Hope Charities

Jonathan James
  • 4.8 (5)
  • MEDICINE
  • UPDATED WEEKLY

Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.

  1. MAR 12

    How Patients Lose Access to Medication — The Hidden Impact of Alternative Funding Programs

    Alternative funding programs are rapidly spreading across employer health plans—but many patients don’t understand how these programs can affect their access to medication. In this episode, William Sarraille, professor of practice and patient advocate, explains how AFPs work, why they’re expanding, and what they mean for patients who depend on high-cost therapies. Together we explore: • What alternative funding programs are • How some plans remove specialty drugs from coverage • Why patients are redirected to third-party assistance programs • Research showing average therapy delays of up to 68 days • How ERISA and ACA regulations create legal openings for AFPs • Privacy and discrimination risks tied to health data sharing • The ethical impact on limited manufacturer and charity programs • An active legal challenge involving foreign-sourced medications We also discuss how patients and advocates are pushing back—and what individuals can do to protect themselves. If you’re navigating a self-funded health plan or supporting someone who is, this episode provides important context and practical steps for protecting access to care. Subscribe for more conversations about patient advocacy, healthcare policy, and access to treatment. Learn more about William Sarraille: https://www.linkedin.com/in/william-sarraille-634a8827/ Related Research: HOPE Charities also conducted a peer-reviewed survey examining patient experiences with alternative funding programs (AFPs), including delays in medication access, financial burden, and treatment disruptions. The study highlights how these programs may impact patients relying on specialty medications. Read the study here: https://pubmed.ncbi.nlm.nih.gov/39471273/ Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org.  Support the show

    54 min

  2. FEB 27

    Misdiagnosed for 26 Years: Nandini Pethe on Living with Moderate Hemophilia

    For 26 years, Nandini Pethe was misdiagnosed before learning she was living with moderate hemophilia. In this episode, she shares her journey from unexplained bruising in India to discovering factor VIII levels around 3%—and how the right diagnosis, the right team, and the right data changed her life. We discuss: • Early Symptoms and Misdiagnosis as von Willebrand Disease • A Locked Knee at 26 and First Effective Factor Infusions • Severe Joint Damage and Learning Bleed Pain vs. Arthritis Pain • Moving from On-Demand Treatment to Prophylaxis • Raising a Son with Hemophilia • ER Preparation and Advocating with Confidence • Documenting Bleeds with Apps, Photos, and Infusion Logs • Heavy Menstrual Bleeding and Postpartum Hemorrhage as Real Bleeds • Why Women with Hemophilia Are Still Overlooked • The Importance of HTCs, Data Collection, and Research Hope Charities is committed to advancing education and recognition for women and girls with bleeding disorders. To learn more about our Hope for Her Future initiative and available resources, visit: https://www.hopeforhemophilia.org/hopeforherfuture.html This conversation offers practical tools for women, caregivers, and families navigating bleeding disorders—from documentation habits to stronger advocacy language and long-term joint protection. If you know a woman who has ever been told “it can’t be that,” send her this episode. Follow the podcast and help us continue bringing visibility to women and girls with bleeding disorders. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org.  Support the show

    52 min

  3. FEB 18

    How to Become a Self-Learner: Life Experience From Jorge de la Riva

    We explore how to become a self-learner in hemophilia, from adherence and refills to evaluating factor, non-factor, and gene therapies. Jorge shares candid lessons on transition to adulthood, community support, and choosing treatments that fit real life. • Why ownership of care decisions matters • Adherence as daily practice and mindset • Planning refills and emergency doses with pharmacy • Signals it may be time to review medication • Comparing standard, extended, non-factor and gene therapy • Using lifestyle fit as a decision lens • Learning at chapter and national events • Guidance and hope for newly diagnosed families • Building a comprehensive support network Be part of the conversation at Emerging Therapies, February 24–25. Register now at hopeforhemophilia.org/emerging-therapies Support the show

    25 min

  4. FEB 12

    What Does Patient Advocacy Look Like in 2026?

    We explore how HR1, a prolonged shutdown, and agency reshuffles affect access, affordability, and safety for people with rare and chronic conditions. With Dane Christensen and Jim Romano, we translate the DC process into patient wins and outline how your story drives change. • HR1’s budget mechanics and phase-in effects on healthcare • Medicaid redeterminations and benefit generosity pressures • Blood safety funding is maintained, but the advisory body is dormant • Shutdown delays to bipartisan health bills and why it matters • Premium tax credits, discharge petition, and likely compromise • PBM reform judged by out-of-pocket costs, not headlines • Insurer tactics on third-party aid and accumulators • Patient choice in specialty pharmacy and continuity of care • How to brief Congress with clear, factual stories • 2026 priorities and steady, incremental advocacy Join us for Hope on the Hill, June 10–11. Share your story or get involved: info@hope-charities.org. Learn more at hope-charities.org.  Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org. 🎧 Hit play, share with a friend, and don’t forget to follow! Every listen helps us get these conversations to more people who need them. Support the show

    1h 1m

  5. JAN 31

    Recent reporting on Adverse Events: A Thoughtful Conversation on Safety, Transparency, & Next Steps

    Jonathan James sits down with Dr. Akshat Jain to address the community’s questions following news of a serious adverse event in an extended trial of a new therapy, Marstacimab. They discuss Pfizer’s transparency, the careful investigative process ahead, and how patients can approach this information through open dialogue with their physicians. Dr. Jain provides an important clinical perspective and emphasizes shared decision-making when exploring treatment options. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org. 🎧 Hit play, share with a friend, and don’t forget to follow! Every listen helps us get these conversations to more people who need them. Support the show Support the show

    43 min

  6. 12/08/2025

    She Refused to Stay Silent: Connie Montgomery on Diagnosis After Decades of Dismissal

    A candid conversation with Connie Montgomery charts a lifetime of being dismissed, the car accident that unlocked a Factor VII diagnosis, and the fight to secure prophylaxis. We spotlight bias, culture, and the power of narrative medicine to change outcomes for women with bleeding disorders. • Growing up with unexplained bruising and nosebleeds • Gullah Geechee cultural privacy and silence • Repeated dismissal by clinicians and loss of trust • Heavy menstrual bleeding through two pregnancies • Diagnosis after an ER doctor listened and consulted • Phenotype over lab numbers in rare bleeding care • Securing prophylaxis and navigating insurance barriers • Building trust and health literacy with care teams • Organizing patient power and industry accountability • Compassion that moves beyond empathy into action Help us reach more listeners! Share this episode with your friends and family so no one feels alone. And if you haven’t yet, please like and subscribe. It makes a big difference in getting this content in front of others. Special Thanks to Genentech for sponsoring this episode. Support the show

    58 min

  7. 10/31/2025

    More Than a Carrier: How Unexplained Injuries and Surgery Led Me to a Diagnosis - Amanda Gradzewicz

    We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families. • growing up with a dad with severe hemophilia A  • invisible symptoms in teen years and surgery complications  • being told “just a carrier” versus getting a real diagnosis  • marriage, military life, and finding the right HTC  • parenting a daughter who is a carrier and a son with severe hemophilia  • the role of community events, conferences, and social media  • documenting bruises, bleeds, and periods to advocate for care  • mental health, exercise, and therapy as caregiver essentials  • navigating public life with an invisible disease  • future of treatment, gene therapy, and a hopeful outlook If you haven't already, make sure that you like and subscribe to our channel so that we can continue to provide more educational content just like this! Special Thanks to Genentech for sponsoring this episode. Support the show

    58 min

  8. 10/04/2025

    Women with Bleeding Disorders: Resilience, Hope, and Advocacy with Dr. Danielle Nance

    Ever wondered how a bruised toddler grows up to be a hematologist changing the game for women with bleeding disorders? Dr. Danielle Nance takes us on that journey full of aha moments, hard truths, and some laugh-through-the-tears stories. We’ll chat about missed diagnoses, why words matter, the battle of factor vs painkillers, what imaging really shows, and how to prep for clinic visits like a pro. Plus: parenting through needles, navigating insurance hoops, and building trust with providers (without losing your mind). 🎧 Hit play, share with a friend, and don’t forget to follow! Every listen helps us get these conversations to more people who need them. Special thanks to Genentech for sponsoring this episode of the Hope Unmuted Podcast! Support the show

    2h 19m
See All (28)

Ratings & Reviews

4.8
out of 5
5 Ratings

About

Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.

Information

  • Creator
    Jonathan James
  • Years Active
    2022 - 2026
  • Episodes
    28
  • Rating
    Clean
  • Copyright
    © 2026 Hope Charities
  • Show Website
    Hope Charities