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Bentley signs Gabe Griffin Right To Try Act for terminally ill patients into law

June 11, 2015

Originally written byMartin J. Reed for AL.com

“I’m telling you every step along this journey has been emotional. This was just even more emotional than passing the House” with a 97-0 vote last week, Griffin said in a phone interview this afternoon. “To walk in there and to see it become law is just so remarkable.”

The Senate Bill 357 legislation called the Gabe Griffin Right To Try Act is named after the redheaded child with a big smile who is one of about 15,000 in the U.S. with a rare genetic disorder called Duchenne muscular dystrophy that causes a constant deterioration of muscles and usually leads to an early death.

Gabe’s family along with a host of supporters including bill sponsors Sen. Cam Ward of Alabaster and Rep. April Weaver of Brierfield gathered in Bentley’s office for today’s signing by the governor.

“Gabe Griffin is a special child who has worked hard to advocate for this legislation,” Bentley said in a statement. “As a physician, I believe it is extremely important to give terminally ill patients the option to consider experimental treatments. Gabe’s story has touched many lives. I appreciate the Alabama Legislature passing this bill and giving Gabe and other children like him hope for the future.”

The legislation provides terminally ill patients with access to drugs and treatments that have successfully completed phase 1 of a clinical trial but have not yet been approved for general use by the U.S. Food and Drug Administration.

The governor’s office noted that eligible patients for the Right To Try Act must meet criteria including having a terminal illness, attested to by the patient’s treating physician. They must consider all other treatment options currently approved by the Food and Drug Administration.

Patients also must receive a recommendation from their physician for an investigational drug, biological product or device, and give written, informed consent for the use of the treatment.

Bentley met Gabe and his supporters last summer when they stopped in Montgomery at the Capitol as part of a cross-country cycling journey totaling more than 3,000 miles to raise awareness of the child’s condition and Duchenne muscular dystrophy.

Michael Staley, who was at the time chief of staff for then-U.S. Rep. Spencer Bachus, and another individual rode their bicycles more than 3,000 miles from Oregon to Mobile for the Ride4Gabe campaign.

Scott Griffin said he plans on continuing the fight for terminally ill patients at the congressional level.

“The next step is to breathe and then we’re going to regroup and we’re going to see what our options are at this time and place with all the medical innovations going on. But more importantly, the next step is going to be to go to the federal level and pursuing similar type of legislation in D.C. because I believe it is time for processes and procedures for terminally ill patients to be re-looked at and to be reconsidered,” he said.

“I think the process needs to be way more streamlined from a time perspective because time is not our friend. That’s really what we’re battling is time here,” he added.

In the statement provided by Bentley’s office, Ward commended the Legislature for passing the bill.

“When you have a child sick with a life-threatening illness, you want that family to have every medical opportunity available for their son or daughter. Now, families and individuals in Alabama will have access to medical drugs that may aid their recovery, even as the drugs are going through the formal approval process,” Ward said.

Weaver called Gabe Griffin “a special young man and an inspiration to so many, and I’m hopeful this law will bring him and his family one step closer to a cure.”

 

 

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