Robert Gehrke: Expensive insulin is costing some Utahns their lives, and one legislator may have a solution

(Leah Hogsten The Salt Lake Tribune) "It costs over $1,000 a month to keep my child alive," said Diana Thomas, left, protesting the high cost of insulin with her daughters Grace, 13, center, and Laura, 16, to the right. Grace Thomas has diabetes. Diabetes patients, their families and supporters rallied on the Capitol lawn, Saturday, Sept. 7, 2019.

David Domgaard was born in Roosevelt, graduated from high school in Nevada and worked as a wildland firefighter for the Bureau of Land Management.

He was also diabetic, and in 2015 went blind. His insulin was costing him $800 each month, his sister, Tiffany Warren, told a legislative committee recently, and he sold everything he owned to pay for it.

Last month, he told a friend that he was stretching insulin but thought he had it under control. He died the next day. He was just 36.

With insulin costs reaching more than $2,000 a month in some cases, these sorts of stories are horrifyingly common. One recent study found that, nationally, 1-in-4 Americans is rationing insulin.

[Read more: As costs of insulin rise, Utah diabetics are going online to plead for the drug from strangers]

It’s hard to blame anyone who does so. Jon Smith, a radio DJ here in town, told the committee that he pays more than $24,000 each year just for his diabetes medication and has to do side jobs to cover the costs.

Robert Gehrke

Between 2012 and 2016, the cost of insulin nearly doubled in the United States, an egregious indictment of a broken health care system.

When diabetics’ insulin levels get too low, their cells stop absorbing glucose, which builds up in the bloodstream. Their blood turns acidic and they suffer from nausea and vomiting, dizziness and abdominal pain. They can fall into a diabetic coma — and they can die. Even if their levels are stabilized, their kidney, nerves and heart can be badly damaged by recurring spikes in blood sugar.

Michelle Lichtman, a research scientist at the University of Utah who studies diabetes, told lawmakers that there had been a 120% increase in hospitalizations for hyperglycemia, one of the results of a lack of insulin, since 2015.

Rep. Norm Thurston, R-Provo, is trying to take steps this legislative session to control those costs and potentially save lives. His HB207 does a few things: It gives pharmacists some flexibility in adjusting or extending insulin prescriptions so that patients aren’t caught without supplies.

More importantly, it tries to push health insurers to control the price. Under his bill, private insurers would have to offer insulin products at their lowest prescription rate. If they don’t, there would be a hard cap of $30 put on the products, and it would exempt those payments from the requirement that the patient first pay a deductible.

Residents whose employers self-insure — generally the really big employers — would be allowed to buy their insulin through the Public Employee Health Program, the state-run health system, which uses its huge reach to negotiate lower prices for insulin than most can offer.

“Even if you’re with an employer who doesn’t want to play ball the way we think they should, you can still get your insulin at a significant discount from the cash price,” Thurston said. “They’re telling us it would be about a 77% discount from the cash price.”

This is a different approach than many states are taking. Last year, Colorado became the first state to cap the cost of insulin at $100 a month. Illinois followed suit last year and other states, like Florida, Michigan and Kentucky, are considering similar measures.

Thurston said he didn’t want to go that route because it doesn’t actually lower the cost, it just spreads it out among the general population, meaning higher payments for everyone else on the plan.

He also wanted to encourage insurers to be creative about how they tackle the problem.

The reception from insurers and hospitals is surprisingly positive. Many of the big insurers in the state — SelectHealth, Aetna, Regence BlueCross Blue Shield, United HealthCare and the likes — have announced they are changing their pharmacy programs so patients no longer have to pay deductibles and don’t have to pay the retail cost of insulin.

It’s a worthwhile cause and innovative approach to tackling a life-threatening problem. If successful, it could be replicated in other states and potentially at the federal level. If PEHP can get a better deal on insulin with thousands of people, imagine what the U.S. Department of Health and Human Services could negotiate with millions (if Congress were to ever allow HHS to negotiate prices).

Thurston’s bill is still in committee while he works out some details, but it’s a bill that for the sake of thousands of Utahns needs to pass.

Mindie Hooley, who runs Insulin for All, a group designed to help connect Utah diabetics with low-cost insulin, put the consequences of inaction in stark focus for legislators. Last September, Hooley said, she held a vigil for a dozen Utahns who died because they couldn’t afford insulin.

If nothing is done, she said, there will unfortunately be another vigil just like it.