S2:EP17 | Organ Transplants and Financial Strain
On this episode of the podcast, Terry and Bob discuss the hurdles that organ recipients face, particularly in their postoperative treatment, which requires them to relocate close to the specialized medical centers coordinating their care. Amid the physical and emotional toll of surgery, many patients also have to juggle apartment searching, moving, and financing a second home or apartment while they recover. And insurance companies refuse to cover these expenses.
They also discuss H.R. 3, the Lower Drug Costs Now Act, which would impose government price controls on prescription medications. By setting price ceilings on drugs, H.R. 3 threatens investor returns, meaning drugmakers would have a much more difficult time raising the billions of dollars needed to fund cutting-edge medicines. As Bob points out, these investor funds will instead go to the next relatively meaningless consumer product like a new video game. Terry notes how this bill is just the latest in a string of policies that threaten patient access to new medications. Recently MACPAC recommended that Congress allow states to curtail their coverage of medicines with FDA accelerated approvals, hurting the patients who need these most.
Terry interviews Denise Redeker, founder and CEO of Heartfelt Help Foundation, who discusses her charity to help organ recipients cover the costs associated with relocation after their care. She tells her story of getting a heart infection that required her to get a heart transplant. She explains how she was forced to relocate to Silicon Valley to be close to her treatment center and the high associated costs after her procedure. She highlights how her nonprofit works with local lodging options to secure inexpensive housing for organ recipients. Her work helps patients avoid serious transplant delays when they can’t afford associated relocation costs.
Patient correspondent Kate Pecora interviews Richard Sperry, who tells his emotional story of being misdiagnosed with ALS. He explains his symptoms, diagnoses, and the emotional situation of discussing his medical condition with his family. Ultimately, Richard explains that ALS was a misdiagnosis, and he actually has a rare auto-immune disorder that’s treatable. Nevertheless, he’s still an active member of the ALS community, advocating for objective criteria for disease progression.