BIRMINGHAM, Ala., June 13, 2017 /PRNewswire/ -- In 2008, Scott Griffin's 12-year-old son Gabe was diagnosed with Duchenne muscular dystrophy. Gabe's lifelong mission is to access medicine to stop the rare disease that makes it increasingly difficult for his muscles to support his body.
Gabe has taken a daily dose of deflazacort—a common glucocorticoid prescribed around the world for conditions like asthma, juvenile chronic arthritis, and ulcerative colitis—for seven years.
A one-year supply from a foreign pharmacy previously cost Gabe's family $418 per year. The FDA approved deflazacort to be marketed as 'Emflaza' and now it costs $35,000 for a 55-pound child. Gabe weighs seventy-seven pounds and the manufacturer is charging his insurance company over $50,000.
Griffin wants to protect laws intended to incentivize rare disease drug development while closing loopholes that are being abused.
"We want policies at all levels that accelerate access to safe and effective treatments without delay. We see this outrageously priced drug as a barrier between Gabe and a potentially life-saving treatment," said Griffin.
FDA Commissioner Scott Gottlieb testified to Congress that his agency is looking for ways to bring more drugs to the market to increase competition.
"There are 169 companies making this drug around the world," says Griffin. "Taxpayers get the bill when Medicaid is getting charged 11,000-12,000% above the global market price."
Race Across America
Birmingham resident Brian Toone will compete in the toughest bicycle race in the world starting June 13th in Oceanside, California. The annual Race Across America concludes in Annapolis, Maryland. Gabe and his twin sister Addie will follow Toone and cheer him on in the Hope for Gabe Foundation motorhome.
Toone will experience extreme fatigue while pedaling around the clock to finish the 3,070-mile race. Online supporters will witness Brian and Gabe's perseverance and determination to overcome all odds.
"I am really excited for the race and to carry our message across the country. Something needs to be done to make sure that boys like Gabe have access to life-saving and life-changing medicine," said Toone.
Previous Ride4Gabe campaigns have crossed 21 states and 5,542 miles.
Ride4Gabe's campaign goal for 2017 is to raise $12.00 per mile.
Follow the journey and help them reach their goal go at www.ride4gabe.com or on social media @Ride4Gabe or #Ride4Gabe.
SOURCE Hope for Gabe Foundation