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.

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.
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Show Notes:
In addition to Cheryl Yoder, this episode features interviews with:
<a href="https://www.hopkinsmedicine.org/profiles/details/thomas-crawford">Tom Crawford</a>, Co-Director, Muscular Dystrophy Association Clinic and Professor of Neurology, Johns Hopkins University School of Medicine
<a href="https://medicalethicshealthpolicy.med.upenn.edu/faculty-all/holly-fernandez-lynch">Holly Fernandez Lynch</a>, 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 <a href="https://www.ninds.nih.gov/health-information/disorders/spinal-muscular-atrophy">here</a>. 
To learn more about the ethics issues raised in this episode, visit the Berman Institute’s <a href="https://bioethics.jhu.edu/playinggod/episode-8">episode guide</a>. 
The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at <a href="http://greenwall.org/">greenwall.org</a>.

Life-and-death dilemmas. New medical technologies. Controversial treatments. In playing god? we hear from the patients whose lives were transformed—and sometimes saved—by medical innovations and the bioethicists who help guide complex decisions.

Ventilators can keep critically ill people alive, but when is it acceptable to turn the machines off? Organ transplants save lives but when demand outpaces supply how do we decide who gets them? Increasingly, novel reproductive technologies can help people have babies in ways that are far beyond what nature allows. So, when should such “Brave New World” technologies be introduced and who should control them? 

playing god? is hosted by Lauren Arora Hutchinson, Director of the iDeas Lab at the Johns Hopkins Berman Institute of Bioethics. 

playing god? is a co-production of Pushkin Industries and the Berman Institute of Bioethics at Johns Hopkins University, with generous support from The Greenwall Foundation. New episodes drop every Tuesday.

The Berman Institute has created a guide for each episode where you can learn more about the guests, the history, and the ethics issues at: bioethics.jhu.edu/playing-god

Life-and-death dilemmas. New medical technologies. Controversial treatments. In playing god? we hear from the patients whose lives were transformed—and sometimes saved—by medical innovations and the bioethicists who help guide complex decisions.
Ventilators can keep critically ill people alive, but when is it acceptable to turn the machines off? Organ transplants save lives but when demand outpaces supply how do we decide who gets them? Increasingly, novel reproductive technologies can help people have babies in ways that are far beyond what nature allows. So, when should such “Brave New World” technologies be introduced and who should control them? 
playing god? is hosted by Lauren Arora Hutchinson, Director of the iDeas Lab at the Johns Hopkins Berman Institute of Bioethics. 
playing god? is a co-production of Pushkin Industries and the Berman Institute of Bioethics at Johns Hopkins University, with generous support from The Greenwall Foundation. New episodes drop every Tuesday.
The Berman Institute has created a guide for each episode where you can learn more about the guests, the history, and the ethics issues at: <a href="http://bioethics.jhu.edu/playing-god" data-saferedirecturl="https://www.google.com/url?q=http://bioethics.jhu.edu/playing-god&amp;source=gmail&amp;ust=1697728099647000&amp;usg=AOvVaw1qmlNSYneUfyWNEnZchoSU">bioethics.jhu.edu/playing-god</a>

playing god?

Miracle Drugs, Million Dollar Price Tags

https://api.omny.fm/orgs/e73c998e-6e60-432f-8610-ae210140c5b1/clips/e740c808-fbf4-48d8-aa5c-b0b201266094/transcript

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