Family’s fight to save son sparks state senate ‘Right to Try’ bill

Originally published in WBRC 6 Alabama

SHELBY COUNTY, AL (WBRC)-A family’s fight to save their son is the focus of state senate bill that would allow terminally ill patients more treatment options.

Senate Bill 357 is so-called “Right to Try” legislation that an Alabama Senate committee will consider Wednesday afternoon. It would “authorize a terminally ill patient to use a drug or device that has completed phase 1 of a clinical trial under certain conditions.”

Gabe Griffin, a 9-year-old boy from the Highland Lakes subdivision of Shelby County, is the story that drives “Right to Try” in Alabama. Gabe has a rare form of muscular dystrophy, called Duchenne(pronounced, DO-shin). Gabe’s father, Scott, said Wednesday that he, his wife and Gabe will be at an hours-long appointment at Children’s of Alabama in Birmingham as the senate prepares to discuss the bill.

“He’s 9 years old today, and if you were to look at him, he walks, he runs, he does a lot of the things that normal boys do,” Scott Griffin said. “But, over time, his muscles are dying on the inside. So between the ages of 10 and 12, he’ll be wheelchair bound, and then between the ages of 17 to 20 or 22 years old, he’ll more than likely lose his life.”

Gabe turns 10 next month, and dad Scott says Gabe is unaware of the seriousness of his condition, that “there has never been a single survivor of this disease.” Gabe has two older brothers and a twin sister, none of whom are affected by Duchenne. Scott Griffin says shielding Gabe from the impact of the disease is one thing, but he speaks candidly to reporters so that 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.”

And he’s hoping that his “fight” for this legislation will be won, easily. He says he’s seen a lot of bipartisan support in Alabama and across the nation in states where similar legislation has won approval. “It’s evident that the people of the states believe that we should have a right at the state level to make this decision and that the federal government should not be – should not stand between (in my case) – should not stand between my son and a potentially lifesaving drug.” He says there are several drugs in clinical trials that might be options for Gabe,

The committee hearing on Senate Bill 357 is scheduled for 1 p.m. in Room 325 at the Alabama Statehouse.

You may read the full bill, here, and you may connect with the Griffin family through their Hope for Gabe Facebook page.

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