Photo by Roy Williams.
Gabe Griffin
Scott Griffin, standing behind his son Gabe, center, and two of his friends, Anthony Lanzi, left, and Braden Macon, right.
As 10-year-old Gabe Griffin bounced a basketball with his friends in mid-June, few people would ever figure this energetic young boy was battling a crippling disease that could put him in wheel chair within two years.
“That’s my Dad,” a smiling Gabe said as his father, Scott Griffin, was being interviewed by 280 Living.
Scott Griffin, whose family lives in Highland Lakes, almost chokes up as he talks of a new Alabama law that he hopes could save his son and others fighting deadly ailments.
In the fall of 2014, Scott Griffin of Highland Lakes began lobbying members of the Alabama legislature in pursuit of a bill allowing the use of experimental drugs. It could save Gabe’s life.
The hard work paid off in early June, when Alabama Governor Robert Bentley signed the Gabe Griffin Right To Try Act into law. The legislation gives terminally ill patients like Gabe access to medicines that have passed Phase 1 of the Food and Drug Administration approval process, but are not yet on pharmacy shelves.
Gabe, who turned 10 in May, has been the face of the Right to Try effort in Alabama. He was diagnosed at age three with a rare form of muscular dystrophy called Duchenne. Patients who have Duchenne are typically wheelchair-bound by age 12 and have a life expectancy of just 17 to 20 years.
“When he was diagnosed, it was devastating,” Griffin said. “Duchenne is 100 percent fatal, most people who have it die by age 17. There is no cure.”
In an interview after the bill was signed into law by Bentley, Griffin expressed appreciation to the governor, State Sen. Cam Ward and State Rep. April Weaver, who sponsored the senate and house versions of the bill.
“I don’t know if this Right To Try law will save Gabe’s life or not, but at least he has a better chance now,” Griffin said. “If not, what a great legacy for our son to leave behind if this law saves the life of just one person down the road.”
Alabama becomes the 19th state to enact Right to Try laws, which allow use of drugs in development that could save or lengthen lives of patients who will no longer have to wait years for the FDA to finish its final approval process.
The legislation has been introduced in 17 other states this year. The national bipartisan effort to give terminally ill Americans access to investigational medications is being led by the Goldwater Institute.
“Americans shouldn’t have to ask the government for permission to try to save their own lives,” said Darcy Olsen, president of the Goldwater Institute. “They should be able to work with their doctors directly to decide what potentially life-saving treatments they are willing to try. This is exactly what Right To Try does – it removes barriers that limit medical practitioners from providing care they are trained to give.”
The FDA has a process that allows people to gain access investigational medicines, but fewer than 1,000 people a year receive help. Others die while waiting on their approval. The FDA recently announced plans to shorten the application form.
Griffin began advocating for passage of the Gabe Griffin Right to Try bill a year ago, after returning from the Ride for Gabe bike ride from Oregon to the state capitol in Montgomery. The ride was a chance to raise awareness of how experimental drugs could save the lives of terminally ill patients like his son.
“The Right to Try movement has been in place across the country for years,” Griffin said. “We decided 2015 would be the year we would go for getting the law enacted in Alabama.”
Experimental drugs give Gabe a chance, Griffin said. Without them, Gabe could be in a wheelchair in two years and dead by age 17.
Griffin said he and his wife have their good days and their bad days, but are relying on their faith and the strength of their son Gabe.
“It’s not for us to ask why or feel sorry for ourselves,” Griffin said. “This has caused us to put life in perspective. I’ve learned to slow down and enjoy life. We have a Hope for Gabe website. This new law brings hope to others as well.”
