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Dying Patients vs. the FDA: 'Right to Try' Laws Give Hope - And Time

September 25, 2015

Originally written by Alex Manning for

David Huntley was an Iron Man triathlete, a professor emeritus at San Diego State University, a father, and a husband.

In 2013, he was diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s Disease. It’s a death sentence given current science, but there are ways to combat the speed at which it progresses and the pain it causes.

Before he passed away on July 4, 2015 Huntley wanted to try a promising new drug called GM604, but it hadn’t been approved yet by the Food and Drug Administration (FDA). So Huntley was denied access to GM604.

“How is keeping a potentially life saving drug saving my life?,” said Huntley. “The decision to use an investigational drug to fight a fatal disease should be between a patient and his or her doctor.”

Two years ago, The Goldwater Institute, a free-market think tank based in Arizona, designed a model bill for states that would allow terminally ill patients to go around the FDA approval process. The initiative is called “right to try.”

So far, 23 states have adopted a version of right to try and 13 more are actively considering some form of the legislation.

It’s too late for Dave Huntley, but will terminally ill patients in the future have an easier time getting access to experimental drugs?



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