Drugmaker Leaves Lobbying Group After Price Controversy

  • Marathon Pharmaceuticals is no a longer member of PhRMA
  • PTC Therapeutics plans to give pricing info on May 4 earnings

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Marathon Pharmaceuticals LLC left the drug industry’s main Washington lobbying group on Thursday, said two people familiar with the matter, after a controversy over the high price of its rare-disease drug.

Pharmaceutical Research and Manufacturers of America, or PhRMA, began reviewing its membership criteria after Marathon said in February that it would charge $89,000 a year for the drug Emflaza, generic versions of which were previously available to U.S. patients from overseas pharmacies for about $1,000. The move by closely-held Marathon drew criticism from patients, lawmakers and other members of the industry.

The departure from PhRMA was described by people who spoke on condition of anonymity because the matter hasn’t yet been made public. Marathon and PhRMA declined to comment, though the company no longer appears on PhRMA’s website as a board member.

Emflaza is used to treat a lethal muscle disorder that affects mostly young boys, called Duchenne muscular dystrophy. Following the outcry over the price, Marathon in March agreed to sell the drug to PTC Therapeutics Inc. for $140 million, plus additional payouts based on annual sales. The deal closed Thursday, according to a statement from the company. Marathon informed PhRMA it was departing the same day, according to a copy of the message obtained by Bloomberg.

“With Marathon’s sale of Emflaza to PTC, Marathon is discontinuing its membership in all relevant trade associations,” the company wrote.

PhRMA, which includes most of the world’s biggest drugmakers, has been trying to address ongoing questions over drug prices in the U.S. The group and its members have become critical of companies that introduce high-priced versions of older medications without making significant medical advances.

PTC plans to outline pricing and access programs for Emflaza on its first quarter earnings call, the timing of which hasn’t yet been announced, spokeswoman Jane Baj said in an email Friday. The company is speaking with Duchenne muscular dystrophy patient groups, she said, declining to comment on Marathon’s departure from PhRMA.

Shares for South Plainfield, New Jersey-based PTC were up 1.6 percent to $11.43 at 2:34 p.m. in New York. 

(Adds share price in last paragraph. An earlier version of the story was corrected to say company’s earnings call hasn’t been announced yet.)
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