Family outraged over life-changing treatment going from free to $375,000 a year

Feb 7, 2019

NBC News
Ben Kesslen
February 7, 2019

“I don’t think I would be alive today” without the very-expensive drug, Will Schuller told NBC News.

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 his mile time kept increasing.

“I was getting much slower and slower times,” Will, who is a now a senior at the University of Tulsa studying mechanical engineering, told NBC News on Thursday. Eventually, he said, it got the point that within weeks he “couldn’t run even half the distance.”

From there, it only got worse. Will struggled to walk from the school parking lot to his classes, and he couldn’t exercise.

“Everyone knew I was this fit guy, and in just a matter of a month you see me struggling to walk from one side of the hallway to the other,” he said. “My sister would have to piggyback me up the stairs.” At that point, Will’s parents had to pull him out of school.

It took about six weeks for a neurologist to figure out what was going on. Right around Christmas 2014, Will was diagnosed with Lambert-Eaton Myasthenic Syndrome (LEMS), a rare neuromuscular disorder…

…When Schuller got the drug, called 3,4-diaminopyridine, or 3,4-DAP, he instantly felt better…

“He skips out to the lobby. And we skip on down to the next appointment. And I’m with the wheelchair trying to follow him back down,” she said. “I don’t believe in miracles. But that was pretty darn close to one. … It was a miracle drug, for sure.”

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…

…“This is not a story about innovation. This is a story about exploitation,” Burns said.

Will’s parents said doctors at the Mayo Clinic warned them about an impending price increase, but they never imagined it would start costing hundreds of thousands of dollars.