Drug for debilitating disease skyrockets to $375K

The price for a drug that treats Lambert-Eaton Myasthenic Syndrome (LEMS), a rare neuromuscular disorder that impacts strength and impairs walking, went from cost-free to the price of a house—$375,000 to be exact. 

The drug, 3,4-diaminopyridine (3,4-DAP), was first made by New Jersey-based Jacobus Pharmaceuticals and was available through the FDA’s “compassionate use” program. More recently, Florida-based Catalyst Pharmaceuticals received the exclusive rights to make the drug, added a preservative, and rebranded it as Firdapse, according to a report from NBC News.

Sen. Bernie Sanders (I-VT), a highly vocal proponent of fair drug prices, wrote a letter to Catalyst asking to know the reasoning behind such the sky-high price hike.

"Catalyst's decision to set the annual list price at $375,000 is not only a blatant fleecing of American taxpayers but is also an immoral exploitation of patients who need this medication,” Sanders wrote.

One of President Trump’s chief administrative priorities is to curb the increase in drug pricing. HHS Secretary Alex Azar has also demanded the pharmaceutical industry to bring down prices.

“This is not a story about innovation,” Ted M. Burns, MD, professor of neurology at the University of Virginia, told NBC News. “This is a story about exploitation.”

Just ask Will Schuller, an 18-year-old college student who was left unable to walk because of the debilitating disease. While his payments for the drug are “dramatically less” than $375,000, Schuller’s father said the price will cause everyone’s premiums to go up and eventually cost the entire healthcare system.

Catalyst argues the price for Firdapse is legal, reasonable and that most patients will pay approximately $10 out of pocket as a co-pay.

"Why is my insurance company having to pay that much money for something that doesn't cost that much to make? Is that really the kind of system we want to have?” Ann Schuller, Will’s mother, asked NBC News.

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