Christine Stuart / ctnewsjunkie
Logan Merwin talks about what it’s like to live with Type 1 diabetes (Christine Stuart / ctnewsjunkie)

HARTFORD, CT – Haddam student Logan Merwin has been the owner of a “mostly useless pancreas” for 11 years and during that time his family has struggled with the cost of insulin and insulin supplies.

He said the cost of the insulin he needs to stay alive is “ridiculous.”

He said if insulin continues to climb he will have to pay over $1,000 per month for the life-saving drug.

He’s not alone. According to the Centers for Disease Control there are 100 million adults living in the United States with diabetes. An estimated 11.4% of Connecticut’s population has diabetes, and 36.5% with prediabetes. Diabetes is the seventh-leading cause of death in Connecticut and the cost of insulin continues to rise.

The average annual cost of insulin in 2016 for individuals with type 1 diabetes was $5,705 per-person, up from $2,864 in 2012.

Rep. Sean Scanlon, D-Guilford, said under legislation the Insurance and Real Estate Committee proposed Thursday, Merwin would only have to pay $50 per month for his insulin and $100 per month for his supplies.

“This is not something Logan should be worried about,” Scanlon said.

The legislation, which replaces language that called for a “fee on the manufacture and distribution of insulin,” would cap the cost of insulin at $50 per month and the cost of diabetes supplies at $100 per month and it would allow patients to go to the pharmacist up to three times per year to get insulin on an emergency basis without a prescription. The draft bill also seeks to create a fund to assist low-income type 1 diabetics with access to insulin.

Samantha Merwin said they’re lucky they have insurance through their employer, but the out-of-pocket costs on their high deductible plan are high and they continue to grow.

“With insurance coverage we still spend thousands of dollars a year keeping Logan alive,” she said.

She said their insurance company has capped out-of-pocket costs for insulin, but “that can change at any time if our employment or insurance changes.”

The proposed legislation also won’t apply to all Connecticut residents. The proposed insulin cap will only apply to about a third or 32% of the marketplace who have state-regulated insurance plans, according to the Insurance Department. That’s because the Insurance and Real Estate Committee only has the authority to make changes to laws that impact the state-regulated insurance market. It means this proposed insulin cap won’t directly impact residents who get their insurance through large employers that are self-insured and are governed by federal law.

Sen. Matt Lesser, D-Middletown, refused to concede that the legislation might not have a bigger impact on insurance products that his committee doesn’t regulate.

Scanlon said it will help move the conversation because Connecticut would become the third state in the nation to pass this type of legislation. Illinois and Colorado already adopted similar laws.

Scanlon said that multiple states passing similar laws might force the federal government to tackle an issue like this.

Republicans, who offered their support for the legislation at a press conference Thursday, voted against the bill in committee because the committee was unable to substitute the new insulin cap language for the original one that sought to impose a fee on the manufacture and distribution of insulin.

Sen. Kevin Kelly, R-Stratford, spoke in favor of the legislation during the press conference, but voted against the bill in committee.

“I’m a little reticent to vote to draft an already public document that’s going in a different direction than the bipartisan approach would contemplate,” Kelly said.

The language in the bill that’s already online calls for the Department of Consumer Protection to “impose a fee on the manufacture and distribution of insulin.”

Scanlon and Lesser said that the manufacturing fee will not be part of the new language. They promised the new language would be exactly what was described at the press conference minutes before the meeting.

Kelly said he supports the bipartisan proposal they talked about at the press conference, but voting to raise SB 1 makes it look as if they are endorsing that language.

Lesser said he regrets the distraction the language caused, but it’s not their intention to impose a fee on the manufacture of insulin.

The public hearing on the legislation will be held Feb. 25.