Senator Sanders will ask why the drug, once freed, now costs $ 375k


WASHINGTON (Reuters) – US Senator Bernie Sanders plans to send a letter to Catalyst Pharmaceuticals on Monday asking her to justify her decision to charge $ 375,000 a year for a drug that has been available for free for patients for years.

US Senator Bernie Sanders speaks at a press conference on the resolution of Yemen at Capitol Hill in Washington, United States, January 30, 2019. REUTERS / Yuri Gripas.

The drug, Firdapse, is used to treat the Lambert-Eaton myasthenic syndrome (LEMS), a rare neuromuscular disease, according to the letter, made available to Reuters by the senator's office. The disorder affects about one in 100,000 people in the United States.

The government is stepping up control over the pharmaceutical industry and increasing prescription drug prices, one of the main concerns of voters and a priority of the administration of President Donald Trump.

Both the House of Representatives of the United States, led by the Democrats, and the Senate, controlled by the Republicans, have begun this year to hold hearings on the rising costs of drugs. Sanders is an independent who usually votes with the Democrats.

In the February 4 letter, Sanders asked Catalyst to explain the financial and non-financial factors that led the company to fix the list price to $ 375,000 and say how many patients would suffer or die because of the price and how much was paying to buy or produce the drug.

For years, patients were able to get Firdapse for free from Jacobus Pharmaceuticals, a small New Jersey-based pharmaceutical company, which offered it through a US Food and Drug Administration (FDA) program called "compassionate use".

The program allows patients with rare diseases and conditions to access experimental drugs outside of a clinical trial when there is no viable alternative.

Catalyst, based in Florida, received FDA approval from Firdapse in November, along with exclusive rights to market the drug for several years. The company, which acquired the rights to the drug from a company called BioMarin in 2012, develops and markets drugs for rare diseases.

In December, Catalyst announced it would rate Firdapse for $ 375,000 a year.

"Catalyst's decision to fix the annual list price at $ 375,000 is not just a blatant disregard for American tax payers, but it's also an immoral exploitation of patients who need this drug," Sanders wrote in his letter.

Sanders joins other US lawmakers in studying the pricing practices of pharmaceutical companies this year.

Democratic representative Elijah Cummings, chairman of the House Supervision Commission, wrote to 12 pharmaceutical companies in January asking for detailed information on how they set drug prices.

Democratic representatives Frank Pallone and Diana DeGette wrote to the leaders of Eli Lilly and Co, Novo Nordisk and Sanofi SA, the leading insulin producers for a long time, asking for information on why the price of drugs has skyrocketed in recent years .

Reporting of Yasmeen Abutaleb; Editing by Sonya Hepinstall

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