu shot and, of those, 97% said their doctor recommended getting the flu shot
2:50: Medicare Part B premiums are set to decrease by $5.20, from $170.10 to $164.90 a month, while the annual deductible will also fall from $233 to $226
4:04: The CDC no longer recommends universal masking in health care settings, unless the facilities are in areas of high COVID-19 transmission
7:02: “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,” says Steven Newmark, Director of Policy at GHLF
7:45: Our guest Nathaniel Brown presents the mission of the Chronic Disease Coalition and the work they do for patients living with chronic disease
8:49: What are the current advocacy-related priorities and preeminent issues addressed by the Chronic Disease Coalition?
9:48: A perspective on legislation progress made over the years and key issues at the state level affecting patients
11:40: How patients are guided and supported by the Chronic Disease Coalition in their advocacy journey and why patient advocates are crucial for sparking real change
14:29: Nathaniel Brown’s advice for people interested in exploring advocacy
15:42: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:21: Listener comment
2:17: President Biden has declared that “the pandemic is over”
3:32: Is the pandemic really over? Recounting the different phases we experienced since the start of the outbreak
4:24: How COVID compares to other causes of death in the U.S.
6:18: Has COVID entered its endemic phase?
7:50: “I think that the more we continue to allow policy makers, people in certain positions to understand that the pandemic… is continuing for folks who are chronically ill, the more folks that know that the better,” says Steven Newmark, Director of Policy at GHLF
8:18: The U.S. Preventive Services Task Force (USPSTF) is recommending primary care physicians screen for anxiety in adults who do not have recognized signs or symptoms of anxiety, depression, and suicide
11:11: Prevalence of Crohn's and ulcerative colitis in South Asia and in descendants of South Asian immigrants across the globe is increasing
12:22: The impact of culture on acceptance and early treatment of IBD
13:30: How Dr. Nandi helps patients advocate for themselves in their everyday lives
14:57: The overwhelming amount of IBD resources and the importance of tailoring information towards one's culture, ethnic background, and health literacy level: advice on where to look for trusted information
17:30: The importance of patient reported outcomes
19:57: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:19: Listener comment
2:08: The FDA has authorized 2 boosters: who’s eligible and why get the updated booster shot
3:22: The CDC shared that a national survey showed 72% of respondents are likely to get the updated booster. However, this may depend on how easily accessible boosters are and the extent to which people know about their benefits.
3:57: A tool built by the CDC can help inform people on when someone is eligible to get a booster shot: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/stay-up-to-date.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fcoronavirus%2F2019-ncov%2Fvaccines%2Fbooster-shot.html
5:18: The importance of being an advocate
Become a 50-State Network advocate: https://www.50statenetwork.org/become-a-50-state-network-advocate/
5:36: Methotrexate: an update on access issues and what it is used for
7:25: Where do we stand with restrictions and protective measures against COVID-19?
8:42: What are some positive, valuable learnings that emerged from the pandemic and what things are still causes for concern?
11:18: 67% of the U.S. population is considered fully vaccinated and only 32% have received a booster shot
12:22: Vaccination from general guidelines to individual timelines
14:10: World Health Organization’s Director-General delivers his most optimistic assessment on the pandemic since January 2020
14:55: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode:
1:23: Listener comment
2:28: COVID-19 Quick Poll result: 95% had not heard about the latest CDC COVID guidance, 70% said they feel unsafe due to the less restrictive guidance
3:33- Zoe and Steven continue to mask up
5:58: The survey measured presenteeism, the concept of showing up for work but not being productive due, in part, to chronic illness
6:31: Respondents suggested six workplace supports, from flexible work schedules to ergonomic and accessible workstation
7:56: Texas has confirmed the first US death of an individual who had Monkeypox
9:22: Introducing our guest, Kellie Cusack, who lives with spinal muscular atrophy and will be featured in a one-of-a-kind fashion show on September 8th, focused on disability representation
10:17: Kellie started fundraising for the cause when she was 10 years old
11:42: Kellie shares how she will participate in “Double Take” during New York Fashion Week
13:17: “Fashion really does play a role in your health and the physical and mental health,” says Zoe
14:52: Kellie encourages listeners to get involved in a cause and become advocates
16:12- What our hosts learned from this episode
Watch Kelly “roll the runway” at New York Fashion Week
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode:
1:06: Listener comment
1:18: Final rule issued on how surprise bill disputes will be settled
2:34: Pfizer asks the FDA to authorize an updated version of their COVID vaccine
3:08: Another cameo by Macintosh the Dog
4:18: Dr. Anthony Fauci announces he'll be stepping down later this year
6:46: CDC Director Rochelle Walensky orders an overhaul of the structure and operations of the CDC
7:28: Since COVID, public health officials have come under attack
8:12: In two years, confidence in public health officials has declined
10:00: What is and what should be the role of the CDC?
15:34: “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, says Steven.
17:45: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:15: Listener comment
1:45: The CDC loosens COVID guidelines as 95% of Americans have acquired some level of immunity
2:05: Zoe and Steven discuss what the CDC’s actions mean for adults and children
5:45: Steven and Zoe still get raised eyebrows because they wear masks in public
8:31: How are pharmacists dealing with prescribing methotrexate, given it’s become less available after the Supreme Court’s abortion ruling
10:58: What can pharmacists do to help patients with medication access
11:40: How can pharmacists help patients become better advocates for themselves
12:30: How does the FDA Arthritis Advisory Committee work in approving new drugs
15:54: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Associate Director, Community Outreach at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:12: Listener comment
1:24: The U.S. Senate passes a bill to allow Medicare to negotiate with drug makers on the price of prescription drugs, caps insulin costs for Medicare recipients, and broadens the subsidies available under the Affordable Care Act for another three years
4:27: Novavax COVID-19 vaccine was rolled out but only 7,300 doses have been administered
5:50: For the first time since 2013, New York State discovered a case of polio in an adult
6:04: What is polio?
6:31: A case of polio was detected in Great Britain earlier this summer
7:48: Wasn’t polio eradicated in 1988?
10:10: “The polio vaccine is one of the great success stories,” says Steven
10:43: How concerned should we be of these cases of polio?
11:04: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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 how a leading health advocate in the UK is serving 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.
Among the highlights in this episode:
1:06: Listener comment
1:40: The U.S. is working to increase access to Evusheld, the preventative COVID treatment to help protect the immunocompromised against COVID
2:37: President Biden tested positive for a rebound case of COVID-19 after being treated with Paxlovid, the antiviral treatment
3:56: The National Rheumatoid Arthritis Society is “the only patient organization in the United Kingdom that focuses specifically on rheumatoid arthritis,” says Clare
5:41: Clare describes the changes she’s seen for rheumatology patients in her 15 years advocating for the organization
7:43: Clare shares what she and other advocates learn by attending the European Conference on Rheumatology
9:53: The ways Clare’s organization keeps rheumatoid arthritis patients up-to-date with the latest health information
11:43: “I think the key thing about being an advocate for yourself is really to have the knowledge and knowledge is power,” believes Clare
13:03: Clare describes ways, big and small, that her organization helps patients
15:27: Clare provides an update on COVID in the UK: “I wouldn't say our community feels safe. But we feel safer than we did two years ago”
17:28: What our hosts learned from this episode
Learn more about Clare’s organization, National Rheumatoid Arthritis Society in the United Kingdom
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode:
1:09: Listener comment
1:24: A fourth COVID shot, the Novavax vaccine has been approved for use
2:05: Survey: more than 40% of U.S. healthcare workers plan to leave their job within the next five years
3:27: The importance of public health workers
4:15: CreakyJoints article has tips for managing your health care costs
5:46: The World Health Organization declares monkeypox a global emergency
6:16: Defining a global emergency as a call to action
7:04: Examples of previous global emergencies: Swine 09, Zika, and Ebola
8:21: What is monkeypox and how dangerous is it?
8:55: Monkeypox symptoms
9:06: How does monkeypox spread?
9:30: Survival rate if you contract monkeypox
10:03: What you need to know about the monkeypox vaccine
10:49: The risk of spreading monkeypox by having sex
11:15: CDC advice on monkeypox
12:13: The WHO recommends isolating for three weeks if you encounter someone with monkeypox
13:45: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode:
1:10: Listener comment
1:41: GHLF Quick Poll results: 25% of respondents who are immunocompromised have received their fifth vaccination
2:53: UnitedHealthcare eliminates co-pays for insulin
3:51: Parents in Florida are struggling to find vaccines
5:12: Vaccines stimulate different branches of our immune system
6:10: If the vaccines are simple and work, what role do boosters play?
6:56: Why do vaccines sometimes cause side effects?
8:01: “You should get a COVID vaccine even if you have already had COVID,” advises Dr. Hernandez
8:49: Vaccines are believed to be effective for all variants
9:34: Speak to your doctor when deciding when to get further vaccines
10:47: What our hosts learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode:
:46: Steven introduces Conner, who hosts his own GHLF podcast with Robert Popovian, Healthcare Matters
1:51: Listener comment
2:17: A new study, led by GHLF’s Dr. Popovian, finds that drug formularies often have exclusions that could harm consumers and cost more money
3:29: COVID cases on the rise
4:28: Some women fear losing access to methotrexate as a result of the Supreme Court ruling on abortion
6:47: As health advocates, GHLF has sent a letter to Texas Governor Greg Abbott, seeking clarification on patient access to methotrexate
7:09: The Biden Administration has taken steps to protect abortion rights
8:39: What our hosts Steven and Conner learned from this episode
Listen to Healthcare Matters podcast with Robert Popovian and Conner Mertens
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode:
1:25: Listener comment
1:41: Rising COVID cases force some counties in Washington State to require masks
2:40: Aetna drops prior authorization for most cataract surgeries, allowing patients to bypass the pre-approval process
3:29: Progress for IBD patients as New York City plans to increase the number of public restrooms
5:36 What is methotrexate
5:55: Some pharmacists are nervous to fill methotrexate prescriptions because after Roe vs. Wade was overturned, the law states that it's a felony if you're dispensing this medication for an abortion
6:42: Cheryl describes why she started “Arthritis Life”
9:03: Cheryl talks about her advocacy for methotrexate
10:40: “I think it's really an example of insult to injury” for patients to be denied methotrexate, says Cheryl
13:25: Methotrexate improves people’s quality of life, says Zoe
15:15: Cheryl’s advice to help patients advocate for their medication
17:25: “We always say, having chronic illness is a full-time job. This is like adding another internship to that job. It's too much,” says Zoe
20:32: What our hosts Steven and Zoe learned from this episode
Learn more about Cheryl and her organization Arthritis Life
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:25: Listener comment
1:49: A fifth shot for the immunocompromised is recommended by the CDC
3:47: The impact of overturning Roe v. Wade is having on the immunocompromised community
6:30: The importance of June being Pride Month, Migraine and Headache Awareness Month, and Juneteenth
7:28: Sarah describes being a Queer, Black woman living with chronic migraine, endometriosis, and anxiety
8:39: “Migraine is part of me, my queer identity is a part of me and they interchange,” says Sarah
9:04: Sarah describes how medical practitioners can help members of the BIPOC and LGBTQIA+ communities
9:41: “I think access to health care and treatment is still such a huge issue for folks in the LGBTQIA+ community,” says Sarah
11:49: Sarah discusses her appearance on the GHLF podcast “Talking Head Pain”
13:47: Sarah’s advice for others to speak up and advocate
15:08: What our hosts Steven and Zoe learned from this episode
Listen here to Sarah's appearance on Talking Head Pain
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode:
1:14: Listener comment
1:44: The Centers for Disease Control and Prevention endorses Pfizer and Moderna vaccines for children as young as 6 months
2:53: Florida is the lone state to not pre-order vaccines for children
3:29: Florida doctors can order vaccines only through the federal government
4:29: Likely passage of new health care and tax-free disability benefits to combat veterans, for conditions ranging from brain cancer to hypertension
5:50: Familiar viruses are acting in unfamiliar ways
6:18: Hospitals are seeing people come in for respiratory viruses, especially children
6:49: Our hosts describe weathering cold and flu seasons during the pandemic
7:35: “I haven't been this sick in two years. It felt so unfamiliar, uncomfortable,” says Zoe
8:09: When Steven recently got a cold, he “couldn't help but wonder if some of that was mental or psychosomatic”
8:35: Researchers believe that acquired immunity is lower for people who stayed inside during the pandemic, including the immunocompromised community
10:34: Experts anticipate that the viruses will fall back into patterns once the population immunity increases
10:52: What our hosts Steven and Zoe learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:11: We’ve surpassed 10,000 listens to our podcast
1:24: Listeners’ feedback
1:48: Pfizer and Moderna ask the FDA to authorize COVID vaccine for younger kids
2:25: Kaiser Family Foundation: 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
3:32: Massachusetts distributing another 2 million free COVID testing kits
4:09: U.S. lifts COVID testing requirements for international travelers returning to the United States
5:36: “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,” say Zoe
5:59: GHLF Quick Poll: what activities are immunocompromised people comfortable doing this summer
7:26: Zoe describes getting her antibody levels tested
7:50: T cells are the white blood cells that work alongside a virus fighting antibodies to mount an immune response
7:56: An international group of researchers recently developed a new blood test to help assess COVID immunity
8:28: While the test is already used in Europe, the FDA is in the process of reviewing the technology
9:46: This blood test lets you know how much protection from COVID you have
10:29: “If there was an at-home version…I would take it every week, depending on the cost,” says Steven
11:30: What our hosts Steven and Zoe learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode:
1:11: Listeners’ feedback
1:36: Macintosh makes another cameo as we begin season 4 of The Health Advocates
1:57: By a vote of 21-0, experts recommend that the U.S. Food and Drug Administration issue an Emergency Use Authorization for the Novavax vaccine
2:58: “A huge win” for the chronically ill community, says Zoe
3:08: Steven takes his first international trip since the start of the pandemic, a medical conference on rheumatology
3:45: The benefits of attending such conferences
4:28: The best way to be a health advocate is armed with information
4:38: At the conference, “there was a lot of discussion about anxiety and depression for patients, long COVID and its implications for autoimmune patients,” reports Steven
5:38: Bombshell finding: Chronic pain was identified as its own disease
6:28: Other discussions at the conference centered on sexual health, fatigue, diet and exercise, the role of your gut and inflammation overlapping with other conditions
7:09: GHLF research was presented
7:34: GHLF report: levels of anger and social isolation measured in people during the pandemic declined after vaccines became widely available
8:07: “It's very important for the medical providers… to hear the mental health plight that patients go through,” says Steven
8:48: What our hosts Steven and Zoe learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:12: Listeners’ feedback
1:51: Angel describes the vision for the podcast, Wellness Evolution
2:30: “Our podcast…ties together real stories and challenges that everyone faces,” says Danielle
3:06: Advocacy starts with self-care
3:41: What is “advocacy burnout” and how does it happen
4:39: Zoe describes the “spoon theory” that can help anyone, especially people living with chronic illness, better manage their life
6:31: Tips for self-care
7:45: Danielle describes her portion of Wellness Evolution that focuses on breathing exercises
9:06: How breathing can help us deal with chronic pain, triggers, and emotions
9:37: Angel explains why Danielle’s breathing exercises are an important part of the Wellness evolution podcast
11:25: The book “The Four Agreements” points to doing your best, regardless of how much energy you have
12:18: “The whole point of the (Wellness Evolution) podcast is that we're ever changing. And that wellness is your evolution,” says Danielle
13:55: The power of “patient stories” that fosters advocacy
16:19: The hosts each describe how community and wellness work hand in hand
10:23: What Zoe learned from this episode
Listen here to the "Wellness Evolution" podcast, hosted by Angel and Danielle
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:16: Listeners’ feedback
1:48: The number of COVID deaths in the U.S. is equivalent to the entire population of San Jose, California
2:21: Novavax is confident that their COVID vaccine will receive FDA authorization in June
2:50: Booster shots authorized for 6-12-year-old children
3:04: A third round of free COVID tests are available
3:31: The background of our guest, Catina Morrison, who's a Corporate Nurse and Chronic Illness Coach
4:11: Catina describes the importance of advocacy in our health
4:36: People with chronic illness are often uncomfortable talking about their ongoing symptoms
5:05: Catina has been living with chronic illness for more than 30 yars
5:50: “Health advocacy means being able to openly and honestly and transparently speak about what your particular circumstances are,” says Catina
7:49: How to overcome gaslighting, when someone minimizes your chronic illness
9:05: Catina shares what’s behind her podcast, Inflamed Sisters Thriving”
10:55: Why Catina has made her work female-centric
12:25: Catina’s free workbook is designed to help women find their voice when it comes to their health
10:59: One tip to help start your self-advocacy is creating a journal to chronicle your health journey
16:14: What our hosts Steven and Zoe learned from this episode
Resources from our Guest
Free Self-Advocacy Guide
"Inflamed Sisters Thriving" Podcast
Catina's Instagram
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode
1:12: Listener’s feedback
1:37: How do you know the difference between a COVID subvariant and variant
2:03: COVID-19 Patient Support Program quick poll results on Evusheld, a medication to prevent COVID before exposure in immunocompromised individuals
4:03: GHLF testified before the Delaware State Senate for a bill that would ban copay accumulator adjusters
4:44: Zoe describes running out of her copay assistance
5:20: Steven recalls how it took 4 people to use his copay card at his specialty pharmacy
6:00: FDA approves Rinvoq for people with ankylosing spondylitis
6:12: New mask mandates in California and Massachusetts
6:53: Class is in session: defining the differences in mutation, strain, variant, and subvariant
10:40: We had COVID, we got a variant, the building blocks have changed
10:56: If you get infected with a particular variant, you’re less likely to be reinfected with that variant in the future
11:17: Why does it matter that we know the differences?
13:01: When you get diagnosed, it feels good to know what it’s called, explains Zoe
14:58: Hopeful signs the virus and its variants are becoming weaker
15:40: Answering listeners’ questions: "I've had one or two doses of Evusheld, now what?”
16:45: Steve and Zoe take us through their safety precautions while out in public
19:47: What our hosts Steven and Zoe learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode
1:30: Listener’s feedback
2:04: Living in this weird period between seasons of COVID
2:36: “We've become more invisible during COVID,” says Zoe
2:50: Advocating helps make you feel you’re doing something positive
3:34: Requests made of the FDA to authorize vaccines for more children
5:00: Parents of young, unvaccinated children feeling anxious
7:24: Fear of future variants, not just sub-variants
9:15: Study: efficacy of fourth dose waning
9:58: Chronically ill know far too well how to plan to be protected
10:27: Changing the phrase “I’m fully vaccinated“ to “my vaccines are up to date”
11:21: Reminder to have all your medical records up to date and in one place
12:21: The CDC is still recommending wearing a mask on public transportation and airlines. Despite a judge striking down mask mandates in those places
12:32: Uncertain what to do with the elevated risk declared in New York City
14:31: What our hosts Steven and Zoe learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.”
Among the highlights in this episode:
1:17: Listener comment
1:43: Plans to expand availability of the COVID drug Paxlovid, which reduces COVID hospitalizations by 90 percent
4:05: The FDA approves the COVID treatment Remdesivir for young kids
5:06: More people are testing positive for COVID
6:04: The CDC believes that 60 percent of Americans and 75 percent of children have been infected with COVID
7:00: Hospitalization rates are stable to declining
7:32: Whatever happened to herd immunity to fight COVID?
9:08: Correlation to methods to contain measles outbreaks
9:49: World Health Organization: measles could become endemic again as a result of vaccine hesitancy
10:18: How the measles vaccine and the COVID vaccine differs
12:51: Steven offers a list of hopeful signs ahead
14:42: What our hosts Steven and Zoe learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
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.
Among the highlights in this episode:
1:08: Listener comment
1:35: Federal mask mandate on planes and trains ends
1:56: “The CDC doesn't have the authority over disease prevention,” laments Zoe
2:06: Repealing the mask mandate frustrates Steven
2:29: The hosts walk us through the last two years, from the virus to masks to vaccines to variants
3:42: “All the lessons feel like they've been unlearned by everybody,” says Zoe
3:59: Amid cheers from passengers, a Delta flight attendant announces the mask mandate is over
4:40: “It makes my heart break that that's where society is,” says Zoe
4:44: “I don't understand how all these adults act like children,” says a frustrated Steven
5:52: Lifting the mask mandate hurts immunocompromised people
6:34: Airlines still recommend passengers wear masks
7:49: COVID-19 Patient Support Program Quick Poll results: 20% of respondents had COVID
9:33: FDA authorizes the first COVID breath test
10:56: Finding tailored solutions for the immunocompromised, starting with safety in the workplace
12:44: What our hosts Steven and Zoe learned from this episode
Read more on this topic: "Immunocompromised? What to Do If You Get Pushback for Wearing a Mask in Public": https://creakyjoints.org/living-with-arthritis/coronavirus/daily-living/handle-pushback-for-wearing-mask-immunocompromised/
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Rashaunda Shaw became a health advocate when her mother and sister were both hospitalized and dying. Now, she’s turned her grief into purpose.
"In the midst of us grieving, we would start this foundation to advocate and raise awareness around digestive diseases in the African American community," says Rashaunda, founder of the nonprofit Shakeilya Shaw Scholars Education Foundation.
Among the highlights in this episode:
1:15: Listener comment
2:02: Philadelphia reinstates its mask mandate
2:49: Dr Fauci talks about personal judgment calls when it comes to taking precautions
4:13: How two family deaths led Rashaunda to start a nonprofit
7:51: Advice for how people can advocate for themselves during health crises
8:05: Take notes
8:22: Ask hard questions
8:54: Use the app called Just Answers
9:41: Hire a family lawyer
10:31: Meet with hospital staff
12:21: How Rashaunda turned her grief into purpose
12:49: Continuing her late-sister’s school supply drive
13:18: Advocating and raising awareness around digestive diseases in the African American community
15:15: What our hosts Steven and Zoe learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
For patients with chronic illness, getting through a day is often daunting. But these same people have the power to impact change when they share their stories. Recently, the Global Healthy Living Foundation participated in an advocacy event to educate lawmakers on challenges facing people with digestive diseases — all in an effort to pass laws to help them.
“A brave person who is suffering from a chronic health care condition is willing to visit their legislator in Washington or get on a Zoom to talk about how they're impacted by digestive diseases and educate them about what's happening in their community,” says Dale Dirks of the Digestive Disease National Coalition.
Among the highlights in this episode:
1:23: Listener comment
2:16: The history of the Digestive Disease National Coalition
4:02: How the death of Dale’s father from colon cancer led him to advocate for patients
4:31: How new treatments have kept people with Crohn's disease and ulcerative colitis alive
5:09: Steven hears people’s frustration with the pace of progress in Congress
6:13: “We convinced Congress to add a colon cancer screening benefit to the Medicare program,” says Dale
6:32: Some of the inroads made by the Digestive Disease National Coalition
7:52: How the digestive community works together
8:35: Ways health advocates are making a difference
9:40: The importance of patient stories in educating lawmakers and passing new laws to help patients
10:25: Advocates from 33 states met with lawmakers on Capitol Hill
12:03: To get involved with the Digestive Disease National Coalition, visit www.ddnc.org
12:27: What our hosts Steven and Zoe learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Imagine having severe abdominal pain, insomnia, and weight loss- and nobody knows how to diagnose you. For patients like Eric, it took painstaking years to properly diagnose him with chronic pancreatitis. In this episode, meet his sister, Megan Golden, who quit her job and launched a nonprofit to help.
“With many diseases that require specialty care, if you're not near one of the few experts and have the ability to see them, then you're just out of luck,” says Megan, co-founder and CEO of Mission Cure, a nonprofit with the goal of improving patient outcomes.
Among the highlights in this episode:
1:07: Listener comment
1:52: Updated CDC guidance allows visitors to health care facilities are allowed to wear highly protective masks
2:44: FDA authorizes a second booster
3:30: Moderna to request Emergency Use Authorization of its vaccine for children 6 months to 6 years old
4:38: Megan Golden discusses her background with Social Impact Bonds
5:22: It took painful years for her brother Eric to be diagnosed with chronic pancreatitis
6:14: How Megan’s work could benefit patients like Eric
7:18: Defining pancreatitis, an inflammation of the pancreas
7:50: The disease is not cause by alcohol consumption
9:07: What does an ideal patient centered care look like in Eric's journey?
9:46: "I feel better today than I have in almost 10 years since I got this diagnosis,” said Eric
10:58: How Megan’s non-profit has had positive impacts
12:25: Advice for patients looking to speak up and advocate
13:13: Bringing stakeholders together
14:28: What our hosts Steven and Zoe learned from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
The new Omicron subvariant BA.2 hasn’t stopped the majority of people from lowering their guard against the virus. Cities are opening, businesses are returning their workers, and even New York City unvaccinated athletes and performers are allowed back.
“I'm trying to stay calm and I'm really grateful for these at-home tests because I had a COVID exposure last week,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “I was able to keep testing and I just felt so reassured to have the test on hand and not freak out like I did in Omicron.”
Among the highlights in this episode:
1:25: Listener comment
2:06: Special enrollment opens to sign up for Obamacare
2:50: COVID-19 Patient Support Program Quick Poll: over 90% plan to wear masks in indoor spaces
3:30: Steven receives new duckbill N95 masks
4:35: New Omicron subvariant BA.2 is impacting people’s mental health
5:16: Viruses appearing in wastewater more than in PCR tests
5:50: Congress fails to approve more COVID funding
7:27: “I'm personally just too worried that too many Americans love the phrase, "I'm over COVID. I'm over COVID. It's done," fears Steven
8:28: “Hopefully we won't see a surge,” says Dr. Anthony Fauci
9:06: Researchers say vaccines remain effective at preventing hospitalizations for BA.2
9:45: “I'm trying to stay calm,” says Zoe
12:06: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
We’ve passed a dubious anniversary we’d all rather forget. This month marks two years since COVID forced the world into a pandemic. In this episode, we look back at how life changed, and what changes may become permanent.
“Folks are really struggling with mental health issues two years in the pandemic,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “Even more so for our community with underlying conditions.”
Among the highlights in this episode:
1:21: Listener comment
2:08: COVID down in the U.S., up in China
3:16: Marking two years since the World Health Organization declared COVID-19 a global pandemic
3:40: What we’ve learned in the two years of COVID
3:48: COVID fueled a growth in telehealth
5:34: Telehealth made it easier to advocate to elected officials
6:03: COVID reveals racial disparities in health care
7:10: COVID led to a new vocabulary, from the “bubble” to “Zoom fatigue”
8:15: COVID brought a rise in outdoor dining
9:04: COVID led to the adoption of wearing masks
9:35: Three COVID vaccines manufactured in one year
9:45: Antiviral therapy created to protect against COVID
10:04: COVID created a dramatic increase in mental health issues
10:20: “It really does feel like people are moving on and don't care,” says Zoe. “And I want to move on and not to care too. But when you're immunocompromised, you really just don't have that luxury.”
10:42: Some formed stronger bonds during COVID, with people and pets
11:22: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
One of the best ways to improve health care in the United States is to educate lawmakers. And these days, conversations are made easy through Zoom. Recently, health advocates from the GHLF participated virtually in the Digestive Disease National Coalition's Public Policy Forum. Their aim was to encourage the passing of the Safe Step Act, which would protect patients from insurance companies overriding doctor's recommended therapies, and direct money to digestive disease research.
“Virtual advocacy has given us the ability to reach legislators in a way in which we previously weren't able to,” says Corey Greenblatt, Manager of Policy and Advocacy at the Global Healthy Living Foundation.
Among the highlights in this episode:
1:13: Listener comment
1:53: Hawaii last state to drop mask mandate
2:36: More government-issued free COVID at-home tests available
3:11: "Test to Treat Initiative"- COVID test and treatment
4:05: Describing the Digestive Disease National Coalition's Public Policy Forum
4:35: Health advocates meet with state delegates to educate lawmakers
5:35: The power of patient stories on lawmakers
6:53: Advocating for step therapy- why it’s a huge issue for patients
7:26: The Safe Step Act would establish common-sense protocols and protections for patients
7:59: Cameo appearance from Corey’s dog Walker
8:16: Analogy of upgrading your cellphone
8:54- Corey describes his and Zoe’s meeting with a Long Island lawmaker
11:28: Steven and Corey confident the Safe Step Act will become law
12:49: Advocating for increased funding for digestive disease research and public health programs
13:53: The power of virtual advocacy through Zoom
15:36: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
As the country eases mask mandates, people are now balancing the risk of contracting and transmitting COVID with their decision to let down their guard. For the immunocompromised, there remains caution, concern, and sometimes fear.
“Let's also remember that mask optional doesn't mean no mask. You can still wear a mask if you want to. I certainly will,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “The Health Advocates are masking up!”
Among the highlights in this episode:
1:13: Listener comment
2:00: New research points to the pandemic originating in animals and spread to humans from a seafood market in Wuhan
2:53: Variety of health care developments in the news
3:03: Court rules patients can now appeal if Medicare declines to pay for rehabilitation
3:27: California eases Medicaid qualifications
3:43: Social Security Administration reopens 1,000+ local offices, which allows people to apply for supplemental security income
4:20: Not a lot of health care rulings by Supreme Court nominee Ketanji Brown Jackson
4:43: Health care part of the focus in President Biden’s State of the Union Address
5:13: Mask guidelines are adjusted
8:16: Processing individual’s risk of not wearing masks and transmitting COVID
11:23: “Masks feel like something we can control in contrast to the COVID rates, which don't feel like something we can control,” says Steven
11:45: “Let's also remember that, you know, mask optional doesn't mean no mask. You can still wear a mask if you want to. I certainly will,” says Zoe
13:46: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
mRNA vaccines have provided valuable protection against COVID. Now, researchers saythey can also be used to create a variety of vaccines and treatments in less time and at lower cost than traditional methods.
“The mRNA technology has been known for decades, but it was never fully realized until this crisis. And this new technology is currently being studied in cancer therapies, cystic fibrosis, heart disease and rare genetic conditions,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Among the highlights in this episode:
1:14: Listener comment
1:50: How to receive your free COVID at-home tests
2:08: How California is shifting to an endemic approach to COVID
2:42: “People are desperate to get back to whatever semblance of normalcy they vaguely may remember,” says Governor Gavin Newsom
3:33: Advancements made during COVID, specifically the mRNA vaccines
4:21: How the new mRNA technology works
5:21: The benefit is the ease in tweaking the mRNA genetic sequence
6:03: This new mRNA can be used to create a variety of vaccines and treatments in less time and at lower cost than traditional methods
6:38: “It matters to me as a patient to hear about advancements happening because I know in the future as I get older, there will be new treatments to try,” says Zoe
7:12: Specific advancements in the works with mRNA
8:10: What did our co-hosts Steven and Zoe learn from this episode
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Disparities in migraine and headache care exist at every single level, from seeking care to diagnosis to treatment. In this episode, we talk with a leading advocate in the BIPOC community who has made it her life mission to sound the alarm to help reduce disparities in health outcomes.
“Migraine is the least funded research area relative to its very high disease burden. And I knew that this was something that I wanted to get involved in,” says Sarah Shaw, BIPOC Patient Advocate, Community Outreach Manager at the Global Healthy Living Foundation.
Among the highlights in this episode:
1:16: Listener comment
2:06: The Pfizer vaccine for use in children under five years old is not authorized
4:09: Recommendation to get the fourth shot of the mRNA vaccines three months after the third shot rather than five months
4:23: “COVID-19 Patient Support Program Poll” results: 96% of respondents have received their fourth shot
5:25: Rescinding mask mandates worry immunocompromised community
6:07: How to receive free N95 masks
7:42: Sarah discusses the annual advocacy event “Headache on the Hill”
8:16: How did Sarah first get involved in advocacy? “I feel like accidentally, if I'm being honest”
9:39: How does “Headache on the Hill” work among state groups?
10:43: Disparities within the migraine community
12:33: How Sarah recruited BIPOC advocates
13:46: Story of how an Indigenous community member waited 4 hours to get care and treatment
14:11: “Disparities in migraine and headache care exist at every single level from seeking care to diagnosis to treatment,” says Sarah
17:33: Get involved by joining the GHLF 50 State Network
17:43: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
For many, life feels flat from dealing with COVID for nearly two years. In this episode, we examine the growing momentum of states across the United States starting to deal with COVID as an endemic and not a pandemic.
“We didn't and we won't eradicate COVID as was a hope once upon a time, but we have to be prepared to live with the endemic phase,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Among the highlights in this episode:
1:08: Listener comment
1:56: Low interest in the Olympics, low interest in many things these days due to the pandemic
2:32: Positive news from the CDC regarding KN95 and K95 masks
2:51: New study results of the effectiveness of wearing masks
4:39: Many states are rolling back mask mandates
6:07: “We didn't and we won't eradicate COVID as was a hope once upon a time, but we have to be prepared to live with the endemic phase,” says Steven
6:17: New treatments becoming available to fight COVID, including the potential for over-the-counter therapies
8:04: Status of government issued at-home rapid COVID tests
8:33: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
COVID fatigue has resulted in many people questioning everything from booster to masks — but this fatigue is dangerous to our immunocompromised community. They don’t have the luxury of declaring that COVID is over.
“Coping with the uncertainty of yet another variant is taking a toll on our mental health,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation. “COVID is not over and we'll keep advocating and keep our listeners updated as more information comes out.”
Among the highlights in this episode:
1:37: Listener comment
2:11: The trending hashtags on social media declaring COVID is over
3:03: Steven’s frustration with people relaxing COVID safety precautions
3:25: Zoe’s exasperation that she can’t simply declare her health conditions to be over
5:49: Zoe’s arrival of new, blue masks from Project N95
6:46: Zoe learns people aren’t unnecessarily being turned away from receiving their fourth shots
8:57: It’s been a big week for the COVID vaccines
11:05: Stagnant vaccine rates for children 5 to 11 years old
12:01: Word of a new variant emerging
12:54: “COVID is not over,” reminds Steven
13:08: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
It’s tough enough to live with and manage a chronic illness without insurance companies making it even harder. From utilization management tactics like step therapy to copay accumulator adjusters where insurers charge a patient twice, there are many systems in place that save insurance companies money and increase costs for patients.
“Imagine going to a drive-thru and say you know what, I want to be a Good Samaritan, I want to pay for the person's meal behind me,” says Corey Greenblatt, Manager of Policy and Advocacy at the Global Healthy Living Foundation. “Person behind them drives up and the person at the window says, ‘Hey, even though the person in front of you just paid for your meal, you didn't pay for it, so I'm going to charge you again.’ The drive-thru collects the money twice, and the person now has to pay for themselves, even though that was already paid for.”
In the second part of our two-part EXTRA on utilization management, we explore how new laws could help patients, plus share ways that patients can get involved and advocate for themselves.
Among the highlights in this episode:
1:26: What is utilization management?
2:40: Corey describes how insurance companies are looking for ways to save money and pass costs onto patients
3:25: New state laws are being enacted to help patients deal with utilization management
4:44: What are the specifics of these new laws?
5:27: Why is a federal law required if some states are passing their own laws?
8:18: How can patients know if their state has laws to help?
10:05: What is non-medical switching and why is it harmful to patients?
12:50: What’s the impact that utilization management has on patients who use copay assistance programs?
13:42: Corey’s analogy of a person at a drive-thru restaurant
14:42: The importance of patient stories on elected officials
15:42: How patients can become advocates through GHLF’s 50 State Network
16:11: Zoe shares the template for patients developing an elevator pitch
16:55: What did Steven, Zoe, and Corey learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Insurance companies devise new ways to save and make money. One method is called utilization management, where insurers direct patients to treatments that are counter to what the patient’s doctor recommends. Utilization management is so important and controversial that we’re devoting two episodes to the topic, so patients are better informed and can better advocate for themselves.
“Imagine being in the exam room with me and my neurologist and then getting told by your insurance company that you're not eligible for the treatment that you both decided would work for you. That's what happened to me,” says Joe Coe, Director of Digital Education and Strategy at the Global Healthy Living Foundation and host of the Talking Head Pain Podcast. “And my neurologist needed to do a ton of paperwork called prior authorizations to get my medication approved.”
Among the highlights in this episode:
2:17: What is utilization management?
4:00: Physicians devote approximately $26.7 billion in time spent navigating utilization management
5:02: Calculating how much time and money patients waste dealing with their insurance companies
7:14: Joe Coe recalls his first migraine attack
8:36: “Utilization management, when I hear that term, it makes my skin crawl,” says Joe
10:34- The challenges patients face in dealing with their insurance companies during their workday
11:34:- Joe’s advice for dealing with insurance companies
12:04: What is a cheat code and why is it crucial for patients to know?
15:33: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Athletes competing in the Winter Olympics in China will get a taste of the strict safety precautions many immunocompromised people have been following since the start of the COVID-19 pandemic.
“Athletes are not eating out, they're masking up, double masking when needed, and avoiding friends and family,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation. “So I guess the irony is that these super fit athletes are living life like the immunocompromised community,” responds Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
In this episode, we dive into the COVID precautions being taken in China. Plus, we discuss the fourth vaccination that immunocompromised people in the United States are now eligible to receive.
Among the highlights in this episode:
1:59: The first of many cameo appearances from McIntosh the Dog
2:07: Listener feedback
3:05: The biggest competition may involve the athletes versus COVID
3:21: Describing China’s zero COVID policy
4:46: China’s COVID case loads are low
5:11: China’s vaccination rates and the low quality of its vaccines
5:42: Stories of Chinese citizens being forced into lockdown
7:38: Could the Winter Olympics be canceled?
8:02: The Olympic bubble or “closed loop” that organizers have created to keep athletes safe
9:48: Safety requirements for athletes traveling to China to compete
10:02: “I guess the irony is that these super fit athletes are living life like the immunocompromised community,” says Steven
10:29: Status of the fourth shot immunocompromised people are eligible to receive
11:58: Recommendations for immunocompromised community looking to get a fourth shot
12:33: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
With Omicron still surging in much of the United States, more people are in need of getting tested for COVID. So free at-home tests are now available to all Americans. At the same time, there is new guidance for what type of mask we should be wearing to stay safe. In this episode, we provide useful information on how to obtain at-home tests and which masks are recommended.
"Now, we have the KN95, which is the Chinese respirator standard. These may be more likely to be a fake. I bring this up because I actually think I bought a fake one. I was a little disappointed to find out when I did my research,” reveals Zoe. “You got some fake ones?,” asks Steven. “Yeah, I think so,” laments Zoe.
Among the highlights in this episode:
1:32: Listener feedback
2:11: Insurance coverage for at-home rapid tests
2:52: Private insurance required to provide 8 at-home tests per month per person in household
5:11: Government website COVIDTests.gov to order 4 at-home test kits
6:49: New mask guidance
7:38: “The 95 masks are designed to filter at least 95% of the particles in the air,” says Steven
8:09: Zoe walks us through the differences in the variety of masks available to wear
11:15: Find high quality masks at Project N95
11:41: COVID-19 Patient Support Program poll: nearly 25% of survey respondents said they had difficulty accessing N95 or KN95 masks
13:18: “Any mask is still better than no mask if you can't get your hands on one of these 95s,” says Zoe
13:34: Update on Omicron decline in the Northeast
14:19- U.S. Surgeon general warns Omicon has not yet peaked in America, including rural areas
16:08: Latest vaccination rate numbers: 63% of Americans are vaccinated, only 38% are boosted
16:44: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
Patients will benefit from a new law that took effect to start this year, making it illegal for doctors and medicial institutions to send surprise bills to patients. It’s estimated that 10 million surprise bills are sent to patients, usually when they have no choice but to use an out-of-network provider, often during emergency room visits.
“When you're lying on the table there with that big bright light in your face about to go under, you're not necessarily thinking, Hey, are you in my network?,” says Zoe. Steven adds, “It's not even like you could say, wait a minute before we start, are you in my network? But the good news is surprise medical bills are now, surprise, illegal.”
Among the highlights in this episode:
1:23: Latest on COVID and Omicron
1:55: New learnings on cloth masks
2:11: New information that Omicron appears in a person’s throat and not the nose
2:54: Procedures for school safety and teachers calling in sick
3:27: At home tests reimbursable starting January 15
4:23: Surprise medical billing is now illegal
5:56: 10 million surprise bills are typically sent out in a year
6:08: The surprise bill plight for the chronically ill
6:46: Surprise bills have exceeded $20,000 at a time
7:16: What’s behind the No Surprises Act
7:44: Example of how the new law protects patients in the emergency room
8:51: Example of how the new law partially protects patients using ambulances
9:38: Example of how the new law protects patients during routine hospital procedures
10:56: The phone number to call if you have a problem is 1-800-985-3059
11:03: Could patients still get a surprise medical bill?
12:19: How is this new law being enforced?
13:15: What should you do if you receive a surprise bill?
13:49: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
As we start a New Year with the Omicron variant raging, there’s both a sense of hope and concern. There’s hope that symptoms are mild and we could reach herd immunity — and there’s concern that many people still aren’t vaccinated and refuse to wear masks.
In this episode, co-host Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation, tells the story of a person who recently refused to put on a mask in her apartment building, despite the known mask policy. “The doorman politely said, ‘Could you please put a mask on?’ And then the guy said, ‘Everyone I know has COVID, I'll just get it when I get it. If it's my time to go, it's my time to go. Why do we even need this?’ And I was standing right there being like, you have no idea that you think this is a young healthy group here, but it's not and people are living with serious conditions,” laments Zoe.
Among the highlights in this episode:
1:30: Listener comment
2:51: Status of Omicron by the numbers
3:20: Two pieces of positive news regarding Omicron
5:22: Immunocompromised community very worried
5:26: 80% of our survey respondents worried about Omicron
6:04: Boggles co-host Steven’s mind how people won’t mask up
6:53: Boosters protect from Omicron, including 12-15 years old in the U.S.
8:02: Approval of a fourth shot in Israel and soon in the U.S.
9:06: Could Omicron lead to herd immunity?
9:35: Need to focus on the mental health aspect of Omicron
9:59: Zoe tells of getting “mask-shamed”
11:03: Steven’s holiday dealing with unmasked people
11:41: Zoe recounts a man with no mask in her apartment building
12:10: “There's an excess of selfishness.” —Steven
12:16: NYC anger: a school bus driver goes ballistic on an elderly motorist
13:48: How education provides a respect for science and facts
14:28: “Everyone is their own unique scientist these days, just like they are politicians.” — Zoe
15:18: Sorting through which mask and how many we should wear to fight Omicron
16:16: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on our website or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
The rise in Omicron has put added stress on doctors and nurses, as well as on our emotions as we weigh whether to change holiday plans. New restrictions are in place, people are double-masking, boosters lag behind, and at-home COVID tests are hard to find. The uncertainty in how we should respond to Omicron reminds one of our hosts of a famous George Carlin joke, bouncing emotions between an idiot and a maniac.
“If I'm double masked, and I see someone wearing three masks, I'm like that person's crazy. That person's a lunatic. But if I see someone with only one mask or not masked, of course, I'm like, what an idiot, that person's an idiot,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Among the highlights in this episode:
: 55: Listener comment
1:42: Omicron now makes up 70% of the COVID infections in the U.S.
2:25: Are we reliving March 2020?
2:55: Hospitals are better prepared
3:06: Restrictions return from Broadway to Europe
3:47: “All of us want to spend time with friends and family. But an event canceled is better than a life canceled,” says Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization
4:04: Immunocompromised living in fear
4:46: Will co-hosts Steven and Zoe change their holiday plans?
6:15: The pursuit and cost of at-home COVID tests
7:02: “It should be simple to take a test in the comfort of your own home,” says Steven
7:47: Some Urgent Care locations are temporarily closing because they’re overwhelmed
8:14: The Biden Administration’s plan to fight Omicron
9:24: New drug to help the immunocompromised community
10:38: Steven now more concerned about his sanity than safety
10:47: Idiot or maniac? How a George Carlin joke reminds Steven about people with COVID
11:51: The type of mask you wear matters
13:08: Update on Build Back Better legislation that could help patients
13:49: What did our co-hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF: zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself, to thehealthadvocates@ghlf.org
Catch up on all our episodes on your favorite channel or on our website.
See omnystudio.com/listener for privacy information.
Pandemics historically end after two to three years but with the emerging Omicron variant, the question is, are we coming out of the pandemic or going backward? And how will we know when we cross the finish line that the pandemic is over?
“There's never going to be a bright line that we cross but there'll be a moment when hospitalizations are down, when we have the therapeutics to help us if we do get sick, similar with the flu and hopefully the strains will become less and less virulent,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Among the highlights in this episode:
: 44- Listener comment
1:19- When will the pandemic end?
1:47- Some states reimposing mask mandates
2:47- Similarities between COVID and the 1918 flu pandemic
3:35- How the 1918 pandemic came to an end
4:45- “Historically, most pandemics end roughly (after) two to three years”
5:36- Today, many people have returned to their normal way of living
5:55- Steven tempted to encourage strangers on the NYC subway to wear masks
7:40- Comparisons of the Delta and Omicron variants
8:34- When will the Omicron variant peak in the United States?
10:14- Steven- “Testing in our country has become a fiasco.”
11:49- What can policymakers and advocates do to help
12:30-What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes and the previous season at The Health Advocates or on your favorite podcast channel.
See omnystudio.com/listener for privacy information.
There are many factors at play when addressing the cost of prescription drugs. A recent poll showing 83% of adults think the cost of prescription drugs is unreasonable. In this episode, we examine several proposals being considered by Congress.
“So complicated. It seems like this could have really big implications for drug pricing and it will be interesting to see how this plays out especially because so many in our community rely on drugs to live meaningfully and daily life with their conditions,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation.
Among the highlights in this episode:
:48- Listener comment
1:24- Is the cost of prescription drugs reasonable?
1:50- “It’s expensive to be chronically ill”
2:06- Steve cites a poll showing 83% of adults think the cost of prescription drugs is unreasonable.
2:26- Congress considering the Build Back Better Act and how it relates to prescription drug prices
2:53- Status of the Build Back Better Act
3:11- Breaking down the 6 provisions in the Act which refer to drug prices
11:38- Politics of passing legislation
12:28- Schoolhouse Rock- How a bill becomes law
14:02- Latest on Omicron variant and vaccine
14:42- A look at Israel where majority of country has 3rd Pfizer vaccine
16:20-What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes and the previous season. The Health Advocates
See omnystudio.com/listener for privacy information.
The majority of Americans have been vaccinated, including the millions of people who have already received an extra booster shot. But how will these vaccines protect us from the new variant Omicron?
“Take precautions, lets prepare ourselves by being calm and if we have to lose that calm and become crazy, we’ll deal with that when we have to deal with it,“ says Steven Newmark- Director of Policy at the Global Healthy Living Foundation.
Among the highlights in this episode:
:52- Listener comment
1:41- Steven’s Thanksgiving was “tested”
2:35- Concerns of the new variant Omicron
2:51- Will our current vaccines hold up against Omicron?
3:27- Macintosh The Dog makes the first of many cameos
4:04- Leaders are making balanced statements about the new variant
4:30- Does mainstream media create unnecessary anxiety?
4:52- “Anticipatory Anxiety” over Omicron
5:26- People with underlying conditions fear the new variant
6:12- How do we prepare for Omicron?
6:28- Steven- “Lets prepare ourselves by being calm and if we have to lose that calm and become crazy, we’ll deal with that when we have to deal with it.”
7:01- Encourage people you know to get vaccinated and the booster shot
7:30- Latest vaccination rates of Americans
8:25- Children’s vaccines are easing anxiety and fear among parents
8:48- Steve’s curiosity of whether his children’s classmates are vaccinated
10:14- A look back at the positives of vaccinating Americans in the last year
11:32- What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes and our previous season at The Health Advocates.
See omnystudio.com/listener for privacy information.
Studies show COVID vaccines wane over time, leading to a push for a booster, or an additional shot of the COVID vaccine. In this episode, we explore whether to get the booster, when to get it and how often.
“Needles are intimidating for sure and I definitely felt a lot safer after getting the third shot,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation.
Among the highlights in this episode:
:37- Listener comment, was someone taking a dig at Steven’s favorite baseball team?
1:24- Zoe and Steven are inspired by “Hamlet” and ask the key COVID booster shot question- to boost or not to boost?
2:38- Other country’s booster policies
2:50- Some health officials in the U.S. are not waiting for FDA to authorize boosters for all adults
3:34- Studies show vaccine effectiveness wane over time
4:37- Immunocompromised patients should consider a third shot
5:01- Zoe describes a conversation with her rheumatologist about getting a third booster shot
5:27- Steven “was in agony…wrapping myself in knots” over getting a third shot
6:35- Some experts not making a recommendation on a third shot yet
7:39- Potential to get regular booster shots
8:05- Could the public lose trust in the vaccines?
9:19- Dr. Fauci- booster could be part of the complete regimen
10:02- First email question- could those who oppose the vaccine be needle phobic?
10:27- McIntosh the dog makes another cameo
11:25- What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes and the previous season. The Health Advocates
See omnystudio.com/listener for privacy information.
It’s beginning to feel a lot like…the holidays, holidays that will feel different from last year thanks to vaccines, COVID testing, and the lifting of the travel ban. But there are still precautions you need to take to protect yourself from the pandemic.
“I do want to scream, I said, “what do you think is going to happen in a few weeks that hasn’t already happened?” These vaccines have been around for a long time. They’ve been tested, tested, and tested. Get it as soon as possible,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Among the highlights in this episode:
1:37- Precautions that Steven and Zoe are taking this holiday against COVID
2:52- GHLF poll: 11% of chronically ill plan to celebrate holidays in the manner they celebrated before COVID
3:07- Suggestions for families before gathering for the holidays
4:00- Vaccinations make this holiday different from last year
4:25- Steve shares details of getting his two children vaccinated against COVID
5:59- Positive peer pressure to get vaccinated amongst children
6:22- Some parents still waiting before getting their children vaccinated
7:50- Big Bird- “don’t wait, vaccinate”
8:18- Legal challenges to Biden Administration mandate plan
10:07- U.S. lifts travel ban for fully vaccinated foreigners
12:47-What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes and the previous season. The Health Advocates
See omnystudio.com/listener for privacy information.
COVID fatigue has set in and there won’t be a big party to announce the pandemic is over. So how do we shift the debate from how to end the pandemic to how to live with it? Plus, what impact does the pandemic have on our mental state and for people living with chronic illness?
“I think the goal at this point is no longer to eradicate COVID. The priority now is to remove it from being the guiding force in all of our lives, says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Among the highlights in this episode:
2:17- How can we safely live with the pandemic in our lives?
2:45- Did pandemic fatigue play a role in recent elections?
3:07- Complacency wearing masks- analogy of unbuckling our seatbelts too soon on an airplane
4:10- What does a future with COVID look like?
4:36- New phase of living with COVID- “it’s becoming part of the furniture”
5:19- Zoe’s dream scenario of society during the COVID pandemic
5:45- Treatment options becoming more available
5:58- Report: If 95% of Americans wore masks in public, there would be 56,000 fewer deaths
6:33- Precautions during flu season, impact on chronically ill people
7:21- Steven- “I think the goal at this point is no longer to eradicate COVID. The priority now is to remove it from being the guiding force in all of our lives”
7:31- Goals and success of vaccines
8:36 – Living with COVID and the ensuing stress called, “pandemic flux syndrome”
9:34- Status of vaccines and children
9:53- Another cameo from McIntosh the dog
10:19- Does Steven have any concerns about vaccinating his children?
10:40- Steven’s two takeaways to vaccinate children
11:53- What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on all our episodes and the previous season. The Health Advocates
See omnystudio.com/listener for privacy information.
A sad consequence of the pandemic is the erosion of trust in public health officials. Physical threats, cuts in funding and changes in laws have led to an exodus of qualified public health workers in the United States. In this episode, we explore how this crisis goes beyond the pandemic and what this means for you as someone living with chronic disease.
“Public health departments have been at the forefront of delivering vaccines that helped eradicate smallpox and polio. Public health officials are responsible for so much more than the direct individual being,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation.
Among the highlights in this episode:
3:00- The dedication, belief, and power in public health
3:31- Public health departments are now less equipped to confront a pandemic
3:55- Impact of new laws that limit the powers of state and local health officials
4:23- Examples of states undermining public health
5:16- Masks and mandates are a common good
5:36- Positive impact of public health officials on our communities
6:42- Perspective of responding to the rise in tuberculosis in the 1980’s
8:30- The irony of a successful public health campaign to fight the Ebola virus
9:15- Successful public health campaign to eradicate polio
10:09- Steve’s bedtime stories about the polio vaccine
10:39- Zoe’s sixth grade science fair presentation on smallpox vaccine
11:20- The focus of public health has turned to personal health and away from collective health
11:55- Specific threats against public health officials and its consequences
12:54- How can we combat this attack against public health? Advocate!
13:21- Steven and Zoe’s restaurant requirements
14:44-What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on our previous season of The Health Advocates
See omnystudio.com/listener for privacy information.
Congress is debating two major pieces of legislation that could have an impact on patients, especially ones with chronic illness who rely on prescription drugs. We dive into the fray to examine the tradeoffs of negotiating lower drug prices.
“Obviously we want it all. We all want cheap drugs but we also want more advances. Ultimately you cannot have everything. Drug prices seem to be an easy target because unlike, say, the prices of cars, they include products that can save one's life,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Among the highlights in this episode:
1:37- Steven outlines the two major pieces of legislation that Congress is debating
3:16- Macintosh the dog makes his third podcast cameo
3:28- What would allowing Medicare to negotiate drug prices mean for patients?
4:04- The tradeoffs of allowing Medicare to negotiate lower drug prices
4:40- How many new drugs does the Food and Drug Administration approve each year?
5:06- Why Americans have unparalleled access to cutting edge treatment
5:25- What percentage of the world’s pharmaceutical research and development originates in the United States
6:00- “When you’re chronically ill, there’s a cost burden every month...for the rest of your life”
6:31- “Obviously we want it all. We all want cheap drugs but we also want more advances. Ultimately you cannot have everything. Drug prices seem to be an easy target because unlike, say, the prices of cars, they include products that can save one’s life”
7:00- This issue is a complex one
7:19- New information on booster shots
8:28- What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on our previous season of The Health Advocates
See omnystudio.com/listener for privacy information.
Vaccine mandates are taking over the political landscape in upcoming elections. But are vaccine mandates a matter of personal liberties and if so, whose liberties are more important: those vaccinated or those who refuse to be?
“I’ve been carded at a restaurant for my vaccine and I feel so much safer and I think that can bring a lot of comfort to people in our community knowing that you’re going into a building that’s safe and if you are going to sit down at a restaurant and if the mask comes off, you know that those around you are vaccinated so the spread is lower,” says Zoe Rothblatt, Patient Advocate and Community Outreach Manager at the Global Healthy Living Foundation.
Among the highlights in this episode:
2:05- How some states are reacting to vaccine mandates
2:30- Missing salesmanship? Let’s call it testing mandates
3:20- Court case- history of smallpox vaccination fines
4:02- George Washington’s first mandate
4:29- Personal liberties- is one person’s more important than another’s?
6:08- Are testing and vaccine mandates working?
7:37- Zoe gets carded at a restaurant
10:52- Steve hears from small business owners who, often silently, prefer vaccine mandates
12:05- Listener feedback: an unvaccinated Aunt dies from COVID
12:49- Steven’s heartfelt reaction- “I feel almost personally responsible….a personal sense of loss, of failure.”
14:07- What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on our previous season of The Health Advocates
See omnystudio.com/listener for privacy information.
Two podcast hosts traveling in two states share two memorable stories of searching for or being required to get a rapid COVID test.
“The price of a McDonald’s hamburger is the price of a McDonald’s hamburger but the price of an at-home COVID test really does vary depending on where you are in this country,” says Steven Newmark, Director of Policy at the Global Healthy Living Foundation.
Among the highlights in this episode:
1:36- How do we end the pandemic?
2:38- Status of at-home COVID testing
4:09- Steven’s story of stressing out in search of a rapid COVID test
6:35- Cost of at-home COVID tests
8:04- Macintosh the dog makes his second podcast cameo
8:36- Zoe’s story of being tested at a wedding
9:29- Who should get tested?
10:59- What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to thehealthadvocates@ghlf.org
Catch up on our previous season of TheHealthAdvocates
See omnystudio.com/listener for privacy information.
As we start season two, we have a new look, a new title and a renewed focus. Steven and Zoe walk us through the confusion over vaccines, boosters and conflicting scientific opinions. On top of this, we see how trust is compromised when government agencies don't agree.
"Confusion might be an understatement," says Zoe Rothblatt, Patient Advocate at the Global Healthy Living Foundation.
Among the highlights in this episode:
4:40- Has the federal government been too timid in responding to the emergency?
9:17- FDA decision-making process
10:03- CDC advisory meeting
10:33- How do you make sense of conflicting opinions and ever-changing guidance?
13:01- Can you test your current state of antibodies?
14:40- What did our hosts Steven and Zoe learn from this episode?
Contact Our Hosts
Steven Newmark- Director of Policy at GHLF. mailto: snewmark@ghlf.org
Zoe Rothblatt, Patient Advocate and Community Outreach Manager at GHLF. mailto:zrothblatt@ghlf.org
We want to hear what you think. Send your comments, or a video or audio clip of yourself to mailto: thehealthadvocates@ghlf.org
Catch up on our previous season of TheHealthAdvocates
See omnystudio.com/listener for privacy information.