Fighting for drug
Newfields family fights for approval of 'miracle drug' for ailing boy
Lucas Currier, 11, who attends the Cooperative Middle School in Stratham, was diagnosed with Duchenne Muscular Dystrophy (DMD) at the age of 4, according to his mother, Linda.
While Lucas still can walk, Currier said he started using a wheelchair last year. Despite this, Lucas still loves playing all kinds of sports, she said.
Currier said Lucas, who has been obsessed with sports from a young age, is extremely competitive and plays baseball, hockey and power soccer. She said he has been enjoying watching the Winter Olympics.
Under the accelerated timeline, the FDA could approve eteplirsen for use by the end of the year as opposed to the normal schedule, which could delay access until 2018.
Currier said the FDA was concerned about recent issues with another dystrophin-producing drug called drisapersen, which is being developed by Glaxo Smith Kline. She said drisapersen has not shown the same results as eteplirsen, which uses a different process and has exhibited no side effects during a 120-week trial.
"We at the FDA recognize how devastating this disease is to patients and their families, as evidenced by the hundreds of letters submitted to the agency," Walsh said in an e-mail.
"However, please know that we will work diligently to review any request made to expedite its review," Walsh said in an e-mail.
"In the time they're taking to consider this, kids are dying," Currier said. "Lucas can't wait four years."Currier said some people with DMD have lived until 32, but the average lifespan ends around 20.
"What this drug does is help create dystrophin – it's a miracle," Currier said.
Currier said while he was attending summer camp, Lucas met one of the dozen boys who was taking eteplirsen as part of a clinical trial. She said his roommate didn't require a wheelchair and the drug seemed to stabilize or improve muscle function.
"This could be the first generation of kids with DMD who could live," Currier said.
For more information, go to firstgiving.com/saveourboys or fda.gov.
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