On this episode of the podcast, Terry and Bob discuss the $3.5 trillion spending bill before Congress and the included provision known as HR 3 that would allow the federal government to implement price controls on prescription drugs. They argue that this proposal is counterproductive without a broader discussion of the role that pharmacy benefit managers and insurance companies play in driving up the cost of medications.
They point out how HR 3 threatens innovation and would implement restrictive formularies that would reduce access for those who need it most. In contrast, they highlight more promising government proposals for the rare disease community, including capping out-of-pocket expenses for those on Medicare Part D.
Terry, Bob, and Kate discuss the lack of Covid treatments and the overrun hospitals resulting from people not knowing where else to turn. They highlight the story of an Alabama man who died after being turned away from 43 hospitals. Kate shares her story of trying to get care during the pandemic and contending with overcrowded hospitals. She waited for several hours to get admitted for chest pain and discusses her level of frustration about the access hurdles facing patients without Covid.
Kate interviews Shivani Vyas, host of The Rare Disorder Podcast, about her journey in public health advocacy. Shivani tells the story of her grandmother who passed away from a rare form of pancreatic cancer and how that experience taught her that all patients need a voice. She discusses how hard it is for many rare disease patients to access resources and highlights her efforts to usher in new codes associated with rare disease conditions to help advance medical understanding and treatments.