Cody Ivie never knows for sure how much his insulin will cost him.
His copay recently climbed $100 a month, he said — and that's nothing compared to his costs when he was on the insurance provided at his previous job.
"At one point I was paying $1,100 a month," said the Pleasant Grove washing machine technician. "I was getting payday loans just to survive."
A bill in the Utah Legislature would cap copays for insulin at $30 per month unless the insurer places the diabetes treatment in its lowest-cost drug tier and waives the deductible.
HB207, filed Tuesday by Rep. Norm Thurston, R-Provo, also would create a way for state employees to purchase insulin at a discount, and would authorize pharmacists to dispense insulin in some cases when diabetics aren’t able to visit a doctor in time to renew their prescriptions.
But the copay cap has been a major wish list item for many diabetic Utahns since Colorado passed a similar measure last year.
"It's a lot of money for some families, especially if they have more than one diabetic in their home," said Mindie Hooley, who founded Utah's #InsulinForAll chapter after she learned that her diabetic teenage son was secretly rationing his insulin because he was afraid his parents couldn't afford the $800 monthly cost.
Hooley and other Utah diabetics this summer began collecting people’s leftover insulin — usually because a prescription changed or a patient in the family died — and delivering it to families along the Wasatch Front.
As word of this informal “gray market” has spread, Hooley said, the desperate requests have piled up. “They’re emailing me, going, ‘I don’t know what to do,’” she said.
Patients with Type I diabetes typically require supplemental insulin every day to regulate their blood sugar. If a diabetic’s blood sugar gets too high, blood becomes acidic, causing loss of consciousness and eventually death. Too low, and the patient can slip into a coma.
That makes insulin a crucial, life-saving daily treatment. But one in four diabetics is using less insulin than they are prescribed because they cannot afford it, according to a study published this year by the American Medical Association. Rationing can be deadly — and even if patients survive, persistently unstable blood sugar can cause severe and long-lasting damage to the body.
Ivie, 46, said that has been the case for him — and for his younger brother, who also is diagnosed with Type 1 diabetes.
“I have rationed insulin many times just to make it last. It really affected me, and it affected my little brother the same,” Ivie said. “It cost him his eyesight, and a lot of damage to my body — to my kidneys and everything.”
Copay caps have generated interest nationwide since Colorado implemented a $100 cap on copayments in 2019. Illinois’ governor signed a $100 cap into law last week, and state lawmakers have considered similar measures in Florida, Massachusetts, Michigan, New Jersey, New York, Ohio, Pennsylvania, and Wisconsin.
A cap is relatively popular in Utah. A survey of more than 800 Utahns, released this month by UtahPolicy.com and Y2Analytics, showed 78% approval for a cap like Colorado’s. More than 27,000 people have signed a petition Hooley created last year in support of a Utah copay cap.
Thurston said his proposal is not a cap, per se, in that it doesn’t restrict copays across the board. As long as a plan treats insulin like other preventive drugs — covering it 100% or putting it in the lowest-cost “tier” of drugs, and exempting it from deductible requirements — that plan wouldn’t be subject to the cap, he said. Recent changes to federal tax law enable high-deductible plans to cover insulin as a preventive drug for the first time, he said.
“I’m creating an incentive program for health plans that are proactively finding ways of reducing barriers for employees,” Thurston said. “If health plans are not willing to do that, then we’re going to have a cap.”
The bill does not apply a cost threshold where the cap would take effect, Thurston said. It only requires that plans put insulin in its tier of drug coverage with the lowest copay. It’s not clear how much an insurer could require a client to pay for insulin, even in the lowest-cost tier.
At $30, the proposed cap would be lower than what other states have considered — but for a drug that is so critical for the patients who need it, the cost should be lower still, Thurston said. “Health plans should find a way to have insulin have zero copays, zero deductibles — or very close to zero,” he said.
Thurston also noted that his bill leaves out one group of patients. “Nothing here would really be all that helpful to somebody who has no insurance,” he acknowledged.
Lawmakers need to find a way to fill that gap, Hooley said. “I want the insured and uninsured to be covered in having no costs,” she said. “This is a lifesaving medication and we’re wanting this to be accessible for anybody.”
But for Hooley, who has been meeting with legislators for months in search of solutions to exorbitant costs for insulin and diabetic supplies, the prospect of a copay cap failing in the legislature this year is "terrifying."
“That means a whole other year to try to get legislation started up again,” she said. “In the meantime, people are rationing and then there are deaths. We desperately need their votes and need them to listen. It seems like every month, the cost of insulin just goes up and up and up, for no reason at all.”