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.
Robin and Jeremy

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

May 27 Comment

How Trump, Clinton And Sanders Change Their Voices To Win Over Voters

Charisma is a crucial component of a politician's appeal to voters. But there's more than one way to inspire confidence.

May 27 52 Comments

New York Considers A Ban On Declawing Cats

Some pet owners have routinely had their cats declawed. But opponents say the procedure isn't so simple.

May 27 3 Comments

New Drug-Resistant Bacteria Seen In U.S. For The First Time

The CDC's director has expressed concern, saying it shows that we're close to the "end of the road" for antibiotics.

May 26 6 Comments

As Lethal Heroin Overdose Numbers Rise, Families Find Solace In Organ Donation

Organ banks around the country have noted an increasing number of organs from donors who have died of overdoses.