UPDATE: On Thursday evening, the Connecticut General Assembly passed legislation, by a vote of 142 to 4, that will cap the monthly cost of insulin, supplies and emergency insulin for people with insurance. According to State Rep. Sean Scanlon, D-Guilford, beginning January 1, 2022, the maximum monthly cost for insulin will be $25, for non-insulin medication $25 and for devices and equipment $100. In addition, once each year anyone with diabetes will be eligible for a 30-day emergency supply of insulin at any pharmacy in the state.
“This bill is an investment in saving lives, in saving health and in the end saving costs for both state and federal government,” said Rep. Holly Cheeseman, R-East Lyme. “Until you’ve watched someone you love, lose everything they love because of this disease, I don’t think you can understand.”
As advocates for people with type 1 diabetes pushed lawmakers at a Tuesday “listening session” of the joint Committee on Insurance and Real Estate to provide additional help to patients without insurance, Susan Halpin, executive director for the Connecticut Association of Health Plans, warned that a proposed cap on insulin prices would shift the cost onto insurers without addressing the root cause of high prices.
The draft bill would cap the price of insulin at $25 for insured patients to purchase a one-month supply of the medicine, and allow pharmacists to dispense a 30-day supply of insulin to patients without a prescription.
The bill would also create a working group to study whether more patients with diabetes can access lower-cost insulin through the federal 340b program, which allows qualified health providers to purchase prescription drugs at prices much lower than the market rate.
State representatives will vote on the legislation — a modified version of an earlier bill capping costs for insured patients at $50 a month — during special session on Thursday. That earlier legislation was under consideration in regular session of the assembly earlier this year.
Both bills cap the monthly cost of equipment used in diabetes treatment at $100.
Capping the price of insulin
The average annual cost of treatment for people with diabetes rose almost 50 percent between 2012 and 2016, from $12,467 to $18,494, according to a 2019 study by the Health Care Cost Institute.
The cost of insulin nearly doubled over the same time period, with patients spending $2,864 a year on the drug in 2012, compared to $5,705 in 2016. The cost of insulin accounted for nearly half the total increase in the average cost of treatment, according to the study.
A 2018 study of patients at the Yale Diabetes Center found that about one quarter of diabetes patients reported rationing insulin because of the high cost.
Connecticut would be the ninth state to approve a cap on insulin prices, after six states, including New York and Maine, approved caps earlier this year. The $25 cap would give Connecticut the lowest cap, along with New Mexico. Four states set their caps at $100, while Utah caps the price at $30, Maine at $35, and Virginia at $50.
Halpin assured legislators that private insurers agree that insulin is important and that the cost is prohibitive. But she argued that the cap would simply shift the costs without solving the root problem.
“It gets at the price that the consumer is going to pay out of pocket, but that price is just spread across the rest of our insured population to cover the cost of what is an overpriced product,” Halpin said. “We have to get at that before we can make sure that people have access to affordable health care that covers insulin.”
Halpin was the lone representative for insurers to speak against the cap, but some advocates for price controls further criticized the bill for not going far enough to protect people who are uninsured and have diabetes.
Eli Terris from Hamden, who has type 1 diabetes and is a member of Connecticut #insulin4all, said that the proposed bill would help people with insurance, especially state-sponsored health plans, but that it would not do much for the uninsured, people who are disproportionately people of color. Terris said that the bill was an important first step, but added that he hoped the legislature would continue to work toward a solution for the uninsured.
Another provision of the bill would allow pharmacists to dispense a 30-day supply of insulin to patients running out of the medicine, but lacking a prescription for a refill.
Kevin’s Law, as the provision is known in 19 states, is named for Kevin Houdeshell, a 36-year-old Ohio man with type 1 diabetes who died of diabetic ketoacidosis in 2014 after he could not refill his insulin prescription.
Danny Houdeshell, Kevin’s father, told the committee on Tuesday, that Kevin could not reach his doctor over the New Year’s holiday when he ran out of insulin. Aside from his diabetes, Kevin was in excellent shape and died because the laws governing emergency insulin refills were outdated, Houdeshell said.
A possible option for low-cost insulin
The bill would also create a working group to study a federal program, 340b, that allows federally-qualified health centers to purchase prescription drugs at steep discounts for their patients with low incomes.
Kristen Whitney Daniels from Shelton, who has type 1 diabetes and is chapter leader of T1International Connecticut, said a federally-qualified health center using the 340b program lowered her cost of purchasing insulin from $2,400 a month to $14. At the market price, she wouldn’t be able to afford rent, food or car payments while paying for insulin, she said.
Daniels, like Terris, said she was disappointed the bill didn’t address insulin costs for patients without insurance, but said the working group had the potential to address some of those problems. She said she was still concerned with people’s ability to access lower-cost insulin at federally-qualified health centers, and she hoped the working group could address those barriers.
“You have to see a particular doctor at a particular place in a particular city and go to a particular pharmacy,” Daniels said. “I had the means to do that, I was able to take a day off from work, but I worry about people who would also have to go through that process.”
Mark Masselli, president and CEO of Community Health Center, Inc., a federally-qualified health center based in Middletown, told legislators that the center has been using the 340b program for several years, and that it has allowed the organization to buy medications at discounts of 50 to 90 percent.
Masselli said that the working group could help study the idea of expanding the program, like extending it to private offices through a third party contractor, Masselli said.
Dr. Suzanne Lagarde, CEO at Fair Haven Community Health Center agreed that the 340b program has been great in getting uninsured or underinsured patients access to medications at lower costs. Lagarde said the program is tightly regulated, so establishing a working group to research changes is a sound approach.