Insulin: 1.3 million Americans with diabetes cut their supplies last year, study finds


In December, Stephanie Arceneaux of Utah has been living with type 1 diabetes for 30 years. He was diagnosed at age 6.

“I’ve seen a lot of changes in how diabetes is cared for,” she said. “I always thought things would get better as I got older, and unfortunately it hasn’t.”

Arceneaux’s husband and young son also have type 1 diabetes. All three depend on insulin to survive.

“When I heard the stories about insulin rationing for people with diabetes, my initial thought was horror, because I know what it’s like to not have enough insulin in your body. At the same time, I also had this thought: ‘I’m so lucky I never have to do this,'” he said

“But the more I thought about it, the more I realized that I spent my whole adult life doing it. I’ve been lucky that it didn’t have any serious consequences that I’m aware of, but I made choices in my life to have the insulin I needed to live.’

Arceneaux isn’t alone: ​​According to research published Monday in the journal Annals of Internal Medicine, one million people with diabetes in the U.S. rationed insulin in the past year.

“The main takeaway is that 1.3 million people rationed insulin in the United States, one of the wealthiest countries in the world,” said Adam Gaffney, MD, lead author of the study and a pulmonologist and critical care physician at Harvard Medical School and Cambridge Health. Alliance, he told CNN. “This is a life-saving drug. Insulin rationing can have life-threatening consequences.’

Gaffney and her co-authors looked at the US Centers for Disease Control and Prevention’s 2021 National Health Interview Survey, which included 982 people with diabetes who use insulin. They saw how much insulin they ration, how much it costs.

People were considered rationing if they responded positively to survey questions about skipping insulin doses, taking less than needed, or delaying insulin purchases.

“What we found was that nationwide, 1.3 million Americans with diabetes are rationing insulin each year, which is about 16.5 percent of people who use insulin,” Gaffney said.

Some groups said they did it more often, such as those with type 1 diabetes; those who do not have health insurance are rationing most of the time.

Adults under 65 shared more often than those over 65, and Gaffney noted that almost all of the elderly and less rationed were covered by Medicare.

Two other groups more likely to dispense insulin than their peers were middle-income people and black Americans.

“We found high rates of rationing of a life-saving drug, which should be of real concern to everyone,” Gaffney said.

“We need urgent policy change to ensure everyone has access to this critical medication without cost barriers,” he said. “And we have to do that today.”

Gaffney and his co-authors said in the study that several factors underlie their findings, including that insulin prices in the US are much higher than elsewhere and that pharmaceutical companies have increased the price “year after year, even across products. That hasn’t changed.”

“By limiting insulin copayments to $35 per month under Medicare, the Inflation Reduction Act of 2022 may improve access to insulin for seniors who were heavily rationed in our study,” they wrote. “However, the similar cap on private insurance was removed from the bill, and cap limits do not help the uninsured. Further reforms can improve access to insulin for all Americans.”

According to the CDC, more than 37 million adults in the US have diabetes, but 1 in 5 don’t know it. It is the seventh leading cause of death in the country and the leading cause of kidney failure, lower limb amputations and blindness in adults.

The number of adults diagnosed with diabetes has more than doubled in the past year, the CDC said.

Type 1 diabetes is thought to be caused by an autoimmune reaction that prevents the body from producing insulin. According to the CDC, between 5% and 10% of people with diabetes have this type.

Type 2 diabetes means that the body doesn’t use insulin well and can’t keep blood sugar at normal levels. It develops over many years and is usually diagnosed in adults.

While there is no known way to prevent type 1 diabetes, type 2 can be prevented or delayed with healthy lifestyle changes, including losing weight and being active.

Arceneaux’s choices to ration herself included not eating (insulin is needed to cover the carbohydrates a person eats) and rationing things like the test strips needed to test her blood sugar, meaning she didn’t know how much insulin she needed. give yourself

She also rationed the other care she needed, she said, and spent a lot of time deciding which medical care was most important to her. He would go to his doctor for insulin prescriptions, but he wouldn’t do the other things someone with diabetes should do, like getting annual eye exams to check for complications like retinopathy.

The cost of insulin plays “a big part” in his decisions, he said.

“If you don’t have money to buy, you don’t have money to buy,” he said. “So what I found myself doing was doing everything I could, limiting everything I could, so I could buy my insulin, have it available.”

When she moved out on her own, she said, she quickly ran into trouble: she could afford food or insulin, but not both. A friend bought food to help him.

“I remember saying to him, ‘It’s hard now. I’m young. I’ve gone on my own, but I know it’s going to get better, you know, in five or 10 years, things will get better,'” she said. “And here I am. When I was 20 it was. I’m 43 now, almost 44, and it’s worse now. The cost has gone up.”

She now has insurance through her husband’s employer, but “the cost of the premiums is so high that it leaves us very little to pay for everything we need.” They often have to rely on insulin provided by other members of the local diabetes community, he said.

The new study’s findings are “so important,” said Dr. Kasia Lipska, an associate professor of medicine at the Yale School of Medicine who sees patients at the Yale Diabetes Center.

“The findings are really concerning in terms of access to insulin among Americans,” said Lipska, who was not involved in the study.

“We have a serious problem. There are a lot of people with diabetes who are rationing insulin, and there are disparities in access by age, race, income and insurance status,” he said. “I think this study shows the persistent problems of insulin access in our country.”

The findings didn’t surprise him, he said, but instead back up what he sees in clinical practice. A single diabetes center study found high rates of insulin rationing.

“We see people who come into the hospital because they have high blood sugar, and then when we ask what happened, they don’t have insurance or they can’t take insulin because of inadequate insurance.” said Lipska. “In the outpatient clinic, there is no clinic where we do not talk about the cost of insulin and figure out how to get the patient the insulin he needs without breaking the budget. They are like daily conversations at the Yale Diabetes Center.

Insulin is “like oxygen” for people with type 1 diabetes, he said, and those who go without it can become very ill within hours or days and end up in the hospital with ketoacidosis, a potentially life-threatening complication. It can also be fatal.

People with type 2 diabetes who do not make adequate insulin can have high blood sugar levels, which can put them at risk for complications such as heart disease, blindness, and kidney failure.

“Diabetes is even more expensive now than it was in my 20s,” Arceneaux said. “I know that studies have done that one in four people with diabetes dispense insulin, but I think it’s a lot more than that. We may not realize that we are doing it.

“We’re doing what we need to survive, and that means getting the insulin we need,” he said. “So we’re rationing not only our insulin, but other things in our lives for this.”

Arceneaux, who leads the Utah chapter of the nonprofit T1 International, said she hears about rationing all the time.

T1 International is run by people with type 1 diabetes who support local communities by providing them with the insulin and diabetes supplies they need.

“We deserve the same quality of life that everyone else deserves, and we shouldn’t have to sacrifice so much of our lives to stay alive. That’s what many of us with diabetes are doing: every day we’re making sacrifices that others don’t make, that others don’t realize,” said Arceneaux.

“I think this is unacceptable, and it must be changed. And now it has to change. We are tired of waiting,” he said. “People with diabetes are tired of waiting. We need a real price cap on insulin, and that has to happen so that we have everything we need to live today.’