U.S. Senator Bernie Sanders sent a letter to Catalyst Pharmaceuticals on Monday asking it to justify its decision to charge $375,000 annually for a medication that for years has been available to patients for free.
The drug, Firdapse, is used to treat Lambert-Eaton Myasthenic Syndrome (LEMS), a rare neuromuscular disorder, 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 intensifying its scrutiny of the pharmaceutical industry and rising prescription drug prices, a top voter concern and a priority of President Donald Trump’s administration.
That word “free” actually means something in this case:
In the 1990s, doctors in the US, on behalf of Muscular Dystrophy Association, approached a small family-owned manufacturer of active pharmaceutical ingredients in New Jersey, Jacobus Pharmaceuticals, about manufacturing amifampridine [the generic name] so they could test it in clinical trials. Jacobus did so, and when the treatment turned out to be effective, Jacobus and the doctors were faced with a choice — invest in clinical trials to get FDA approval or give the drug away for free under a compassionate use program. Jacobus elected to give the drug away, and did so for about twenty years.
But that compassion stuff buys no yachts:
Catalyst anticipated that it could earn $300 to $900 million per year in sales for treatment of people with LEMS and other indications, and analysts anticipated the drug would be priced at around $100,000 in the US.
Fooled you, analysts.