FDA: Please, approve the medicine my boys need to survive, both of my sons deserve to live

Posted by: Christine McSherry on November 20, 2012

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Food and Drug Administration (Director)


Max and Austin are brothers, and both have a lethal genetic disease called Duchenne Muscular Dystrophy (DMD). Right now, only one of them has access to Eteplirsen, a new "miracle drug, that has changed Max's life. As one brother thrives, the other gets tragically worse while he waits for access to the medication that could save him.

Every day, children with DMD get weaker, it causes loss of muscle, to the point where children with the disease cannot breathe on their own. It is a slow death sentence.

The FDA must put Eteplirsen through the accelerated approval process and make this important drug available to all children with DMD.

For the last 60 weeks, Max has been taking this new medication as part of a medical trial. This year, Max, who was once dependent on a wheelchair most of the day, marched in a Halloween parade.

But as Max gets better, his older brother, Austin, 13, gets worse. He suffers, silently, as his disease progresses. Austin was unable to take part in the drug trial that helped his brother so much.

Although Austin doesn't walk, he still has strength in his upper body, which this drug could help him keep. It could save him from spinal surgery, a tracheostomy, a feeding tube. It could allow him to drink and eat. It could keep him sitting up. It could allow him to hug his family.

Eteplirsen is the first hope many children with Duchenne have. It has the ability to stop this disease in its tracks...and the boys who need this drug simply don't have one more day to waste, waiting for it.

A law was just passed, allowing the FDA to move drugs like these, for fatal illnesses, like Duchenne, through an accelerated approval process.

Thousands of boys in the United States are suffering with DMD. If the FDA allows American boys access to this drug, it will save thousands of lives -- and could help many more across the globe get the care they need.

The FDA should use accelerated approval to make this important drug available to all children with Duchenne Muscular Dystrophy.

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