Bill inspired by boy with Duchenne awaits governor’s signature
By NEAL WAGNER / Managing Editor
MONTGOMERY – A bill inspired by a 10-year-old Shelby County boy who has Duchenne muscular dystrophy is now awaiting Alabama Gov. Robert Bentley’s signature after the state House of Representatives passed the bill out of the Legislature on May 28.
The House passed “Gabe’s Right to Try” bill by a vote of 97-0 after state Rep. April Weaver, R-Brierfield, and state Sen. Cam Ward, R-Alabaster, worked with 10-year-old Shelby County resident Gabe Griffin and his supporters to back the bill.
Ward introduced the bill in the state Senate in early April in an effort to help Griffin, who has a rare genetic mutation known as Duchenne muscular dystrophy, and other individuals facing terminal illnesses.
If signed by Bentley, the bill will allow terminally ill patients to have access to experimental medications not approved by the federal Food and Drug Administration. The bill will not require insurance companies to cover the cost of the experimental medications, would only apply to phase I clinical trial-approved drugs and would place no liability on the drugs’ manufacturers.
As a result of Duchenne, Griffin is expected to be in a wheelchair in the next few years and die when he is about 20.
“At 10 years old, Gabe walks, hugs, breathes and feeds himself like any other typical child that age, but that will be taken away in the next few years if we don’t find a cure,” Griffin’s father, Scott, wrote in a statement. “Traci and I are willing to accept all risks to save our son and we will do anything to keep from having to put him in a wheelchair in a couple of years.”
Weaver said the bill could have a significant impact on Gabe and other Alabama residents fighting terminal illnesses.
“Gabe is a special young man, and an inspiration to so many, and I’m hopeful this law will bring him and his family one step closer to a cure,” Weaver wrote. “The medical research community is on the verge of developing personalized treatments that could help children like Gabe, and we must do everything we can to help them win their fight against time.”
While there currently is no treatment for Duchenne, Ward said he is hopeful a medical breakthrough will occur soon.
“The fight for Gabe doesn’t stop with the passage of this bill, unfortunately, no treatments exist that Gabe could access to treat his form of Duchenne,” Ward wrote. “But when a medical breakthrough does occur, and I believe it will in the next couple years, we will know that we have done all we can here in Alabama to give Gabe his chance to try.”