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Catalyst Pharmaceuticals recently acquired the North American license for a life-saving drug that treats a rare medical condition, meaning the free version is no longer available.

Now, Catalyst is charging patients who depend on the drug $375,000/year. And Senator Bernie Sanders (I-Vermont) isn’t having it.

The drug — known as Firdapse — is used to treat a rare autoimmune disease called Lambert-Eaton myasthenic syndrome (LEMS). The American Association of Neuromuscular & Electrodiagnostic Medicine says LEMS is often associated with cancer, and lung cancer in particular. 40 percent of LEMS patients in the U.S. have some form of cancer.

In his letter to the CEO of Catalyst, Sen. Sanders characterized the acquisition of the license and the subsequent price hike as “an immoral exploitation of patients who need this medication” and “corporate greed.”

“I am profoundly concerned that Catalyst’s actions will cause patients to suffer or die,” Sanders wrote. “By setting such a high price and forcing production and distribution of the older, inexpensive version to cease, you are threatening access that patients had to a cheap version of this product, and handing a completely unwarranted bill to American taxpayers.”

As Sanders pointed out, Catalyst did not invent 3,4-diaminopyridine (3,4-DAP), the active ingredient in Firdapse, which has been used to treat LEMS patients for decades after its initial discovery in Scotland in the 1970s. In fact, an unapproved, free version of 3,4-DAP was previously offered through one of the Food & Drug Administration’s compassionate use programs before Catalyst acquired the exclusive license to produce it.

In an email to CBS, a Catalyst spokesperson said the company’s top priority was “improving patient care in the LEMS community.”

“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,” the company stated.

Pharmaceutical companies aren’t just guilty of licensing 3,4-DAP and overcharging American patients for the drug. California-based drug maker Biomarin acquired the European license for Firdapse in 2010 and charged so much that hospitals opted to use a free unapproved version of it for LEMS patients, due to the high cost from Biomarin.

 

Carl Gibson is a politics contributor for Grit Post. His work has previously been published in The Guardian, The Washington Post, The Houston Chronicle, Al-Jazeera America, and NPR, among others. Follow him on Twitter @crgibs or send him an email at carl at gritpost dot com.

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