WASHINGTON (Reuters)—Two U.S. lawmakers have called on privately held Marathon Pharmaceuticals LLC to explain how it came to price its newly approved drug to treat Duchenne muscular dystrophy at $89,000 a year when patients have for decades been able to acquire it overseas for as little as $1,000.
The drug, Emflaza, known generically as deflazacort, is a steroid, one of a class of drugs commonly used to treat Duchenne’s that patients could import for personal use because it was not available in the U.S. Last week, it won U.S. approval, closing off that option for patients.
“We are investigating how Marathon set its price for this drug and how much the company stands to make as a result,” Sen. Bernie Sanders (I-Vt.) and Rep. Congressman Elijah Cummings (D-Md.) wrote in a letter to Marathon Chief Executive Officer Jeffrey Aronin on Monday, adding that the price tag was “outrageous.”
Drug pricing is a hot political issue. Democrats and Republicans have both investigated Mylan NV for sharply increasing the price of its emergency EpiPen allergy treatment. Last year, Turing Pharmaceuticals became a household name after it dramatically increased the price of an important antibiotic.
President Donald Trump has said he wants to lower drug prices and increase competition, though he has not spelled out how.
Marathon officials did not immediately respond to a request for comment. In an interview last week, the company’s chief financial officer, Babar Ghias, said Marathon took the pricing issue “very seriously” and that its goal was to ensure patients can access the drug for zero to low cost.
The company said the price of the drug reflected its investment in the product.
The U.S. Food and Drug Administration approved Emflaza under its “orphan” drug program that provides incentives to drugmakers to develop treatments for diseases with small patient populations. The incentives include seven years of market exclusivity. Duchenne’s, a devastating muscle-wasting disease, affects some 15,000 patients in the United States, mostly young boys.
“Marathon will have a monopoly on deflazacort for years to come, preventing less expensive generic competitors from entering the market, despite the fact that this drug is already available in generic form in other countries,” the lawmakers wrote.