When Will Schuller was an 18-year-old senior in high school in Overland Park, Kansas, something puzzling was happening. He was big into running at the time" and seemingly in good health, but ...Will struggled to walk from the school parking lot to his classes, and he couldn't exercise. Around Christmas 2014, Will was diagnosed with Lambert-Eaton Myasthenic Syndrome (LEMS), a rare neuromuscular disorder. LEMS is "a chronic autoimmune disorder that affects strength and muscle fatigue ability," said Dr. Ted M. Burns, a professor of neurology. There is a drug to treat LEMS that up until recently was free for patients through an FDA program called "compassionate use." When Schuller got the drug, called ... 3,4-DAP, he instantly felt better. Since 1992, 3,4-DAP, was made by Jacobus Pharmaceuticals, a small New Jersey company, until a different company, Catalyst, recently received the exclusive rights to the drug. Catalyst added a preservative, renamed it Firdapse, and is now charging north of $375,000 a year for the life-changing drug. Will's parents said doctors ... warned them about an impending price increase, but they never imagined it would start costing hundreds of thousands of dollars. "We're paying ... less than that," said Bob Schuller, Will's dad. "But everyone's premiums are going to go up as a result of this. So it's a cost to the entire system." Sen. Bernie Sanders, I-Vt., sent a letter to Catalyst on Monday demanding an explanation for the new price of Firdapse, calling it "a blatant fleecing of American taxpayers."
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