On this episode of the podcast, Terry and Bob discuss funding for rare diseases and how important research and development is to develop new cures. They point out that before you worry about coverage for drugs you have to develop them. Yet doing so requires immense amounts of funding. In the rare disease space, funding is in short supply.
They discuss the problems with pharmacy benefit managers, how they are responsible for rising drug prices, and how they collude in secret contracts that drive prices up for employer-based health plans and patients.
Terry interviews Dawn Ireland, President and Founder of Congenital Diaphragmatic Hernia (CDH) International, who explains how rare disease organizations harness the power of grassroots advocacy to raise support for their community. She shares how she launched the first CDH organization from her living room over twenty years ago, their ongoing successes, and the road ahead. She discusses the struggles with funding and how venture capital is needed to find treatments for this condition.
Kate Pecora interviews Zach and Shelby Gallegos, who share the story of their nearly one-year-old daughter, Reagan, who is a CDH survivor. They give listeners a glimpse into their lives and the challenges of this rare congenital disability. They explain how they navigate this serious condition and their road to patient advocacy.
Finally, Terry highlights the recent Patients Rising biosimilars panel discussion, highlighting how prescription drug rebates drive an affordability crisis for patients.