Episode 8: Miracle Drugs, Million Dollar Price Tags

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.


Cheryl Yoder

Cheryl’s story includes two versions of Spinal Muscular Atrophy: the pre-treatment reality with her daughter who lived 16 months, and the new we-have-options reality with her son who is eight years old and thriving. Cheryl lives in Delaware with her husband and their five sons. She experiences no lack for boy-driven adventure and is doing her level best to keep everyone fed.

Tom Crawford, MD

Co-Director, Muscular Dystrophy Association Clinic and Professor of Neurology
Johns Hopkins University School of Medicine

Holly Fernandez Lynch, JD, MBe

Assistant Professor of Medical Ethics and Health Policy
University of Pennsylvania

Additional Resources

You can learn more about spinal muscular atrophy, learn about the latest research, and find resources for those affected by the disease here.

The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.

Continue the Conversation

We want to hear your thoughts about this episode. Please share them using the form below and your comments could be posted on this page and made accessible to other listeners.