NEWPORT — In 1993, at the beginning of Jeanne Brown’s career as a diabetes educator — which was motivated by her grandfather’s experience with Type I diabetes — she spent most of her time talking with patients about exercise, nutrition, foot care and what it’s like to live with a chronic disease.
Now, Brown spends most of her time figuring out what type of insulin patients can afford.
During a Friday morning roundtable at the Newport Health Center with U.S. Sen. Jeanne Shaheen, Brown, who works at Concord Hospital, unfurled a chart she uses when working with patients. The chart, which takes up several 8-by-11-inch sheets of paper, includes 27 different types of insulin and the cost to patients under coverage by the various insurers.
As a result, sometimes the patients wind up with what they can most afford, not necessarily the best for their ailment.
“Even though I might think that one insulin would be better than another, that’s not what we end up putting them on a lot of times,” Brown said.
More than 30 million people in the U.S., about 9% of the population, have some form of diabetes, according to the Centers for Disease Control and Prevention.
The pancreas of a person with Type I diabetes — often diagnosed in childhood — does not make the hormone insulin, which is necessary for the body to convert glucose from food to energy. In a person with Type II diabetes, which can be diagnosed at any age, the body does not make or use insulin well.
Shaheen, D-N.H., gathered the group of providers and patients together to get support for a bill, the Insulin Price Reduction Act, she’s put forward with a bipartisan group of legislators including Sens. Susan Collins, R-Maine; Tom Carper, D-Del.; and Kevin Cramer, R-N.D.
They acted after the average cost of a 40-day supply of insulin nearly doubled from $344 in 2012 to $666 in 2016, following a decade in which insulin prices nearly tripled, according to a summary of the bill on Shaheen’s website.
Under the bill, pharmacy benefit managers and insurers would be barred from collecting rebates or other payment for insulin products purchased from manufacturers who reduce the 2020 list price of their product to the 2006 list price. To continue under the rebate restriction in the following year, manufacturers would be required to limit their list price increase to no more than medical inflation for the year.
Additionally, the bill would require that pharmacy benefit managers and private insurers waive the deductible for any insulin product that meets the list price reduction requirement.
“It’s an attempt really to address the high cost of insulin,” Shaheen said.
Lois Palmer, of Andover, N.H., told Shaheen that her household budget is stretched thin by the high cost of insulin. In just months, Palmer said the cost of one insulin product her husband, Darrel, a retired mechanic, requires to manage his Type II diabetes spiked from $84 for a three-month supply to $1,000.
“I was like, ‘Oh, my god,’ ” she said. “I hadn’t planned on that.”
Though the Palmers, who are both 79, were able to get some help from New London Hospital in covering the cost of the insulin, they said it was a challenge to juggle these costs along with car payments, rent and other regular household needs. At one point in order to afford the insulin, Lois said they dropped a car payment.
She said she is dreading going to pick up one of Darrel’s insulin products next week.
“That’s all I’ve got left in my checking account is to pay for that,” she said.
Brown and other providers in attendance described patients whose diabetes is getting out of control because they are rationing their insulin in order to save money. In one instance, Brown said one of her patients with a high-deductible health insurance plan found himself in the hospital with a leg wound that wouldn’t heal because he wasn’t able to afford the insulin he needed to keep his disease under control.
Some of those gathered compared the ripple effect of the high cost of insulin on families to the effect of the opioid epidemic.
“It really is evolving into a crisis because so many people have diabetes,” said state Rep. Karen Ebel, D-New London, who is also a trustee of New London Hospital.
Also on Friday, drugmaker Eli Lilly disclosed in a filing with the Securities and Exchange Commission that the New York Attorney General’s Office hit it with a subpoena related to the pricing and sales of its insulin products.
Chris Lopez, a clinical pharmacy specialist at New London Hospital, said that insulin isn’t the only pharmaceutical that patients are struggling to afford. He also sees patients who can’t afford inhalers and blood thinners.
He said that in addition to illustrating the challenges of high insulin costs, the Palmers also illustrate the need to reform Medicare Part D, which provides drug coverage for seniors but still leaves them subject to a deductible and with a gap in coverage during the year.
Though he understands that making changes to the government payers Medicaid and Medicare can be a challenge, he said, “It’s sad what people have to do to make it work.”
The discussion came the same week that the Trump administration announced plans that might lead to the importation of drugs from Canada.
On Friday, Shaheen said she would be looking for details about how the Trump administration plans to begin importing drugs from Canada but that reforming government health care programs to allow the Centers for Medicare and Medicaid Services to negotiate with pharmaceutical companies would make a bigger difference in reducing costs for consumers.
Queries about the positions on drug pricing of three Republicans seeking to challenge Shaheen for her seat in 2020 were not returned on Friday.
Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.