Samantha Merwin hoped to put money away in a college fund for her 13-year-old son, Logan.
But instead, any savings have gone into a health account that’s intended for Logan to use in his young adult years as he manages Type 1 diabetes, a lifelong chronic disease.
“We fear regularly that he may not have access to insurance during and after his college years if the laws change,” Merwin said. “If he does, is he going to be able to afford his cost share? Will he have access to medical care, to be able to get his prescription for insulin?”
The Merwins, who live in Haddam, were among diabetes advocates who spoke Thursday in Hartford as lawmakers unveiled legislation that seeks to make diabetes treatment and care more affordable to Connecticut residents.
The legislation comes at a time when the cost of insulin, an essential medication for people with Type 1 diabetes, has skyrocketed nationwide.
National reports show that insulin prices have doubled in recent years. A 2019 report from the Health Care Cost Institute, a nonprofit research organization, found that the average amount a patient spent in a year on insulin jumped from $2,864 to $5,705 in a four-year period.
Advocates said the high prices have put the medication out of reach for many -- some people have died while rationing supplies of insulin. Others, like Tom Dykas of Groton, have come close. He had trouble getting a refill of insulin over the holidays, which led to diabetic ketoacidosis, a condition that can lead to death.
“I somehow made it to the emergency room just in time,” he said. “I was one of the lucky ones, but there are way too many out there that have died trying to solve the issues around obtaining their insulin.”
The bipartisan state legislation would cap the out-of-pocket cost to patients at $50 for a month’s supply of insulin. It would also limit the costs for other diabetes treatment supplies like glucose monitors, syringes and test strips to $100 a month.
“It shouldn’t be unreachable for a parent to be able to afford to provide a continuous glucose monitor of insulin for their child, and it shouldn’t be a mortgage payment to pick up three months of insulin,” Merwin said.
The Connecticut legislation was modeled after similar bills passed in Colorado and Illinois.
The proposed protections, however, are limited under state insurance law -- the caps and other provisions in the bill would apply to state-regulated insurance plans, but not to other types of private employer-sponsored plans, which provide insurance to a large percentage of Connecticut’s residents.
However, some large insurance companies have voluntarily limited out-of-pocket costs for insulin medication. Cigna last year announced that eligible members with diabetes would pay no more than $25 for a 30-day supply of insulin.
The legislation also seeks to expand the state’s emergency refill law by allowing patients to get an emergency supply of insulin from a pharmacist without a prescription up to three times a year.
Dykas, a member of the advocacy organization Connecticut #Insulin4All, said this would have helped him when a pharmacist couldn’t get an immediate refill order for insulin from his doctor over the holidays.
The state also plans to create a fund that would help Type 1 diabetics who need insulin but can’t afford it.
Sen. Kevin Kelly said all of this will help people overcome barriers to care and treatment -- especially accessibility and affordability issues.
“There are cost impediments to people getting access to the care that they need that have a severe and significant impact on their health,” he said, “not only from a human perspective and from a life-threatening perspective, but also the resulting health care costs incurred by an individual who goes without insulin that hurt the entire system.”
A public hearing on the bill is scheduled for Feb. 25.
