Cheryl Yoder’s son Jase, was born with an incurable rare disease called spinal muscular atrophy (SMA), which meant he was unlikely to live beyond two years old. Jase managed to get a spot in a clinical trial for an experimental drug. It halted the disease and allowed him to grow up as an active little boy–a miracle cure.
A growing list of uniquely tailored drugs can treat, and even cure, some debilitating and fatal diseases. But often these so-called “miracle drugs” can cost a fortune. In this episode: why miracle drugs cost so much, why it’s so hard to do anything about the costs and how challenging it is to work towards equitable access for patients who can benefit from them.
Show Notes:
In addition to Cheryl Yoder, this episode features interviews with:
Tom Crawford, Co-Director, Muscular Dystrophy Association Clinic and Professor of Neurology, Johns Hopkins University School of Medicine
Holly Fernandez Lynch, Assistant Professor of Medical Ethics and Health Policy, University of Pennsylvania
You can learn more about spinal muscular atrophy, learn about the latest research, and find resources for those affected by the disease here.
To learn more about the ethics issues raised in this episode, visit the Berman Institute’s episode guide.
The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.