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Terminally Ill Boy Fights For Drug

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The Associated Press

Published: August 21, 2008

NEWARK, N.J. - A federal judge on Wednesday ordered a research company to supply an experimental drug to a 16-year-old Minnesota boy who is terminally ill with a rare form of muscular dystrophy.

The decision offers no immediate relief to Jacob Gunvalson. Because of federal regulations, the teen cannot begin taking the drug immediately.
PTC Therapeutics plans to appeal the ruling by U.S. District Judge William J. Martini, who also denied the company's request to put his decision on hold while it was appealed.

Gunvalson's family contends that PTC, of South Plainfield, led them to believe he could participate in a clinical trial of the drug, which is being investigated as a possible treatment. But they say the company then went back on its word.

The company maintains that no promises were made. It said that allowing the teen to join the clinical trial would not be safe and would set a bad precedent that could hinder research.

Martini ruled from the bench Wednesday while Gunvalson sat in a wheelchair next to one of his attorneys.

"It's clear to me that if the plaintiff, Jacob, was denied this relief, he would suffer irreparable harm," Martini said. "His condition has already deteriorated significantly in the past year."

Jacob suffers from Duchenne muscular dystrophy.

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