Sen. Bernie Sanders, I-Vt., is calling a company’s decision to price at $375,000 a year a drug that was previously offered free to those with a rare autoimmune disorder “an immoral exploitation of patients who need this medication.”
In a letter addressed to Catalyst Pharmaceuticals CEO Patrick J. McEneny dated Feb. 4, 2019, Sanders called the change, “a blatant fleecing of American taxpayers” adding “I am profoundly concerned that Catalyst’s actions will cause patients to suffer or die.”
In a statement posted on his Senate website, Sanders wrote that Catalyst announced the pricing to investors in December.
Shortly after noon, the company said there was no one immediately available to respond to Sanders’ letter.
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The drug in question is called Firdapse, which was approved by the U.S. Food and Drug Administration in November last year for the treatment of Lambert-Eaton myasthenic syndrome, or LEMS, in adults.
The FDA describes LEMS as “a rare autoimmune disorder that affects the connection between nerves and muscles and causes weakness and other symptoms in affected patients.”
Sanders writes that the active ingredient in Firdapse, 3,4-diaminopyridine, has been used to treat LEMS for nearly 30 years and that “the clinical effectiveness had been established over decades in Europe and the United States.”
Sanders said the cost of the drug ranges from $1,600 to $6,000 per year.
“Until now, patients have been able to access an unapproved version of this drug for free through a Food and Drug Administration compassionate use program,” Sanders wrote to Catalyst, adding, “Simply put, this is corporate greed.
Sanders is asking Catalyst for information behind the cost and pricing of Firdapse, as well as other questions such as, “How many patients will suffer or die due to Catalyst’s decision to set the annual list price of Fridapse at $375,000?”
The high cost of prescription medicine has been blamed as one of the drivers of rising U.S. health care costs. In January, the Trump administration announced a plan to eliminate some rebates paid by drugmakers in government programs such as Medicare to lower the prescription costs.
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Sanders, who was a candidate for the Democratic presidential nomination in 2016, is contemplating another run for president in 2020.
Aki Soga is insights and engagement editor for the Burlington Free Press. Email him at email@example.com, or chat with him on Twitter: @asoga.