WASHINGTON, Feb. 4 - 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.”
“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,” Sanders wrote.
Sanders requested information on what Catalyst is charging patients, private insurers and government payers for the medication.
“The egregious price set by Catalyst cannot be allowed to stand. Patients in America should not be allowed to suffer or die because of the greed of a drug company. If Catalyst does not substantially lower the price of this medication, Congress must act to ensure it is affordable for every patient,” Sanders said.
Read Sanders' letter to Catalyst here.