Dying Patients Fight the FDA
Everett Davis had been living with a rare, deadly blood disease for more than a decade. By 2005 he needed a new liver to survive, but doctors would not do the transplant unless they could figure out how to keep the disease from destroying the new organ. His one chance: an experimental drug called Soliris from Alexion Pharmaceuticals Inc.. Yet he didn't qualify for the clinical trial. His doctors, friends, and family members all searched for a way to get him the drug, finally calling his senator, Arlen Specter (R-Pa.), who intervened. "I was informed on Thanksgiving of 2006 that I would get the drug," says Davis, 32. "It's the best news I ever got."
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