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

Denied While Insured? Kim Czubaruk Explains Alternative Funding Programs

You pay for insurance—so why are patients still being denied medication? In this important episode, Jonathan James sits down with healthcare policy advocate Kim Czubaruk to unpack Alternative Funding Programs (AFPs), how they work, and why more patients are facing treatment delays, denials, and confusion while still paying for coverage. They discuss how some employer-sponsored health plans exclude specialty medications or trigger behind-the-scenes denials while steering patients into outside vendor programs. Kim explains why this can create dangerous gaps in care, emotional distress, and added burdens for families already managing chronic illness. Topics include: • What Alternative Funding Programs are • Why patients can be denied while insured • Treatment delays and access barriers • Impact on bleeding disorders, cancer, and chronic illness • Employer plan risks and responsibilities • What advocates are doing to fight back If you’ve ever battled insurance for medication access, this episode is for you. 🎧 Hit play, share this episode with someone navigating insurance challenges, and don’t forget to follow. Every listen helps us bring patient-first conversations on healthcare access to more people who need them. 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 [http://www.hope-charities.org/].  Support the show [https://www.hopeforhemophilia.org/donate.html]

75% of the World Lacks Treatment: The Global Hemophilia Crisis | Save One Life

A child with hemophilia should not have to live in constant pain because of where they were born—but for much of the world, that is still reality. In this episode, we sit down with Cindy Komar of Save One Life on World Hemophilia Day to discuss the global treatment gap and what “access to care” really looks like for families choosing between basic needs and life-saving treatment. We discuss: • The Global Hemophilia Treatment Gap and Why 75% Remain Undiagnosed or Untreated • Differences Between U.S. Prophylaxis and Emergency-Only Care Worldwide • How Save One Life Provides Direct Financial Assistance to Families • Child Sponsorship and What $35/Month Can Do • Donating Unused Medication to Save Lives • Microenterprise Grants Empowering Women and Families • The Reality of Poverty, Stigma, and Limited Access to Care • Ways to Get Involved Through Advocacy, Fundraising, and Awareness Save One Life works with partners in developing countries to provide financial support, medication access, and long-term solutions that help families move from survival to stability. To learn more or get involved, visit: https://saveonelife.net If this conversation moved you, share it with someone who wants to make a difference—and subscribe for more conversations on bleeding disorders and global access to care. 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 [https://www.hopeforhemophilia.org/donate.html]

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 [https://www.hopeforhemophilia.org/donate.html]

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 [https://www.hopeforhemophilia.org/donate.html]

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 [https://www.hopeforhemophilia.org/donate.html]