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
Tuesday, September 11, 2012

Update: ALS Patients Brew Up Their Own 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 in 2011, and now is taking part in a DIY trial. (Courtesy: Ben Harris)

Back in May, we spoke to 45-year-old Ben Harris, who suffers from ALS, or Lou Gehrig’s disease.

The disease  robs people of the ability to move, speak and eventually breathe on their own. Most patients die within two  to five years of their diagnosis.

Ben is one of a number of patients who are trying to come up with their own cure because they’re frustrated with the five- to seven-year long FDA drug approval process.

The group uncovered the key ingredient in a trial drug and started taking it themselves.

Ben emailed us recently to tell us that his brother, Jason, is working on a documentary about the do-it-yourself drug trial movement.

“It is about patients with a serious disease pushing aside the FDA and the pharmaceutical companies and taking over the drug trial process by running their own experiments on themselves by themselves,” Ben said.

Jason Harris is raising money for the film on the fundraising website Kickstarter.

Ben believes that the DIY community of patients is his best hope for a cure.


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

Robin Young and Jeremy Hobson are hitting the road. Our Tumblr brings you behind the scenes of our election coverage.

Robin and Jeremy

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

February 10 Comment

A Look At Prisons Around The World, With A Spotlight On Our Own

Baz Dreisinger visited prisons in nine countries and wrote about her experiences in a new book, "Incarceration Nations."

February 10 4 Comments

Needle Exchange Tries To Keep Pace With Rising Drug Use

Facilities like this one on Skid Row could receive a boost now that Congress has lifted a ban on federal funding.

February 9 13 Comments

Aviation Factory Struggles To Attract Young Workers

Business is booming at the GE Aviation plant in New Hampshire, but it's having trouble drawing young workers.

February 9 13 Comments

Opiate Addiction In New Hampshire

Robin Young visits a clinic called Recover Together that charges patients $65 a week for group therapy and a Suboxone prescription.