Lawmakers call for lowering prescription drug prices

Jul. 26--Chris Noble feels fortunate.

He has health insurance through his employer, Harvard Medical School, where he works as a public health researcher. The job gives him health insurance and access to affordable insulin to manage his Type 1 diabetes.

Noble, 29, was diagnosed at age 5, and has taken the same insulin -- Humalog, manufactured by Eli Lilly -- ever since.

What Noble doesn't understand is why the drug he has taken for 24 years has skyrocketed in price, especially since it hasn't changed since he started taking it.

Noble said the price was $21 out of pocket for one vial that lasted two to four weeks. That was 24 years ago. Today, it's more than $300 for the same amount, a 1,329% increase.

The result has been a deadly outcome for some living with type 1 diabetes, Noble said, because they were forced to ration their medications so they could afford basic expenses, like food and housing.

Noble, who lives in Cambridge, is aware of four people in his age bracket who died last month because of rationing insulin.

"I'm scared, because it could have easily been me," Noble said. "I see myself in those people."

Noble also works as a campaign organizer for Health Care for All, a nonprofit advocacy group pushing for quality and affordable health care for all state residents.

On Thursday at the Statehouse, the organization released a survey it sponsored that highlights the rising costs of prescription drugs.

Findings include: 36% of Massachusetts voters are not taking prescribed medications because they can't afford them; 62% are worried about current costs; and 82% are concerned they can't pay for medications if costs continue to climb.

PerryUndem, a nonpartisan research firm, conducted the survey.

The results come as a bill calling for lower prescription drug prices winds its way through the State House.

"It really is a black box," said state Rep. Christine Barber, D-Somerville, co-sponsor of an Act to Ensure Prescription Drug Cost Transparency, to describe the lack of transparency by drug manufacturers in revealing their production costs.

State Sen. Jason Lewis, D-Winchester, is the bill's co-sponsor.

Nearly 90% of survey respondents want state lawmakers to make prescription drugs more affordable.

To get there, the bill authorizes the state Health Policy Commission to set payment limits for some high-priced drugs. The HPC is an independent state agency that monitors health care spending growth.

Barber said some new drugs to fight rare diseases are naturally expensive. But in cases like insulin and EpiPens that have been on the market for years, but experience a sudden spike in costs, she believes there needs to be greater public understanding of why that happens.

"We need to get under the hood (of drug manufacturers)," Barber said.

The bill also requires pharmacists to inform customers if it's cheaper to buy a drug at retail price instead of using insurance, and reins in what it calls "abuses" by pharmacy benefit managers -- middlemen who negotiate drug prices between manufacturers and insurance companies.

Pharmacy benefit managers would be licensed by the state Division of Insurance. Nearly 30 states require licensure, according to Alex Sheff, co-director, policy and government relations at Health Care for All.

Permanent funding for HPC and state Department of Public Health researchers to give doctors unbiased information of drug options is also in the bill. This would combat the current practice of drug-company representatives meeting with doctors to push certain medications, Sheff said.

Another of the bill's components -- permanent funding to provide tools to boost MassHealth's ability to negotiate lower drug prices -- was included in the compromise state budget approved last week. It requires Gov. Charlie Baker's signature.

As for the bill's status, the Health Care Finance Committee held a hearing earlier this year, and Barber is hopeful the Health Care for All-sponsored survey will boost support.

The Massachusetts Prescription Drug Affordability Coalition backs the bill.

"Good conversations (about the bill)" are happening with insurance companies, Barber said.

The same can't be said for the status of talks with drug manufacturers.

"I don't think they're really in favor of (the bill)," Barber said.

Noble worries about patients paying out of pocket, faced with the hard choice of using limited dollars for medications or food.

"Needless deaths," is how Noble described those dying because they have to make those choices.

"There's not a justifiable reason for drug prices being so high. I hope (state) lawmakers will do the right thing, and start enacting some of (the bill's) solutions.

Henry Schwan is the health reporter for the MetroWest Daily News. Follow Henry on Twitter @henrymetrowest. He can be reached at [email protected] or 508-626-3964.

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