It was just a year ago that Eli Terris of Hamden was diagnosed at 30 years old with Type 1 diabetes, a lifelong chronic disease that requires a medication called insulin.
And the hardest part for him? Having to navigate health insurance and the costs for his disease treatment.
“I have spent more hours than I would like to have counted on the phone with health insurance representatives, on the phone with manufacturers, on the phone with medical supply distributors,” he said, “and it’s just really aggravating and frustrating. And that, honestly, is above and beyond the worst part of the transition -- more than the injections and the finger pricks and the dietary changes.”
Terris was among diabetes advocates at a public hearing in Hartford Tuesday who testified in support of a bill that would cap out-of-pocket costs to patients for things like insulin, glucose monitors, test strips and other supplies as health care prices continue to skyrocket.
“There’s just a lot of people who are really being confronted with the list price of insulin and other diabetes supplies,” he said. “I think it’s really important to try and support that community as best we can, to minimize the anxiety and the financial ruin that a lot of people are facing to have to make these choices.”
National reports show that insulin prices have nearly 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.
People on state-regulated health plans would pay no more than $50 for a month’s supply of insulin under the proposed legislation. It would cap other diabetes supplies at $100 a month.
Ted Doolittle, the state’s Healthcare Advocate, said shifting the financial burden away from individuals and families who are living with this disease is “wise policy.”
“It’s a smart investment to get people to have and take their insulin so that the health system is spared from dramatic expenses when they don’t,” he said.
Doolittle also said that putting this share of costs on insurance plans may increase premiums across the board, but he called it a good thing.
“It’s the right place to put that risk instead of foisting it on the individual families that suffer from diabetes and are less able to pay it,” he said. “They are our brothers and sisters, it’s our community. The cost should be spread as widely as possible.”
About one in 10 people nationally have some form of diabetes, according to the American Diabetes Association. The disease puts people at risk for other medical conditions, and it usually requires continuous health care.
Of those people, about 1.6 million live with Type 1 diabetes, an autoimmune disease that can be managed but not cured.
In addition to capping costs, the Connecticut bill would also create a fund to help low-income diabetics pay for treatment, and allow pharmacists to issue an insulin refill without a prescription in emergency situations.
While the legislation tackles insurance coverage, Doolittle said it could do more to get at the root of the problem.
“This committee should consider strengthening the bill or having some type of separate legislation that actually goes toward the high price of insulin,” he said. “The high price of insulin is driving all this.”
Doolittle’s suggestions included requiring doctors and pharmacists to first look at cheaper alternatives before prescribing a particular brand of insulin, creating a better system for those health providers with real-time information on medication prices and costs to their patients, and directing the state to closely monitor insulin prices and prescribing trends.
Cathy LaBrecque, a Simsbury resident who lives with Type 1 diabetes, said solutions to the issues facing diabetics need to come from all sides and all levels of government in order for people to truly benefit.
“Since all of the expenses got so much more incredible, it’s a shock and you have to give things up in order to give attention to other important parts of your life,” she said. “So to make it more equitable, I think it’s really important we do something like this.”
But the legislation is limited under insurance law -- it’ll apply to state-regulated health insurance plans like ones offered through Access Health CT, but it won’t directly help people who get insurance through self-insured, large employer-sponsored plans, which fall under federal law.
“And so one of the things we’re sort of wrestling with is, OK, so if there are folks who have high deductible health plans who don’t have affordable access to insulin, but they’re not regulated by the state of Connecticut, what can we do?” asked Sen. Matt Lesser, who chairs the state Insurance and Real Estate Committee.
Lawmakers said changes to the bill are likely as it moves forward. It will need to pass out of committee before making it to the General Assembly for further consideration.