Sanders asks why once-free drug now costs $375,000 a year

Sanders asks why once-free drug now costs $375,000 a year
© Greg Nash

Sen. Bernie SandersBernie SandersChamber of Commerce argues against Democratic proposals for financial transaction taxes Top Sanders adviser: 'He is a little bit angry' Working Families Party endorses Warren after backing Sanders in 2016 MORE (I-Vt.) on Monday asked a pharmaceutical company why a drug that was once free for patients now costs as much as $375,000 annually.

Catalyst Pharmaceuticals informed investors in December about the new pricing for Firdapse, which is used to treat the rare neuromuscular disorder Lambert-Eaton Myasthenic Syndrome (LEMS), Sanders wrote in a letter to the company.

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“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 in the letter.

Patients suffering from the rare disorder previously were able to obtain the drug for free from a small pharmaceutical company that offered it through a Food and Drug Administration (FDA) program called “compassionate use.”

The program gave patients with rare conditions and diseases access to experimental drugs that had not gone through clinical trials if there was no other option for treatment.

In November, the FDA allowed Catalyst to distribute the drug, with exclusive rights to market it. The following month the company said it would sell Firdapse for $375,000 a year, drawing the ire of Sanders and other lawmakers who are attempting to clamp down on rising drug prices.

Sanders is asking Catalyst to explain both the financial and nonfinancial factors that made it decide to set the new list price. He also asked how many patients would suffer and die due to the price increase.

"Catalyst’s top priority is improving patient care in the LEMS community and potentially elsewhere within the neuromuscular community," the company said in a statement Monday. "We will respond to Senator Sanders’ letter in a timely manner and provide information about Firdapse and the programs that we have in place to raise awareness of LEMS, facilitate accurate and timely diagnosis, and broaden affordable patient access to an FDA-approved treatment."

Updated at 3:57 p.m.