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One ALS Patient’s Fight For The ‘Right To Try’

An ALS Patient's Fight For The Right To Try

David Huntley was an avid traiathlete when he was diagnosed with ALS in 2013. Now he's fighting for the right to try experimental drugs to slow the progression of this fatal disease.

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Assemblymember Ian Calderon talks about Assembly Bill 159.

Editor's Note: David Huntley passed away July 4, 2015. This is a profile KPBS did on Huntley in March 2015.

In 2012, while training for a half-Ironman race in Canada, David Huntley started experiencing twitching in his muscles and unusual cramping in his legs.

Huntley, who had completed the Ironman New Zealand and the Boston Marathon in 2011, is also a scientist who taught at San Diego State University. He started looking into his symptoms and by the end of 2012 suspected he had ALS, commonly known as Lou Gehrig's Disease. An official diagnosis came in June 2013.

Amyotrophic lateral sclerosis is a degenerative motor neuron disease familiar to many because of the viral Internet "Ice Bucket Challenge," which raised millions of dollars for the ALS Foundation.

Huntley is now confined to a wheelchair. He is unable to run, walk or even speak. He communicates with the aid of text-to-speech software on his iPad.

"Based on my progression, I will pass in the next six to 12 months," Huntley said. "There are no drugs in the pipeline for approval in that window, and most of the drugs under investigation at best treat a symptom and not the disease."

But Huntley still has hope.

A drug called GM604 aimed at fighting the progression of the disease has shown promising results in phase two of a clinical trial.

"Despite the small size of the trial, the patients treated with GM604 demonstrated statistically significant improvements in an important clinical measurement (the amount of air that the patient can force out of his lungs) as well as in three highly sensitive 'biomarkers' that indicate the extent of the underlying disease," said GM604 drugmaker Genervon in a statement.

But GM604 has not yet been approved by the U.S. Food and Drug Administration. Huntley has joined other ALS patients and their families to petition the FDA to fast track GM604.

But Huntley and others may not need the FDA's approval to take GM604.

California Assemblyman Ian Calderon introduced a "right to try" bill in January, which would allow terminally ill patients the right to try experimental medication. The bill is expected to be heard by the Assembly Health Committee in April.

Colorado, Michigan, Missouri, Louisiana and Arizona have already passed similar laws.

“If it came to one of my family members or even myself, I feel like I should have the right to live in a state that allows me to in my greatest time to need to swing for the fences and try and save my own life,” Calderon said. “And at the root of it, that’s what this legislation is.”

But some in the medical community are concerned that the "right to try" may have a negative effect on drug testing.

Gary Firestein, a rheumatologist and director of the Clinical and Translational Research Institute at UC San Diego, said if this legislation becomes law it could hurt the ability to run clinical trials.

"That's bad because you lose the ability to assess the efficacy of drugs," Firestein said.

He pointed to what happened with the HIV drug AZT in the 1980s.

People were poorly informed about the safety versus efficacy of AZT, he said. Many believed that AZT was toxic and harmful, and they ended up hurting themselves in the long term by stopping AZT treatment and taking non-FDA approved medications.

"These are all complicated issues," Firestein said. "If you narrow it down to complicated cases when people really do have a fatal disease, it's pretty hard to argue against their right to try experimental medication."

The answer is not so complicated for Huntley.

"GM6 has been given to 32 healthy volunteers, nine ALS patients, 26 stroke victims and four Parkinson's disease patients with no adverse events," Huntley said. "The safety of GM6 has been demonstrated. But even if there was not such evidence of safety, I would want all ALS patients to have access to GM6 because our disease is 100 percent fatal, and the tolerance of potential risk versus reward should be a decision left to the patient in consultation with his or her doctor."

Genervon representatives met with the FDA in February to request accelerated approval for GM604 and is awaiting a response.

One ALS Patient's Fight For The 'Right To Try'

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