STATE HOUSE, BOSTON, APRIL 11, 2019.....Members of the Health Care Financing Committee on Thursday pressed pharmaceutical industry representatives to identify ways drug manufacturers can help bring more transparency to their pricing and lower costs for consumers.

"You all have had a long time to be transparent," Sen. Cindy Friedman, the committee's Senate chair, said. "Pharmaceutical companies have had a long time to come to the table and say let us be as transparent as our insurance companies are and like all the other parts of health care that we patrol. You have had that opportunity, and you haven't done it. With 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, everybody in this room does."

Friedman directed her comments to Leslie Wood of the Pharmaceutical Research and Manufacturers of America, Patrick Plues of the Biotechnology Industry Organization, and Robert Coughlin of the Massachusetts Biotechnology Council, who testified together during a hearing on drug pricing, access, and transparency bills.

The hearing, at its outset, was so crowded that advocates and interested parties spilled out of the open doorways into the hall. Much of the testimony focused on legislation filed by Sen. Jason Lewis and Rep. Christine Barber that takes various steps in hopes of managing the rising costs of prescription drugs, which Lewis said was the most urgent health policy issue facing lawmakers.

He said prescription spending in MassHealth has doubled over the past five years, growing at twice the rate of other MassHealth spending.

"To date, we've seen that hospitals, insurers, businesses, providers, and consumers have all made meaningful contributions and sacrifices to ensure health care coverage for all residents and to help contain health care costs, while up until now the pharmaceutical industry and pharmacy benefit managers have not been held accountable to be part of the solution," Lewis said.

Barber said their bill (H 1133, S 706) would regulate pharmacy benefit managers, which she said are "basically unregulated" in Massachusetts now, require pharmacists to tell patients if the retail price of a drug is cheaper than the co-pay if they use their insurance, and require more transparency around the pricing and costs of drugs.

The bill would also authorize the state Health Policy Commission to set an upper price limit on drugs deemed to have unreasonably high costs.

"Prescription drugs do not work if people cannot afford them," Barber said.

Health care expenditures in Massachusetts totaled $61.6 billion in 2017, representing 1.6 percent growth from the previous year, according to the Health Policy Commission. Pharmaceutical spending was among the fastest growing categories, at 4.1 percent.

"Drug pricing is clearly top of mind inside the State House and for all of your constituents," Coughlin, of MassBIO, said during the hearing. "Our industry fully recognizes this sentiment and the political pressure you're feeling to develop real solutions. As the father of a son with a fatal genetic illness, cystic fibrosis, I understand this personally as well. I'm here to tell you that our industry wants to be part of the solution."

Plues, of the national BIO group, said it costs $2.6 billion for a drug maker to bring a product from its research and development stage to market, including expenses associated with efforts that fail along the way. He said many proposals the committee is considering "create a climate that would hinder innovation" and would particularly harm small, emerging companies that are not profitable.

PhRMA's Wood said efforts to set prices for drugs could have a negative impact on the competitive market. Rep. Brian Murray, a Milford Democrat who serves on the committee, asked her what provisions of the bill PhRMA is "OK with."

Wood answered by pointing to an academic detailing component in the Lewis/Barber bill, which would fund an evidence-based educational program for prescribers. "We think that science-based information to doctors is a great idea," she said.

Rep. Jon Santiago, who serves on the committee and is also an emergency room doctor at Boston Medical Center, told his colleagues that as they hear various statistics about drug pricing, the "human side must be paramount."

The Boston Democrat said one of his patients developed the life-threatening condition diabetic ketoacidosis after not taking his insulin. The patient had been rationing his medication because he could no longer afford it, Santiago said.

"The increasing cost of insulin had almost cost him his life, not to mention costing us, the taxpayer, thousands of dollars in avoidable costs due to a lengthy stay in the intensive care unit," Santiago said.

Dr. Alain Chaoui, the president of the Massachusetts Medical Society, said rising prescription drug costs are affecting his ability to give his patients the best care he can.

Chaoui also told of a patient who went into diabetic ketoacidosis after rationing insulin, another who had a stroke after being unable to afford an anticoagulant, and a patient with severe chronic obstructive pulmonary disease who couldn't afford inhalers.

Mary Mack, a Nantucket resident who lives with advanced heart failure and muscular dystrophy as the result of a genetic defect, told the committee of her experience with a new cardiac drug that made a "significant difference" in her life.

The $150 copay was equivalent to her car payment or a round of grocery shopping for her family, but she made it work by neglecting other doctors appointments, accruing credit card debt and falling behind on bills, she said. After five months, the copay went up, and she had to stop taking the drug to make her car payments. Having now paid off her car, she's back on the medication but makes other sacrifices to afford the monthly $225 copay.

Mack said the Lewis/Barber bill would allow the state to "tell the drug companies when enough is enough and make medications more affordable to the people who need them to live."

The committee accepted testimony on roughly two dozen bills Thursday.

Also among them was a proposal from Sen. Mark Montigny (S 712), a version of which the Senate agreed to last year as part of broader health care reform legislation that ultimately collapsed in talks with the House and never became law.

Montigny's bill would require the pharmaceutical industry to testify under oath before the Health Policy Commission and submit information to the attorney general.

"The bottom line is that the current pricing schemes employed by the pharmaceutical industry are opaque, and this permits an open season on price gauging [sic] consumers, businesses and the Commonwealth," Montigny wrote to the committee, saying greater transparency would be "one clear way to hold the industry accountable without inviting a plethora of industry-backed lawsuits delaying the implementation of the law."

The Massachusetts Association of Health Plans testified in support of a Rep. Kate Hogan transparency bill (H 1162), which MAHP President Lora Pellegrini said would hold drug manufacturers to "the very same transparency and accountability standards that are required for health plans and providers in the Commonwealth."

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