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Monday, December 24, 2012

Update: ALS Patients Attempt Home-Brewed Treatments

45-year-old Ben Harris was diagnosed with ALS last year, and now is taking part in a DIY trial. (Courtesy: Ben Harris)

45-year-old Ben Harris was diagnosed with ALS last year, and now is taking part in a DIY trial. (Courtesy: Ben Harris)

A group of people suffering from Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease have started cooking up their own drug therapies in do-it-yourself (DIY) drug trials.

Frustrated with the slow pace of clinical drug trials, they say they don’t have the luxury of waiting.

About 30-thousand people in the U.S. have ALS, which gradually robs them of the ability to move, speak and, eventually, breathe on their own. It’s typically fatal within 3 to 5 years.

Ben Harris of Bloomington, Ind. was diagnosed with ALS last year. He had taken part in an FDA-approved trial for a compound called NP001 made by the drug company Neuraltus. But when the trial ended, so did his treatments.

So Harris joined the DIY drug trial movement. He and others figured out that the main ingredient in NP001 is sodium chlorite, so they began injecting themselves with it and sharing the results online.

Harris and his brother are now working on a documentary about the D.I.Y. drug trial movement, and he recently sent us this update on his condition:

I am no longer able to eat solid foods and can swallow liquid nutrition with difficulty. I can no longer speak and walking is extremely difficult. My disabilities are now very obvious. My progression is following the typical course almost exactly and the approximate date of my death is now eerily predicable. Although I classify as a “slow” progressor at the lower 25th percentile, that is not saying much, I have less than a year to live, how much less depends on the end of life choices I make. The total time I will live with disease is about 3 years.

Although NP001/Sodium Chlorite stopped my progression for a short time, I quickly caught up to where I would have been without it. I have tried many DIY experiments since then and none of them have made a dent in my rate of progression. But the important thing is that my attempts are recorded. This is what I have been fighting for. As I say on the signature of all of my posts “If it is done in secret, it is done in vain.” No experiment is a failure if the results are recorded and shared.

This story originally aired May 21, 2012.

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Robin Young and Jeremy Hobson host Here & Now, a live two-hour production of NPR and WBUR Boston.

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