It was a year ago this month when Haven Hepner, 10, was flown by medevac from her home in East Wenatchee to Seattle Children’s hospital.
After a case of COVID-19, she had a headache and was very lethargic. When the doctor measured her blood sugar, it was nearly off the charts. She had diabetic ketoacidosis, a life-threatening condition caused by a shortage of insulin in the body, her father Matthew Hepner said.
Haven was diagnosed with Type 1 diabetes and now must receive an insulin injection every time she eats.
“Some things just don’t go away,” Hepner told a state legislative committee last week. “When your 10-year-old girl is strapped to a gurney with her little arms full of IVs, scared out of her mind, being medevaced to Children’s and she looks you straight in the eye and says, ‘Daddy, am I going to die?’ — that doesn’t go away.”
Hepner, an East Wenatchee City Council member, has testified twice in Olympia in the last week on behalf of two different pieces of legislation, each intended to lower the cost of insulin.
“The issue, the coverage of insulin,” Hepner said, “that can go away and it should go away.”
When three University of Toronto researchers discovered insulin a century ago, they sold the patent for $1 each, aiming to ensure the lifesaving medication would be broadly available.
It hasn’t worked out that way.
Insulin costs have risen higher and higher in recent years. A standard vial of insulin costs about $99 in the U.S., according to a 2020 federal study. It costs, on average, about $9 in 32 other industrialized nations. People with Type 1 diabetes usually require at least two to three vials of insulin per month.
A 2022 study of Medicare spending by the Kaiser Family Foundation found that out-of-pocket insulin costs quadrupled from 2007 to 2020, even as the number of people needing insulin grew at a much slower rate.
As a push by national Democrats to cap the cost of insulin faltered last year, more and more states have begun to take action, trying to limit how much insurers can force patients to pay out of pocket for the medication.
Last year, the Washington Legislature, with big bipartisan majorities, passed a bill capping the cost of insulin at $35 a month for people with certain health insurance plans.
But the price cap, which went into effect Jan. 1, only lasts for one year, so now lawmakers are pushing to — again — limit the costs of the lifesaving medication (Senate Bill 5729).
“We had counted on the federal government to enact a $35 cap in their negotiations last year,” said Sen. Karen Keiser, D-Des Moines, the lead sponsor. “I was sort of taken aback to have to redo this bill, because we really thought there was momentum to do this nationally and we thought it would get done.”
Nationally, Democrats pushed to cap the cost of insulin as part of the Inflation Reduction Act, their broad climate and health care legislation that passed in August. But most Senate Republicans opposed the price cap, and forced it to be dropped from the legislation. Ultimately, the bill only limited insulin costs for those on Medicare.
Last year, when President Joe Biden spoke at Green River College in Auburn, he was introduced by Juliana Graceffo, a Sammamish high school senior with Type 1 diabetes.
Graceffo talked about how her dosage routine had changed from a dozen finger pricks and multiple injections a day to a glucose monitor and pump that continuously measure and administer insulin. She explained how she has seen the insulin that the pump sends out skyrocket from $40 a vial to about $300 a vial.
“We have better ways to dose and distribute the insulin, but we need the insulin itself,” she said. “We have seen nothing but increase after increase in the costs of insulin.”
A 2020 study, in the Journal of the American Medical Association, found list prices for insulin increased 262% from 2007 to 2018, while list prices for all branded drugs increased at a slower rate, 159%.
Biden hit the issue again during his State of the Union address last week.
“It costs drug companies just $10 a vial to make, but Big Pharma has been unfairly charging people hundreds of dollars — and making record profits,” Biden said. “Let’s finish the job this time. Let’s cap the cost of insulin at $35 a month for every American who needs it.”
Federal inaction has led to a push at the state level. Colorado, in 2019, capped out-of-pocket insulin costs at $100 per month, the first state do so. Since then, nearly half the states — 22, plus Washington, D.C. — have passed laws capping insulin costs, according to the American Diabetes Association.
State laws, however, often leave out certain insurance plans offered by large employers.
Nationwide, more than 37 million people, more than 10% of the population, have diabetes, according to the American Diabetes Association. The vast majority of those people have Type 2 diabetes, which most often occurs in adults and can be brought on by diet and exercise issues.
Nearly 2 million people in the U.S. have Type 1 diabetes, caused by an autoimmune reaction in which the body stops producing insulin.
Early research into the omicron variant of the coronavirus that causes COVID shows that it can increase the risk of diabetes.
“It is a disease many people know nothing about until it becomes every waking moment of their lives like it has with our family,” said state Rep. Jacquelin Maycumber, R-Republic, whose son has Type 1 diabetes. “I have an app on my phone that wakes me up in the middle of the night to make sure my son does not pass away.”
Maycumber is the lead sponsor of a bill (House Bill 1725) that would have the state buy insulin in bulk, so it could get a discount, and then distribute it to people with diabetes under age 21.
The state Health Care Authority would be in charge of distribution and billing health carriers. The Legislature, in 2021, passed a similar bill to purchase and distribute naloxone, which reverses the effects of opioid overdoses.
State Rep. Marcus Riccelli, D-Spokane, chair of the House Health Care & Wellness Committee, called the proposal a “work in progress” as he voted for it in committee, saying its practicality was still being worked out.
The state also has a Total Cost of Insulin Work Group, with health care, pharmacy and insurance representatives, which is supposed to, later this year, present a plan to lower insulin costs.
One proposal that could come from the work group is a state-led emergency supply program that could have pharmacies dispense at least a 30-day supply of insulin for people in dire need. Several other states, including Maine, Massachusetts, Minnesota and Utah, have such programs.
Studies have shown that anywhere from 15% to 25% of people with diabetes report rationing insulin — that is, using less than what might be advisable because of cost.
“It’s quite common; especially over the past years, it’s been exacerbated,” said Madison Johnson, director of the nonprofit Type 1 United, and chapter leader of advocacy group Washington #Insulin4All. “You’re not taking the insulin that you need to process the food that you’re eating, so you’ll skimp on a dose or you’ll take less insulin just because of the cost.”
That can lead to immediate and dire short-term health problems, as well as health complications later in life.
“Rationing can also lead to death, that’s the harsh reality of it,” Johnson said. “You’re making a decision between buying groceries, paying rent or buying insulin.”
