Heidi Barrett has a complicated relationship with prescription drugs.
On one hand, they help the Everett resident and four of her five children cope with the intense joint pain caused by a genetic form of arthritis.
On the other, Remicade, the prescription drug Barrett and her children take, has drained the family’s finances, destroyed retirement funds and forced them at times to choose between putting food on the table or living a pain-free life.
“We’ve gone through all our money so our kids have a better life,” Barrett said. “And what I mean by that is so that they can walk.”
The cost of some prescription drugs and their impact on health care affordability have come under scrutiny in the state Legislature as lawmakers try to introduce more transparency into the drug-pricing process.
Three bills aimed at freezing or lowering the cost of prescription drugs have been introduced in the 2018 legislative session. All three cleared a Friday legislative cutoff, including one contentious effort to require drug manufacturers to share data and justify price increases with state officials.
House Bill 1541, which narrowly passed the House along a party-line vote earlier in the month, was voted out of the Senate Health and Long Term Care Committee on Friday.
Republican lawmakers opposed the measure. Some said they believed the bill penalizes manufacturers and doesn’t do enough to hold insurers and other health care entities accountable for their role in drug prices.
Democrats behind the measure said they believe added transparency would prevent drug price increases and their impact on state health care costs.
“People are having to pay more out-of-pocket costs, higher premiums and higher patient shares for health care,” said state Rep. June Robinson, the Everett Democrat sponsoring HB 1541. “And prescription drugs are a big part of that, and they’re a big part of the continuously rising cost of health care.”
Some pharmaceutical companies say their prices reflect the high cost that goes into researching and developing new drugs. One Tufts University study from 2014 placed that number at more than $1 billion per new drug.
Price spikes among older and generic drugs have led others to believe drug companies take advantage of patent protections provided under federal law to impose monopoly pricing.
Some long-existing drugs like Epipen, the life-saving medicine for people with severe allergies, have seen enormous price spikes in recent years. The drug cost more than $600 in 2016; in 2007 — the year the pharmaceutical company Mylan acquired its rights — it cost less than $100, according to data obtained by The New York Times.
“These medicines have been going up and up and up, and for no explicable reason. This poses a huge hardship on patients who have no choice but to take these drugs,” said David Grossman, a senior investigator for the Kaiser Permanente Foundation Washington Health Research Institute.
Pharmaceutical manufacturers would be required under HB 1541 to report data on prescriptions with the highest yearly price increase to the state Office of Financial Management. Manufacturers also would have to notify the same office if they increase a drug’s cost by more than 10 percent in one year or 25 percent over three.
The proposed requirements come as people across the country struggle to cope with rising drug costs.
Roughly one in seven Americans who regularly take medications have opted to not fill their prescription in the face of these costs, according to a survey of 1,000 people from the non-profit consumer interest group Consumer Reports.
The price of Remicade — the prescription Barrett takes for her arthritis — went up by 63 percent between 2011 and 2014, according to analysis from Reuters.
Janseen, the pharmaceutical subsidiary of Johnson and Johnson behind Remicade, declined a request for comment.
Eric Lohnes, a spokesperson with the Pharmaceutical Research and Manufacturers of America, an industry trade group, said during a public hearing for HB 1541 recently that the measure targets manufacturers while ignoring the influence other health care players have on drug costs.
Those players would, however, be affected by other legislative efforts.
House Bill 2296, which unanimously passed the House, would set a cap on prescription prices covered by an insurer or pharmacy benefit managers — a middleman who sells to pharmacies. Prices would be capped at a drug’s cost without insurance. If a drug is more expensive under insurance, it’s price would be lowered to the cost without.
Insurers also would be affected by Senate bill 6147 — a measure that aims to prevent them from increasing someone’s co-payments under certain conditions, such as if it’s outside the enrollment period.
Some Republican lawmakers agreed manufacturers would be unnecessarily penalized under HB 1541.
“How many other private businesses do we ask to do this?” said state Rep. Joe Schmick, a Republican from Colfax. “We are singling out pharma to give that information up.”
Others say more transparency would prevent drug manufacturers from exploiting rights granted to them under a decades-old federal law.
The Drug Price and Competition and Patent Term Restoration Act grants temporary, exclusive manufacturing rights to companies that develop new drugs. The law was meant to encourage investments in developing new drugs by offsetting the costs of research and development.
David Mitchell, president of Patients for Affordable Drugs, a non-profit advocating for lower drug costs, said he believes the 1984 federal law allows pharmaceutical companies to operate monopolies and raise drug prices without consequence.
Maryland, Nevada and California already have passed legislation to curb rising drug costs, according to Mitchell.
“It's a way to shine a spotlight on the predatory pricing practice of drug companies,” Mitchell said of the proposed legislation. “And the reason they fight this so hard is because they don’t want people to know how much they’re making. They don’t want people to know how badly they’re ripping off patients.”
Barrett, who testified in favor of HB 2296, said she pays almost $19,000 a year after insurance for her family’s prescriptions.
Increased transparency and capped co-pays, Barrett added, would go a long way in helping alleviate the financial sting she’s felt from drug costs.
Until then, she said she’ll continue to pay the price.
“Our medication has to come first,” Barrett said. “Our kids’ lives have to come first.”