The Health Advocates

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 18thTime: 6:30 PM EasternLocation: 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.

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.See omnystudio.com/listener for privacy information.

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.See omnystudio.com/listener for privacy information.

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.See omnystudio.com/listener for privacy information.

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.See omnystudio.com/listener for privacy information.

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.See omnystudio.com/listener for privacy information.

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.