The ruling by the U.S. Court of Appeals for the Third Circuit in Philadelphia was a blow to 17-year-old Jacob Gunvalson, who suffers from Duchenne muscular dystrophy.
The court ruled that U.S. District Judge William J. Martini in Newark erred in his August ruling that PTC Therapeutics of South Plainfield, N.J., must provide the drug to Gunvalson. That decision had been stayed pending the company's appeal.
"I just think it's really unfair that these drug companies get all these benefits from the federal government," said Jacob's mother, Cheri Gunvalson. "And then they're allowing boys to fall through the cracks and die." She said she would not give up her fight but didn't know what the next step would be.
In its ruling, the appeals court said it was "sympathetic to the plight of Jacob and his family," but that the lower court "abused its discretion" in ordering PTC to supply the drug to Gunvalson.
The Gunvalsons, who live in Gonvick, Minn., maintained that the company led them to believe that Jacob could participate in a clinical trial of the drug, which is being investigated as a possible treatment — and that the company then went back on its word.