Coughlin changes hats at hearing on drug pricing
Pharmaceutical pricing legislation picking up steam
By 
AT A PACKED STATE HOUSE hearing Thursday on legislation to rein in the cost of pharmaceuticals, MassBIO CEO Robert Coughlin and two of his national colleagues were pitching the same argument they’ve been using for a long time – that any form of price control would jeopardize a thriving local industry and hinder the development of breakthrough drugs.
Coughlin and his colleagues didn’t seem to be making much headway in a room filled with lawmakers, patients, and advocacy groups anxious about the soaring cost of drugs, including basic drugs like insulin. Coughlin acknowledged “drug pricing is clearly top of mind in the State House and among all your constituents.”
But then Coughlin said he wanted to take off his hat as the head of MassBIO and “put on my cystic fibrosis dad hat.” With that rhetorical gear shift, Coughlin temporarily changed the tone of the discussion, using his personal story to illustrate his larger policy position.
The MassBIO chief has a son who was born with cystic fibrosis. Coughlin reminded the lawmakers that he was once a member of the House and was also very active in raising money for the Cystic Fibrosis Foundation. When his son was a baby, Coughlin said, he wasn’t optimistic that a drug would ever be discovered that would save his life. But now he is convinced that Vertex Pharmaceuticals of Boston in six months will gain approval to start selling a drug that can help his son, who turns 17 on May 1.
But Coughlin said the new drug will also save money, both in the short term and the long term. “It will save millions of dollars in reduced hospitalizations. These patients won’t be on $100,000 to $200,000 chronic therapies, liver transplants, lung transplants. But I can’t help but think of 12 to 14 years from now, when that drug is generic, cystic fibrosis is not going to be an expensive disease anymore. That’s a wonderful thing. So we need to keep in mind, how do we make these reforms and how do we change the rules and the law and the regulations so we do generate access for sick people.”
Some form of pharmaceutical pricing legislation seems likely to pass this session on Beacon Hill. The budget proposals of both Gov. Charlie Baker and the House Ways and Means Committee (released on Wednesday) include provisions to give state officials more control over drug pricing. The Health Care Financing Committee heard testimony on Thursday about legislation that would allow state agencies to set upper price limits for drugs deemed to be of “excessive cost.”
Mary Mack of Nantucket, who appeared on a witness panel put together by the advocacy group Health Care for All, said she suffers from advanced heart failure and muscular dystrophy. A drug approved in 2015 offered significant relief, but her monthly insurance copay was $150, which later jumped to $225.
She said she stopped taking the drug for awhile because her family wasn’t able to pay its other bills. But once the car loan was paid off she went back on the drug. Mack said families shouldn’t be forced to choose between life-saving medications and the other necessities of daily life.
Coughlin implored members of the committee to run any pharmaceutical legislation through the traditional legislative process and not pass it in an outside section of the state budget, as Baker and House leaders are attempting to do.
“You have had that opportunity and you haven’t done it. In all due respect, we want you at the table but we need you to be equal partners and be willing to understand that you have skin in the game, we have skin in the game, everyone in this room does,” Friedman said. “If we continue to have these prices, it doesn’t matter how great the drug is because nobody’s going to be able to afford it.”