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A life-altering drug that was once free now costs more than a house

prescription drug costs are too highImagine making all the right decisions to ensure you stay in good health, and one day you find out you need to take a drug for the rest of your life. Then imagine that one year of this drug costs more than the price of a house.

Active and overall healthy, 18-year-old runner Will Shuller of Overland Park, Kan., noticed his mile time increasing. After only a few months, Will struggled walking from the parking lot to his classes at the University of Tulsa.

NBC News reported that after six weeks, neurologists found that Will had a rare neuromuscular disorder called Lambert Eaton Myasthenic Syndrome (LEMS) – a chronic autoimmune disorder that affects the body’s strength and causes muscle fatigue. Nearly 3,000 people suffer from this disorder in the U.S.

The drug, 3,4-diaminopyridine or 3,4-DAP, allows people like Will to instantly feel better. Will, and others were able to access the medication for free through the FDA’s “compassionate use” program – until now.

Since 1992, 3,4-DAP was made by Jacobus Pharmaceuticals. A different company, Catalyst, recently received the exclusive rights to the drug, renamed it Firdapse, and now charges more than $375,000 a year.

“This is not a story about innovation. This is a story about exploitation,” said Dr. Ted M. Burns, a professor of neurology at the University of Virginia.

Patrick J. McEnany, Catalyst CEO, told investors in December that the pricing structure “reflects our focus on ensuring broad and sustainable coverage from both private and public payers and assistance for patients in need.”

And while it’s true that patients with insurance may only have a copay for the drug, Will’s mother Ann Schuller wants to know why her insurance company has to pay that much money for something that doesn’t cost much to make.

Have your drug prices increased dramatically? Do you know why? How has it affected your access to life-saving or life-altering treatment? Share your story with Voices for Affordable Health.