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I know it's probably too late for me. I made my peace with that. I need to know before I die that my children find themselves in this unenviable position.

This nation that I proudly served will respect their liberties and the right to make their own decision about their medical treatments.

Thank you for having me. God bless.

Matt Belina is a father of three boys and a former U.S. naval aviator.

In 2017, he testified at a congressional hearing

to advocate for dying patients

who want access to experimental drugs.

At that point, his speech was slightly slurred

by his Lou Gehrig's disease.

It's a fatal condition with no treatment.

It destroys the nerve cells and the muscles they control.

Slowly, every part of the body stops working. Letting patients like Matt, who have no other options, use these experimental

medicines, seems like it should be easy. But it's not that straightforward. And the critics, the people who oppose making them widely available,

aren't always who you would expect.

Welcome to Prognosis, a podcast about innovation in medicine and science.

I'm your host, Michelle Faye-Cortez,

and today we're going to explore what people do when

they're desperate for a chance to try an unapproved drug.

...