President of the Birmingham, Alabama-based Hope for Gabe Foundation Scott Griffin was thrilled when the Alabama Legislature formed a Rare Disease Advisory Council last week.
Still, he wants to take the message of the importance of access to drugs and treatment for rare diseases beyond Alabama’s borders.
So the Hope of Gabe Foundation is doing just that.
The group is hitting the road, traveling across the country to educate the public and policymakers about access to drugs through its third cross-country bicycle race.
“The Alabama Legislature passed a Rare Disease Advisory Council in Alabama this past week,” said Griffin. “The Hope for Gabe Foundation will take Alabama’s story of collaborative success from coast to coast.”
For the next six months, the non-profit will endeavor to raise awareness about about Duchenne Muscular Dystrophy and educate the public about legislation that can help save lives through a cross-country bicycle ride, called Ride4Gabe.
Griffin’s son, Gabe, is eleven and suffers from the terminal disease Duchenne and desperately hopes for a cure for his son someday soon.
Dr. Brian Toone, a Samford professor who lives in Hoover, Ala. is an internationally known competitive cyclist who will participate in the annual endurance cycling race called Race Across America, or R.A.A.M. Toone has become close with the Griffins over several years and participated in the foundation’s annual Ride4Gabe efforts. This year’s bicycle race will take the team from Oceanside, CA to Annapolis, MD and cover approximately 3,080 miles.
Toone’s effort will be promoted as RAAM and will use the slogan “Racing for Accelerated Access to Medicine.” Access is currently a major issue in the Duchenne community and Griffin believes policymakers can learn from the story and apply those lessons to future legislation at the state and federal level.
“In the last year we’ve seen the first-ever drug approved that targets the underlying cause of Duchenne,” said Toone. “It is infuriating that insurance companies are refusing to cover it even though it is safe and the leading American doctors who treat Duchenne say it should be approved. On the other hand, we think it is ridiculous the FDA is allowing another company to charge $90,000 to our insurance companies for a different drug that was recently approved by the FDA since we have been getting that same drug from Europe for Gabe at a cost of $500 a year since 2010.”
Toone says that while winning the Race Across America is obviously on his mind, he is most inspired by his ability to demonstrate rigors and fatigue that kids with Duchenne and other rare diseases feel each and every day.
“I’ll be cycling around the clock for about ten days as I cross the country from coast to coast,” said Toone. “When I am too tired to get myself on or off my bicycle I will thank God for my good health and look to rare disease patients like Gabe, who cannot pedal for themselves, to inspire me along the way.”