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.

See omnystudio.com/listener for privacy information.

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.

See omnystudio.com/listener for privacy information.

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.

See omnystudio.com/listener for privacy information.

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.

See omnystudio.com/listener for privacy information.

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.

See omnystudio.com/listener for privacy information.