Vermont family begs FDA for healing drugs

SAXTONS RIVER, Vt.

Jenn and Craig McNary and their family of six are in a tough spot. Their two oldest sons have Duchenne Muscular Dystrophy, a rare form of muscular dystrophy that only affects boys. However, only one son, Max, 10, was chosen to be in an experimental drug trial that seems to be reversing his symptoms.

About 16 weeks into treatment, Max started showing signs that he was building strength. While his condition was improving on the drug eteplirsen, however, his older brother Austin, 13, was watching from his wheel-chair.

"Around week 36, we started telling people, 'Hey, this drug is working. Now we need it for Austin and all the other boys, what's the fastest route for this?'" said Jenn McNary.

As the parents soon found out, there really is no fast route.

The family has drafted a petition to the Food and Drug Administration, hoping that the agency would speed up the drug's approval process through a new orphan drug bill, passed by Congress this summer.

"The FDA has its red tape," said Craig McNary, "and the law says they'll do things faster, but how fast is fast?"

For over seven months, the family has been trying to meet with the agency. In a statement, the FDA says they have contacted the family. However, the McNarys say that no action has been taken to meet with or talk about expediting the drug's public release.

Until then, the family will keep fighting for their boys.

"Jenn and I, we draw our strength from them. If they keep going, we keep going," said Craig.

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Vermont family begs FDA for healing drugs