Hope Charities

Jonathan James

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

  1. 3H AGO

    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
  2. 04/07/2025

    Healthcare in Crisis: The Truth About PBMs with Dr. Madelaine Feldman

    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 info@hope-charities.org to help drive policy change. Support the show

    1h 9m

Ratings & Reviews

4.8
out of 5
5 Ratings

About

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