Dawn and Michael Doty of Litchfield are on the fringes of financial insecurity. They hope as they manage the cost of caring for their two diabetic children, Hunter, 20, and Emma, 18, their insulin pumps will not break before their health insurance deductible is reached.
“I’m telling you,” Dawn said. “When our deductible is met, I stockpile. I become a diabetic hoarder. Even if I know we’re not going to use all those syringes, I get (them). That’s when I will get whatever insurance will allow me to get.”
Theirs is a story not uncommon to diabetics who have seen the cost of supplies, especially insulin, skyrocket in recent years.
The story of one such struggle came to light earlier this year as the Minnesota Legislature debated an insulin emergency fund.
Alec Smith, 26, of Minneapolis died in 2018 after he was removed from his mother’s health insurance, could not afford the $1,300 monthly cost of insulin and began rationing. State lawmakers are considering a bill that would provide lifesaving medication in emergency cases such as Smith’s.
It is legislation such as this that the movement Insulin4All is lobbying for.
“The focus is being able to provide affordable and accessible insulin to every person who needs it,” said Nathan Loewy of Winthrop, an advocate for Insulin4All. “It’s taken off … because the United States is the only first world country where insulin prices for one vial are between $300-$350. In virtually every other country, they are one-tenth to one-eighteenth of that price.”
As the cost of insulin and diabetes supplies nearly doubled between 2012 and 2016, some have found it necessary to ration their insulin by taking less than the prescribed amount or skipping doses — a decision that can lead to serious illness and hospitalization, and sometimes even death.
Loewy understands how the rising cost of insulin and supplies can put a financial crunch on people. He, his wife and one of his three children are diabetic. He said before insurance, insulin for his family costs more than $40,000 per year.
“It’s almost $17,000 for just my insulin,” he said. “And if you have 80/20 insurance after deductible, that means you’re still putting out $3,400 per year after you reach your deductible.”
Only three U.S. companies manufacture insulin: Eli Lilly, Sanofi and Novo Nordisk. They hold the patents to the medicine and frequently change the formula in small ways to extend their patents. This effectively prevents competition that would lower insulin prices — and the manufacturer’s profits.
The Loewy and Doty families are not alone. The Centers for Disease Control and Prevention says 30.3 million Americans, 9.4 percent of the population, has diabetes. It was the seventh-leading cause of death in the U.S. in 2015, according to the American Diabetes Association. Additionally, 84.1 million Americans are pre-diabetic, a condition that can lead to type 2 diabetes if untreated, according to the CDC.
Emma Bonniwell, a 21-year-old living in Hutchinson, was diagnosed with type 1 diabetes when she was 13. She said she is fortunate to be covered under her parents’ insurance, so insulin only costs about $12 a month. But it hasn’t always been that way.
“I have been late for utilities and bills because I need to be able to afford my insulin,” she said, “which in turn makes my bills more expensive, which in turn makes it harder to get my insulin. It’s kind of a vicious cycle.”
Sometimes the disease can affect people’s lives beyond finances. Bill Wiltrout moved to Hutchinson with his family back in August so he could start a new career as a Department of Natural Resources conservation officer. Part of the reason for the change was for better health benefits. With his previous insurance, insulin cost about $225 a month. With his new job the cost is about $15 a month.
“There have been times where I’ve gone to the pharmacy, and I’ve gotten my insulin and I just sit there and look at the receipt and I shake my head,” Wiltrout said. “It’s obviously frustrating to see the increase in costs. The other thing that worries me is that it’s genetic. Are my kids going to get it? … I need good health benefits.”
Some have suggested using over-the-counter insulin, which is cheaper, but Loewy, who used over-the-counter insulin for a decade, says that is not an effective solution to rising prices.
“There is a reason it’s sold without a prescription,” he said. “It’s an old and outdated formula of insulin. It is not comparable to anything available today that most diabetics use. Not only would the dosing and amount be different, how it affects you would be different as well.”
The good news is more is beginning to be done. Medica, which provides health coverage to 1.3 million members, recently announced a new program beginning in 2020 that will limit the monthly out-of-pocket bill for a 30-day prescription of insulin to $25.
At the federal level, U.S. Sen. Tina Smith, D-Minnesota, introduced the Emergency Access to Insulin Act for diabetics. The bill would provide federal grants to states to provide emergency access. The funding for those grants could come from a fee assessed to companies that overcharge for insulin. The fee would increase if a company attempted to raise prices to offset the fee, according to Smith.
While there may not be any immediate solutions to rising costs, movements such as Insulin4All and its supporters are continuing to bring awareness to this issue, and gradually, they hope, make life less complicated for people with diabetes.
“It’s not something you can do overnight or in any short length of time,” Loewy said. “It’s something that takes a lot of effort to get prices lowered to something comparable to what people in Canada or Italy pay. Right now the goal is to provide emergency access to somebody who runs out and is counting down the hours to their own death.”