This Life-Saving Drug Just Went From $0 to $375,000

Published on Feb 4, 2019
For two decades, LEMS patients have received a drug for free from Jacobus Pharmaceutical under the Food and Drug Administration’s compassionate use program. Recently, Catalyst Parmaceuticals bought the drug and announced to investors it would set the list price at $375,000 per year. Rebecca, one of the many patients who does not know how she will afford it, talked to Sen. Bernie Sanders about what's going on.

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In a letter sent Monday to the CEO of Catalyst Pharmaceuticals, Sen. Bernie Sanders (I-Vt.) demanded the company explain its decision to set the price of Firdapse, a drug used to treat a rare neuromuscular disease called Lambert-Eaton myasthenic syndrome (LEMS), at $375,000 per year.

For two decades, patients have received the same drug – known as 3,4-DAP – for free from Jacobus Pharmaceutical under the Food and Drug Administration’s compassionate use program. Recently, Catalyst licensed the rights to the drug and received exclusive rights to market Firdapse for seven years under the FDA’s orphan drug designation. In December 2018, Catalyst announced to investors it would set the list price for Firdapse at $375,000 per year.

As a result, patients around the country are frightened as to whether or not they will be able to maintain access to a drug they depend upon to survive.

Last week, Sanders spoke via Skype with one of those patients, Rebecca Hovde of Wellman, Iowa, who told him about the incredible anxiety people with LEMS are living with as a result of Catalyst’s decision to increase the price. “I have friends saying that it’s too much. They know they can’t afford it. And they’re just going to go to bed when their 3,4 DAP runs out,” Hovde told Sanders. (Watch the full conversation here.)

In response to the concerns raised by Hovde and other patients, Sanders asked the CEO of Catalyst how many patients will suffer or die due to their decision to set such an outrageous price, calling that decision “not only a blatant fleecing of American taxpayers, but...also an immoral exploitation of patients who need this medication.”