Cody Ivie never knows for sure how much his insulin will cost him.
His co-pay recently jumped $ 100 a month, he said – and that is nothing compared to his costs when he had the insurance provided at his previous job.
“At one point, I was paying $ 1,100 a month,” said Pleasant Grove washing machine technician. “I was getting payday loans just to survive.”
A Utah Legislature bill would cap the co-pay for insulin at $ 30 per month, unless the insurer puts diabetes treatment in its cheapest drug tier and waives to the franchise.
HB207, filed Tuesday by Representative Norm Thurston, R-Provo, would also create a way for state employees to purchase insulin at a discount and allow pharmacists to dispense insulin in some cases when diabetics are not able to see a doctor in time to renew their prescriptions.
But the copayment cap has been a major item on the wishlist for many Utahns with diabetes since Colorado adopted 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 learning that her teenage son with diabetes was secretly rationing his insulin because he was afraid his parents couldn’t afford the monthly cost of $ 800.
Hooley and other diabetics in Utah this summer began collecting people’s leftover insulin – usually because a prescription has changed or a family patient has died – and delivering it to families on the day. along the Wasatch front.
As word of this informal “gray market” spread, Hooley said, desperate demands have piled up. “They email me saying ‘I don’t know what to do’,” she said.
[Read more: As costs of insulin rise, Utah diabetics are going online to plead for the drug from strangers]
Patients with type I diabetes usually need extra insulin every day to regulate their blood sugar. If a diabetic’s blood sugar gets too high, the blood becomes acidic, causing unconsciousness and possibly death. Too low, and the patient may fall into a coma.
This makes insulin a crucial and life-saving daily treatment. But one in four diabetics uses less insulin than prescribed because they cannot afford it, according to a study released this year by the American Medical Association. Rationing can be fatal – and even if patients survive, consistently unstable blood sugar levels can cause serious and lasting damage to the body.
Ivie, 46, said that was the case for him – and his younger brother, who was also diagnosed with type 1 diabetes.
“I rationed the insulin several times just to make it last. It really affected me, and it affected my little brother as well, ”said Ivie. “It cost him his eyesight and a lot of damage to my body – my kidneys and everything.”
Quota caps have sparked nationwide interest since Colorado implemented a $ 100 quota cap in 2019. The governor of Illinois enacted a cap of $ 100 last week, and state lawmakers 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 that Hooley created last year in support of a copay cap in Utah.
Thurston said his proposal was not a cap per se, as it did not restrict quotas at all levels. As long as a plan treats insulin like other preventative drugs – either covering it 100% or placing it in the cheapest “tier” of drugs and exempting it from deductible requirements – that plan would not be subject to the. ceiling, he said. . Recent changes to federal tax law allow high-deductible plans to cover insulin as a preventative drug for the first time, he said.
“I’m creating an incentive program for health plans that proactively find ways to lower barriers for employees,” Thurston said. “If the health plans aren’t willing to do it, then we’re going to have a cap. “
The bill does not apply a cost threshold where the cap would come into effect, Thurston said. It only requires that plans put insulin in its lowest copayment level of drug coverage. It is not clear how much an insurer could charge a customer to pay for insulin, even at the lowest level.
At $ 30, the proposed cap would be lower than what other states have considered – but for a drug so essential for patients who need it, the cost would have to be even lower, Thurston said. “Health plans should find a way to ensure that insulin has no copayments, no deductibles – or very close to zero,” he said.
Thurston also noted that his bill leaves out a group of patients. “Nothing here would be really helpful to someone who has no insurance,” he admitted.
Lawmakers must find a way to close this loophole, Hooley said. “I want insured and uninsured to be covered at no cost,” she said. “It’s a life-saving drug and we want it to be available to everyone. “
But for Hooley, who has met with lawmakers for months to find solutions to the exorbitant costs of insulin and diabetic supplies, the prospect of the legislature’s quota cap failing this year is “terrifying.” “.
“It means a whole other year of trying to revive the legislation,” she said. “In the meantime, people are rationing themselves and then there are deaths. We desperately need their votes and we need them to listen to us. It seems that every month the cost of insulin keeps increasing for no reason. “