Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
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Recent Podcasts:
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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. |
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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 Special Thanks to Genentech for sponsoring this episode. |
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 |
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In today's episode 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 |
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. Learn more about this important announcement on our website. https://www.hopeforhemophilia.org/ind... For additional context, see the related video below featuring Jonathan James and Dr. Akshat Jain discussing patient questions, transparency, and shared decision-making in a previous episode. |
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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 Special Thanks to Genentech for sponsoring this episode. |
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 Special Thanks to Genentech for sponsoring this episode. |
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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). Special thanks to Genentech for sponsoring this episode of the Hope Unmuted Podcast! |
Dr. Mattie Feldman, rheumatologist and healthcare policy expert, exposes how Pharmacy Benefit Managers have evolved from administrative entities into powerful forces that control medication access, often prioritizing profits over patients.
• Pharmacy Benefit Managers (PBMs) originally handled prescription coverage but now control what medications doctors can prescribe and patients can access • The "big three" PBMs—CVS Caremark, OptumRx, and Express Scripts—now control 80-85% of all prescriptions in the United States • PBMs often prefer higher-priced medications because they generate larger rebates, contributing to rising drug costs • Vertical integration has created conflicts of interest where the same companies own insurance plans, PBMs, specialty pharmacies, and sometimes even drug manufacturing • Utilization management tools like step therapy and prior authorizations have become barriers between doctors and patients • PBMs force patients to use mail-order specialty pharmacies that often provide inferior care compared to community specialty pharmacies • Legislators are working on bipartisan bills like "People Before Monopolies" that would require PBMs to divest from pharmacy ownership • Patient stories and advocacy are crucial for creating meaningful change in the healthcare system Share your pharmacy access or medication challenges with us by emailing [email protected] to help drive policy change. |
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This episode focuses on the often-overlooked experiences of women with bleeding disorders. Dr. Akshat Jain discusses the importance of advocacy, the need for gender-sensitive healthcare approaches, and how quality of life relates to treatment accessibility, emphasizing the urgency of creating a supportive environment for patients.
• Dr. Jain’s background and expertise in bleeding disorders • Advocacy importance for women with bleeding disorders • Cultural stigmas and challenges women face in seeking care • Quality of life concerns in the context of bleeding disorders • The role of mental health support in comprehensive care • Managing pregnancy risks in women with bleeding disorders • The necessity of community advocacy and proactive outreach |
In this podcast episode interview, our host Jonathan James discusses the challenges and critical changes needed to improve the diagnosis and access to treatment for women with bleeding disorders with Dr. Tamuella Singleton.
In this conversation, we discuss important questions such as: "What steps are being taken to improve equity and access to healthcare for women and underserved populations?" "What role does genetic testing play in diagnosing and managing bleeding disorders?" "How can patients and healthcare providers better advocate for comprehensive care and education?" "What are your hopes for future research and legislative changes impacting people with rare bleeding disorders?" |
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What if the key to saving countless women's lives is understanding their monthly cycles? Join us for an eye-opening conversation on the Hope Unmuted Podcast with Dr. Bivin Von Almen, an esteemed obstetrician with over 30 years of experience. From his journey through the medical landscapes of Texas and Louisiana to his impactful work at Charity Hospital, Dr. Von Almen brings invaluable insights into the often misunderstood world of women with bleeding disorders. We unpack the stark reality of these conditions, like von Willebrands disease, which often go undiagnosed, leaving many women to suffer in silence.
Charles Runions lives with Hemophilia B and shares stories from his journey of childhood to independence while living with a rare bleeding disorder. In this podcast episode, we discuss the challenges of growing up as a child, transitioning to adulthood, managing a career, and making wise health decisions
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Ivan Giron helped advocate for his daughter Naomi to gain a diagnosis and ongoing treatment after learning more about women having a bleeding disorder. After Ivan realized that his daughter was having abnormal bleeding during her minstrel cycle each month, they started to educate themselves on how the genetic disorder could be passed down to his daughter, and while it looked different for her than it did for him, her need for treatment became more focused after further research. Ivan and Naomi have grown closer together as a family and are now on a mission to advocate for other women to challenge outdated clinical standards for women with bleeding disorders.
In this podcast Jonathan James discusses upcoming event plans and patient resources with Joe Ferguson, Tesia Nagorka, and Suzi Cannon.
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In this episode, we talk about the history of the Hemophilia community and the many transitions of treatment and therapy through the last 30 years in the United States. Trish Underland's background as a nurse care coordinator at the Hemophilia & Bleeding Disorders Treatment Center at Johns Hopkins HTC shares her experiences of working with patients to improve outcomes. Trish provides an excellent perspective on the important role that plasma-derived products and PK studies play for people with bleeding disorders and the vital role patients play in choosing their products and working together as a team with their providers.
In this episode, Jonathan James interviews Maxwell Hunter who is a quality assurance expert in plasma collection. He shares about current therapies available, technology changes, and product safety.
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Rodney Dalrymple shares his journey of living with Hemophilia and overcoming the challenges of treatment with an inhibitor. In this podcast episode we discuss the importance of overcoming the mental challenges associated with growing up with a rare disease, and the vital role of your support systems in community, family and faith
When most people are diagnosed with a rare disease like Hemophilia it is common to experience fear of the unknown, but when that diagnosis happens overseas in a foreign country with doctors and nurses who don't speak your language the uncertainty is insurmountable. In this episode, Jonathan James interviews Brittnee Vasil who was living overseas with her husband while deployed in the Navy and experienced the most frightening time of her life. She shares her story and how she overcame such insurmountable odds all while keeping her faith.
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