One family’s winding journey to secure medicine they hope could save their son’s life is several steps closer to the finish line.
A group of Alabama lawmakers voted Wednesday in favor of House Bill 463, also known as the Right to Try Act. The bill says that doctors caring for people with terminal illnesses can prescribe medications that the Food and Drug Administration has deemed promising, but not yet ready for mass consumption.
The Griffin family and their son, Gabe, are at the center of the legislation. Scott Griffin and his wife Traci live in Birmingham with their four children: Turner, age 14; Cooper, age 11; and 9-year-old twins, Gabe and Addie.
In an interview with Alabama Today, Griffin said he and his wife had suspected since the twins were babies that Gabe wasn’t developing as quickly as his sister.
“When you have a twin right beside him and she’s hitting all her benchmarks, and he’s not, it becomes a little evident that something’s not right,” Griffin said. “Our doctors kept saying, ‘Nothing’s wrong. He’s just a boy twin and they’re slower to develop.’ So we just kind of dismissed it. But something didn’t seem right.”
The Griffin’s neighbor was the first to suggest that Gabe might need to be tested for muscular dystrophy. An occupational therapist, she sometimes babysat the kids and noticed subtle differences in Gabe’s attempts to stand and walk. She told the Griffins about Duchenne Muscular Dystrophy and recommended that 3-year-old Gabe see a doctor.
Duchenne is one of nine types of Muscular Dystrophy. It causes generalized weakness and muscle wasting that increases over time and with muscle activity. The disease primarily effects boys and shows up between ages 3 and 5.
According to the Muscular Dystrophy Association, boys with Duchenne typically did not survive beyond their teens. But advances in medical treatments and care have increased their life expectancy: “Survival into the early 30s is becoming more common and there are cases of men living into their 40s and 50s.”
Scott Griffin says those medical advances could save Gabe’s life. “He’s 9 now. The typical progression of the disease is that by 10 or 12, they’re wheelchair bound. And then, between 17-20, they usually die.”
He says that’s why the family started looking into cutting-edge therapies to slow – or even reverse – the degeneration of Gabe’s muscles. However, the drugs that the Griffins and their doctors feel would help Gabe are still going through the FDA approval process.
“We believe those drugs could save him, but we can’t get them because they’re not FDA approved,” said Griffin. “And after years of petitioning the FDA, we decided to take our fight to the state level.”
The Griffins started a foundation called Hope for Gabe (H4G) to raise awareness about Duchenne. They also enlisted the help of Michael Staley, former chief of staff to U.S. Congressman Spencer Bachus and current lobbyist at Birmingham law firm Waller Landsen Dortch and Davis, to educate legislators about the proposed law.
Two lawmakers, Sen. Cam Ward and health committee chair Rep. April Weaver, agreed to sponsor legislation that would allow doctors to prescribe medication in the earliest stages of FDA approval to terminally ill patients. Sen. Ward’s bill has already passed the Senate.
Today, Rep. Weaver’s legislation received a favorable report from the health committee and can move to the House floor for open debate.
“Right to Try is the right thing to do,” Weaver said just after the committee vote. “I’m a mother and a nurse with more than 20 years in health care. I believe that anything that we can do to help doctors and terminal patients work together on their plan of care and remove barriers to treatment that might be beneficial is just the right thing to do.”
Griffin said that the timing of the legislation is critical to securing medical treatment for Gabe. “Getting him these drugs now means that we can stop the disease before he needs a wheelchair or breathing tubes. They could even turn his condition around.”
For Gabe, passing the Right to Try Act means being able to “ride a bike, run, and climb stairs like everybody else.” He said that he’s also looking forward to excelling in his favorite subject in school: physical education.
Weaver said she hopes to see the bill head to the House floor by late next week.