MONTGOMERY, AL (WBRC) - Legislation inspired by a 9-year-old Alabama boy with a rare genetic disease has passed the state's House of Representative Health Committee days after passing in the Senate.
Senate Bill 357, also known as the "Right to Try Bill," would allow doctors and terminally ill patients to collaborate to access safe medicines that show promise but have yet to complete the Federal Food and Drug Administration process. Several other states have passed similar laws.
Insurers would not be required to cover the cost of treatment and only drugs that the FDA have ruled not to be unreasonably toxic would be permitted.
"Terminal patients should have a right to try, and as a father and an elected official I believe we should do everything we can to help remove unnecessary bureaucratic red tape from the process so that doctors and terminally ill patients can determine the best course of action in each individual situation," Senator Cam Ward said.
The Alabama Senate passed the bill on Thursday, April 30 with a 29-0 vote. Supporters believe there's a good chance the House will pass the bill and Governor Robert Bentley will sign it into law.
Nine-year-old Gabe Griffin of Shelby County inspired the bill. He suffers from a genetic mutation called Duchenne Muscular Dystrophy. It's caused by the absence of a protein that keeps muscles intact.
"At 9 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. Without a cure, Gabe is expected by doctors to be in a wheelchair by the time he is 10 to 12 years old and lose his life around the age of 20," Gabe's dad Scott Griffin said.
Gabe has two older brothers and a twin sister, none of whom are affected by Duchenne.
Griffin says shielding Gabe from the impact of the disease is one thing, but he spoke candidly about his son's condition so people will understand what's at stake.
"To actually have to sit down and tell your son that 'You're dying' is not something that a father is ever prepared to do. And that's one of the main things that keeps me fighting," he said.
Health Committee Chair April Weaver (R-Brierfield) is leading the effort to see the bill become law.
"Gabe has been to Montgomery multiple times to meet legislators, and everyone who meets him wants to help," Weaver said.
"We all understand the importance of enabling a patient and a doctor to do everything possible to save a life, and this bill creates an important tool by permitting access to breakthrough treatments for dying patients," she added.
Gabe met Gov. Bentley in August 2014 during a charity event called Ride4Gabe.
The Griffin family heads a foundation called Hope for Gabe.