90.9 WBUR - Boston's NPR news station
Top Stories:
PLEDGE NOW
Here and Now with Robin Young and Jeremy Hobson
Public radio's live
midday news program
With sponsorship from
Mathworks - Accelerating the pace of engineering and science
Accelerating the pace
of engineering and science
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.

Please follow our community rules when engaging in comment discussion on this site.
Spotlight

Here & Now resident chef and cookbook author Kathy Gunst shares her list of the best cookbooks of the year.

Robin and Jeremy

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

December 18 Comment

College Counselor: ‘A Deferral Is Not A Denial’

Lisa Micele shares tips for applying to college — especially for students who have been deferred under early decision.

December 18 17 Comments

America’s Political Dynasties

Americans under 38 have only experienced one presidential election that did not involve a Bush or a Clinton.

December 17 2 Comments

Atticus Lish’s ‘Preparation For The Next Life’

The author's debut novel centers on an unlikely romance between an Iraq veteran and a Uyghur from China.

December 17 3 Comments

Diagnosing Ear Infections With Your Smartphone

The CellScope Oto is a clip-on gadget that turns a smartphone into an otoscope — the tool doctors use to check out a patient's eardrum.