MONTGOMERY, Ala. — The Alabama legislature gave final passage Thursday to the “Gabe’s Right to Try” law, inspired by 10-year-old Gabe Griffin, an Alabama boy with Duchenne’s muscle-wasting disease.
The right to try legislation will allow new medications already in the human trial portion of FDA approval to be tried by patients with terminal, life-threatening illnesses.
“At 10 years old, Gabe walks, hugs, breathes, and feeds himself like any other typical child that age,” said Gabe’s father, Scott Griffin, “but that will be taken away in the next few years if we don’t find a cure. Without a cure, Gabe is expected by doctors to be in a wheelchair by the time he is 12 years old and lose his life around the age of 20. 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.”
Though the bill is named in honor of young Gabe, his journey to healing is far from over.
Caused by an absence of a protein that helps keep muscles intact, Duchenne’s disease is a fatal disorder occurs during early childhood and causes weakness and muscle wasting that only worsens over time. There is currently no cure, but Gabe’s family and the sponsors of the bill believe that breakthroughs are just around the corner.
“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,” said Senator Cam Ward (R-Alabaster), the bill’s sponsor in the Senate. “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.”
“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,” said April Weaver, the House sponsor of the legislation. “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.”
Last year to raise awareness of Gabe’s condition and the importance of right-to-try legislation, the Griffin family’s Hope 4 Gabe foundation organized a 3,400 mile bike ride across the country with Alabamian Michael Staley, former chief of staff to Republican former Congressman Spencer Bachus.
“The U.S. House and Senate are working on legislation to modernize drug development, approval, and delivery,” Staley said in a press release Thursday morning. “We are thrilled that Alabama has added its name to the growing list of right to try states and look forward to working with Members of Congress to ensure state right to try laws are understood and incorporated into federal law.”
With a final vote of 97-0 in the House, the bill made it through both chambers without a single dissenting vote.
Alabama will be the 19th state to adopt right to try legislation once the bill is signed into law by Governor Robert Bentley (R).
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— Elizabeth BeShears (@LizEBeesh) January 21, 2015
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