Insulin will be capped in 2023, but most people with diabetes will not benefit

Annemarie Gibson Owen’s son was diagnosed with type 1 diabetes in 2011. Six years later, in 2017, the same diagnosis was made to her other son, Thomas.

The 49-year-old San Diego mother has health insurance. Every month, she says, she pays $400 in premiums for her family. But that doesn’t cover the cost of insulin for her sons, both now teenagers. This medicine costs another $200 out of pocket.

Gibson is among the millions in the United States who will not see relief when the Inflation Reduction Act goes into effect on January 1, capping the monthly out-of-pocket cost of insulin at $35 for seniors receiving medical care. In August, Republicans successfully blocked a provision in a bill that would have capped out-of-pocket drug spending for anyone with private insurance.

“It doesn’t seem fair,” Gibson said of the cost of the drug needed to keep her children alive. “We have no other options. We have no other choice.”

According to the Centers for Disease Control and Prevention, more than half of diabetics in the United States—more than 21 million people—are under 65 years of age. Nearly 16 million people aged 65 and over have diabetes, although not all of them are enrolled in Medicare.

If the cost of a drug becomes unacceptable, some people try to limit their insulin intake—a choice that can result in hospitalization or death. For others, the cost of the drug represents chronic financial pain.

How much does insulin cost?

Determining the cost of a vial of insulin is extremely difficult; what a person will pay depends on a number of factors, including what type of insulin they use, their insurance status, and whether they qualify for a discount from the drug manufacturer.

It is clear that the cost of insulin in the US is much higher than in other countries. The RAND Corporation, a public policy think tank, calculated that in 2018 the average list price for one vial of insulin in the United States was $98.70, 10 times higher than in other OECD countries, Parisian organization. based research group. Even when analysts factored in discounts offered by drug manufacturers, the cost of insulin was still four times higher than in other countries.

According to the American Diabetes Association, people with type 1 diabetes need an average of one to three vials of insulin per month. Patients with type 2 diabetes do not always need to take insulin, but those who do may sometimes need more than people with type 1 diabetes.

A report published in 2020 in JAMA Network Open found that in 2017, the average monthly out-of-pocket cost of insulin for people with a high-deductible insurance plan was $141. High deductible plans usually have lower monthly premiums but require the insured to pay much more out of pocket before coverage kicks in.

According to the Health Care Cost Institute, a nonprofit group that tracks drug prices, more than 50% of insulin users with employer insurance spent an average of more than $35 out of pocket on a 30-day supply of insulin in 2019 and 2020. . About 5% of them spent over $200.

Some people may pay even more.

Dr. Adam Gaffney, a critical care physician for the Cambridge Health Alliance in Massachusetts, said even this year he had patients who spent $1,000 or more on insulin every month.

The Inflation Reduction Act is “useful, but definitely not enough,” Gaffney said. For many people with diabetes, there is no substitute for insulin and they do not have days off from their medication. “In this sense, this is a unique drug, and we must make it available to the public,” he said.

High costs, high risks

The high cost of insulin has forced many people to limit their medication: according to a study published in October in the journal, more than 1 million people in the US either skipped, delayed, or used less insulin than was needed last year to save money. Annals of Internal Medicine.

Rationing can have dire consequences.

Hattie Saltzman, 25, of Kansas City, Missouri, experienced these effects five years ago.

She was enrolled in a plan with a high deductible and paid about $550 a month for the insulin she needed to control her type 1 diabetes. She couldn’t afford it. After months of drug rationing, Saltzman ended up in the emergency room, where doctors told her she was at risk for diabetic ketoacidosis, a life-threatening condition that occurs when too much sugar is left in the blood due to a lack of insulin, she said. .

Saltzman is no longer rationing the drug, and although she now has better health insurance, she said she still pays about $125 for a three-month supply of insulin.

“It’s just really frustrating,” said Saltzman, who advocates for affordable insulin. “It doesn’t make sense that we were this close to getting help and then it was taken away.”

Even people with what is considered good health insurance can face high costs in certain situations.

Chicago resident Anita Brown, 41, has type 1 diabetes and says she pays $60 to $70 for a three-month supply of insulin.

But about three years ago, someone stole her newly replenished supply of insulin from her purse while she was at her bowling league practice.

Brown was initially told at the pharmacy that her insurance would not cover replacements and that she would have to pay more than $1,000 for three bottles.

“I’m running out of one of my bottles and I need this recipe,” she said of her thoughts at the time. “I’m trying to figure out everything I can.”

Eventually, Brown’s insurance allowed her to initiate emergency insurance so she could refill her $60 prescription. But this is an advantage that can only be used once a year.

“I have insurance. I should be okay with it, but it’s still expensive for me,” she said. “What’s going on here?”

The way forward

With Republicans taking control of the House next week, passing a bipartisan drug pricing bill that would cap the cost of insulin for people under 65 could prove difficult, said Juliette Kubansky, deputy director of KFF’s Medicare Policy Program, formerly known as Kaiser. Family fund.

“I don’t think the politicians have come to a conclusion what to do,” she said.

Perhaps states and others should make up for the fact that the Inflation Reduction Act can’t provide for patients who need insulin, said Eric Tichey, head of pharmacy supply solutions at the Mayo Clinic in Rochester, Minnesota.

States may also enact legislation to make it easier to access insulin in emergencies.

In 2020, Minnesota passed the Alec Smith Insulin Affordability Act, which provides for a 30-day emergency supply of insulin for patients for $35. The law is named after a 26-year-old Minnesota man who had no insurance and died after rationing insulin.

Gibson, a mother from San Diego, said she was just lucky that she had insurance and could cover the cost of medicines for her children every month. But she said she was worried about when her children would be adults and no longer be allowed to use her insurance.

“There will be pressure on my children to always have a full-time job that offers employer-sponsored health care,” she said. “It won’t be easy if our kids end up getting out of our politics and looking for work.”

She said she still feels that her family is being taken advantage of. In addition to insulin and insurance premiums, Gibson also has to spend $550 every three months on blood glucose meters and $1,100 on insulin pumps.

“I’m so angry,” she said. “It’s exhausting.”