On this episode of the podcast, Terry and Bob discuss the recent recommendations by the Medicaid and CHIP Payment and Access Commission (MACPAC) that threaten patient access to medications that have received the FDA’s accelerated approval designation. These breakthrough medicines have helped save the lives and livelihoods of countless patients with rare and chronic diseases. They also offer hope for future innovative breakthroughs that may provide cures. Yet drawing on a mistaken belief that these therapies are still speculative, MACPAC is demanding drugmakers pay higher rebates to keep them on the market — purely a way to extort more money from drug companies while hurting patients and caregivers. 

Bob interviews Dr. Rafael Fonseca, a multiple myeloma oncologist and the interim director of Mayo Clinic Cancer Center, who discusses the threat that ICER poses to emerging therapies for multiple myeloma. He highlights the fruitful research and development record for multiple myeloma therapies, including the latest CAR-T treatment recently approved by the FDA. CAR-T uses patients’ own T-cells to attack cancer cells in the same way they’d attack the common cold virus. Dr. Fonseca worries that ICER and even the public sector can disincentivize cutting-edge research for medications that hold so much promise for patients. He concludes that it is very hard, if not outright impossible, to create value models like ICER is trying to do for these vital medications.

Patient correspondent Kate Pecora interviews multiple myeloma patient and advocate Dale Hopkins on how designer drugs like CAR-T could be a game-changer for his treatment regimen. Dale discusses his long treatment journey with this condition, yet notes that his doctors have made his life very easy, seeing him as a person, not just a patient. He highlights his incredible support system and how his community has helped him fight this cancer and stay brave and strong. He is very excited about the next phase of his treatment: CAR-T therapy, which he calls almost like science fiction. 

Listen HERE