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This Once-Free Drug for a Rare Condition Now Costs $375,000

Firdapse, a drug used for treatment of a rare neurological disorder that affects one in 100,000 people, used to be free. As of December, its annual cost became $375,000 and Vermont Sen. Bernie Sanders is asking why, Reuters reported.

Sanders sent a letter to Catalyst Pharmaceuticals asking the company to justify its action. “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,” wrote Sanders, an Independent who caucuses with Senate Democrats.

An equivalent of Firdapse was available free for 20 years from a small drug company, Jacobus Pharmaceutical, under an FDA program for access to experimental drugs, BioWorld reported. Jacobus had never gone through the entire FDA approval process to make the drug commercially available.

Catalyst obtained exclusive North American rights to Firdapse from its developer, Biomarin Pharmaceutical, in 2012. But Catalyst investors balked and sued when they learned of the free alternative. Catalyst settled the class action suit for $3.5 million in 2014 and then revealed in 2016 that it had to undertake additional testing for the FDA. Shares plunged and Catalyst laid off 30% of its workforce.

The Firdapse move is another in a chain of drug price increases even as pharmaceutical companies raise discounts to middlemen, dropping the net price. However, it isn’t clear whether patients see any of the price drops or if the middlemen keep the savings as profits.

Democrats and Republicans in Congress, as well as the White House, have publicly challenged drug companies over their prices.

The pharmaceutical industry in 2018 spent $280 million in lobbying and has been one of the biggest donors to political campaigns for years, according to the Center for Responsive Politics