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.