By Brandon Moseley
Alabama Political Reporter
On Thursday, May 28, the House passed the Right to Try Act, which was sponsored by Senator Cam Ward (R-Alabaster), and carried by Representative April Weaver (R-Shelby County) in the House. The law, SB537, gives terminally ill patients access to medicines that have passed Phase 1 of the FDA approval process, but are not yet on pharmacy shelves. The law has passed both the State House and Senate with bipartisan, unanimous support.
Governor Robert Bentley is expected to sign the bill, once it reaches his desk.
SB537 allows doctors to prescribe medicines that are being used in clinical trials, but have not yet been ruled on by the US Food and Drug Administration, to their terminally ill patients.
Ten-year-old Gabe Griffin has been the face of the Right To Try effort in Alabama. Gabe has a rare form of muscular dystrophy called Duchenne. Duchenne typically leaves its young victims wheelchair-bound by age 12 and shortens their life expectancy to just 20 years. It is hoped that drugs in development today could help keep Gabe out of a wheelchair and add years to his very limited life expectancy.
Sen. Cam Ward said in a statement on Facebook, “Proud to see Gabe’s Bill get passed by the House today. The bill sponsored by me and Rep Weaver now goes to the Governor for signature. This law will help young people with terminal illnesses have access to medication that they need.”
Gabe’s father, Scott Griffin said in a statement:
“So this was a very emotional day and I want to send thanks to Senator Cam Ward and Rep April Weaver for their fight and their support for a boy they met just a few months ago! As a parent you have no idea what cards you are going to be dealt. But I can tell you that with every breath we have we are going to fight for Gabe. I realized this morning what Gabe thought the passing of this Right to Try bill meant to him…he thought he would get the drug once the bill becomes a law. And in his words would be able to run like his friends, climb stairs without having to be carried, and ride a bike. Though these things are not going to happen ‘tomorrow’ the process has started with the passing of this legislation! I hope with every Christmas, birthday, etc. that I can give these things to Gabe and I know this is bigger than me! I am amazed at the people that stepped up to help with this process. Today I was surrounded by friends and family…some old friends, some new friends. What was amazing to me were the tears that flowed from those that Gabe has met through this process when this legislation passed the House. Those that can relate to the suffering of a little boy that will increase over time without the legislative process both state and federal. This process will have to be amended at the federal level in my opinion which is a fight we are ready to start. We can not do this alone and will need plenty of support from the Alabama delegation, our Federal representatives, and our firends. As I looked at Gabe today when the vote was unanimous I could not help but get emotional. Unanimous in both the Senate earlier and the House today! A message has been sent that the FDA should not stand between terminally ill patients and drugs or personalized medicine that could potentially save them! I pray every day that I can give Gabe what he wants…the ability to be a normal little boy…to run, to climb, to pedal. Today was the first step, today was a great day, and there are way to many to thank here! You know who you are …Gabe is making a difference and because of Gabe, many others will have HOPE!”
According to information provided by the Goldwater Institute, Right To Try laws are already in place in Arizona, Arkansas, Colorado, Indiana, Louisiana, Michigan, Minnesota, Mississippi, Missouri, Montana, Nevada, North Dakota, Oklahoma, South Dakota, Tennessee, Utah, Virginia, and Wyoming. Lawmakers in Florida, Illinois, and Texas have sent similar bills to their governor for approval. 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.
The President of the Goldwater Institute Darcy Olsen said in a statement:
“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 already has a process that allows people to ask permission to access investigational medicines, but fewer than 1,000 people a year receive help. Many die during the application process. There is an effort to simplify the process.
Olsen said, “A simpler form is window dressing on an archaic and inhumane system that prevents the vast majority of Americans with terminal illnesses from accessing promising investigational treatments. Patients must still beg the federal government for permission to try to save their own lives—it’s just a shorter form.”
Olsen is urging the Governor to sign the bill into law, “Governor Bentley has the opportunity to help thousands of Alabamans who need access to treatments today. The sooner he signs, the sooner they can start working with their doctors on accessing new medications.”