lass=”” >On June 16th, 2016, terminally ill patients and their supporters rallied Congress in Washington, D.C., asking lawmakers to give them the right to try experimental drugs not yet approved by the FDA.
If passed by Congress, House Bill 3012 – Right to Try Act would protect the 31 states with right-to-try laws already in place from federal interference, thereby giving terminally ill patients access to drugs still pending the FDA’s final approval.
Among the attendees were patients with Duchenne muscular dystrophy (DMD), spinal muscular dystrophy (SMA), and amyotrophic lateral sclerosis (ALS)—a muscle weakening disorder also known as Lou Gehrig’s disease. All three are currently incurable.
“Most ALS patients don’t have 5 years, most don’t have 2 years,” explained Matt Bellina, a former navy aviator currently fighting ALS. “Right now, as an ALS patient, I have no hope.”
The My Right To Try Rally was sponsored by the Have A Heart Foundation and co-sponsored by the Goldwater Institute.
Watch the full interview above, or click below for downloadable versions. Approximately one and a half minutes. Produced by Joshua Swain. Additional camera by Todd Krainin and Ian Keyser. Music by Podington Bear.