Utah lawmakers and diabetics want to increase access and drop prices for insulin. Here’s how.

(Francisco Kjolseth | Tribune file photo) Packages of insulin pictured on Oct. 23, 2019, before a meeting of a local chapter of the support group T1 International in Salt Lake City.

The state of Utah could buy insulin in bulk for public employees or pay for training for health care providers in rural areas, under proposals discussed Wednesday in a news conference hosted by lawmakers and a group of Utahns with diabetes.

“Part of the challenge that individuals and families of individuals with diabetes have is they don’t know what is out there,” said state Rep. Norm Thurston, R-Provo, at the Utah Capitol. “You just don’t know where to go to get help.”

Thurston introduced a handful of proposals to provide relief to Utah diabetics and their families, who said exploding insulin costs are threatening their health and finances.

“Insulin shouldn’t cost more than my car payment, my house, or my food bill each month,” said Mindie Hooley, whose teenage son briefly rationed his insulin last year after the cost to his parents jumped to $800 a month.

Hooley and other Utah diabetics have begun to organize and discuss reforms through a statewide #insulin4all chapter of the advocacy group T1 International, which Hooley launched this year.

For example, members have watched with interest as Colorado implemented a $100 monthly copayment cap on insulin — though Thurston has said he does not believe a compulsory cap is necessary, and $100 a month is too much for diabetics to pay anyway.

Thurston previously has said he was drafting legislation to allow the state to negotiate for insulin on behalf of all Utahns. “We can cut out the rebate nonsense, the couponing — just cut it all out and negotiate a good fair price with the manufacturer,” he has said.

But on Wednesday, Thurston said he hasn’t worked out specifics in bringing the state’s diabetics together to make a bulk purchase.

“I don’t know how that’s going to happen,” he said. “I don’t know if it’s going to happen this year. It’s something I’m going to explore.”

Initially, he said, he may propose bulk purchases for public employees — a step that has been taken in several other states.

Thurston also proposed allocating funds for diabetes-management training for primary care doctors, nurses and nurse practitioners, especially those in rural areas where patients may struggle to find an endocrinologist.

“How many of you that were diagnosed with Type 1 diabetes were in the hospital because of the way you got diagnosed?” he asked, as hands shot up. “Did you know that was completely unnecessary? If more people could recognize early signs of diabetes onset, hospitalization is not a necessity. It happens because we find out about it too late.”

That was familiar to 11-year-old Pierce Peterson, who spent the weeks before his diagnosis last year feeling listless and ill but with no clear diagnosis.

“I couldn’t go out to recess, I’d just stay inside,” said Pierce, who lives in Holladay. “I had no energy.”

Getting diagnosed was a relief because he felt healthy again, he said, but it came with huge responsibilities. Pierce learned to give himself shots before he returned to elementary school. Keeping track of his blood sugar and adjusting insulin dosage accordingly — the basics of diabetes management — was “overwhelming,” said his mother, Amanda Peterson.

“It’s like a second full-time job,” she said, between managing devices, tracking Pierce’s blood sugar, making doctors’ appointments, and coping with the costs.

Pierce’s jaw dropped as his mother explained the monthly expense for insulin and devices is $600 to $700 a month — and the family still won’t meet their insurance deductible this year. Pierce had never heard the grand total before.

“You have to make sure you have good grades so you can go to college, get a good job and have good insurance,” Amanda Peterson said as Pierce mouthed along with the familiar lecture.

“Or become an NBA star,” he said.

For now, Peterson said, she isn’t holding out much hope for lower costs.

“This is like air and water. Affordable insulin is a human right, but the pharma companies know you have to have it to live,” Amanda Peterson said. “Capitalism, huh? Is it good or bad?”

“Might be a little bit of both,” Pierce replied, shrugging. “I’m going to move to Canada. I can play for the Toronto Raptors.”

During 2019, The Salt Lake Tribune is reporting on prescription drug prices in Utah through the Association of Health Care Journalists’ Fellowship on Health Care Performance, supported by The Commonwealth Fund.