The medication that kept Will Schuller running and playing soccer despite his rare nervous system and muscle disorder used to be free.
Now, it costs his family upwards of $375,000 before insurance for a single month's supply of the drug, they told NBC.
With a tiny tweak to its formula, the small pharmaceutical outfit, Catalyst became the exclusive owner of the drug formerly known as 3,4-DAP, gave it a fancy name (Firdapse) and an even fancier price.
Will's family was floored - and devastated - by the astronomical increase, as was Senator Bernie Sanders, who has written to Catalyst, pressing the drug maker to justify the price hike.
Will Schuller, a college senior, has been battling a rare, debilitating disease since 2014. The medication that allows him to walk and go to school has gone from free to $573,000 a month after a drug company made a slight tweak to the formula and hiked up the price
If Will can't afford his medication, he will be at best reliant on wheelchair, and may not even be able to hold his head up on his own
Will has always been the athletic type, excelling at soccer and a natural-born runner, everyone knew him as 'this fit guy,' he told NBC. But when he was an 18-year-old high school senior in Overland Park, Kansas, Will started to slow down - way down.
Within a few weeks, he couldn't finish his runs. By the time a month had gone by, Will's sister had to carry him up the stairs of the family home.
He was constantly, desperately fatigued that he couldn't go to school.
No one could figure out what was ailing the high school senior who had been so active.
After six weeks and countless visits to doctors, Will was diagnosed with Lambert-Eaton Myasthenic Syndrome (LEMS).
LEMS only affects about one in a million people, including some 3,000 in the US.
It is a rare autoimmune condition that causes the body to attack itself, damaging nerve endings and cutting of signals through the nervous system that tell muscles to contract.
LEMS is an autoimmune disease that causes degenerative weakness throughout the body
Now, Catalyst has added a preservative and gotten Firdapse approved. It sells prescriptions of effectively the same compound for $573,000 a month
Symptoms start in the legs, but can progress until people can't walk, raise their arms above their heads and struggle to sit up or keep their heads up. Eventually, it can make it impossible to swallow, speak or breath and is closely linked to cancer, especially of the lungs.