Podcasts about ghlf

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.

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, 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 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, 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 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, 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, 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, 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 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, 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.

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, 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 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, 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 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 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 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. Amanda also offers advice for if you're feeling nervous on connecting with stakeholders. 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.

Joe Selvaggi talks with neurobiologist and writer Dr. Anne Sydor about the potential for gene therapy to address deadly and debilitating diseases and how current health care models must adapt to encourage this nascent technology.   Guest: Dr. Anne M. Sydor, PhD, directs Research Development and Communications at GHLF. She earned her BS in molecular […]

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 episodeTo 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. 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.