Annemarie Gibson’s son, Owen, was diagnosed with type 1 diabetes in 2011. Six years later, in 2017, her other son, Thomas, received the same diagnosis.
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 children, both now in their teens. That medication costs another $200 out of pocket for her.
gibson You are among the millions of Americans who will not see relief when the Cut Inflation Act goes into effect on January 1, capping the monthly cost of insulin to $35 for seniors with Medicare. In August, Republicans successfully blocked a provision in the bill that would have capped the out-of-pocket cost of the drug for everyone 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.”
More than half of diabetics in the US, more than 21 million people, are under the age of 65, according to the Centers for Disease Control and Prevention. Nearly 16 million people age 65 and older have diabetes, although not all of them have Medicare.
If the cost of the drug becomes untenable, some people try to ration their insulin, an option that can lead to hospitalization or death. For others, the cost of the drug exerts its own chronic financial pain.
How much does insulin cost?
Pinpointing the cost of a vial of insulin is extremely difficult; What a person will pay depends on a number of factors, including the type of insulin they are using, insurance status, and whether they are eligible for reimbursement 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, estimated that in 2018, the average list price of a vial of insulin in the US was $98.70, up to 10 times that of other countries in the Organization for Economic Co-operation and Development, a research group based in Paris. Even when the analysts took into account rebates offered by drug manufacturers, the cost of insulin was still four times higher than in other countries.
People with type 1 diabetes need, on average, one to three vials of insulin per month, according to the American Diabetes Association. Patients with type 2 diabetes do not always need to inject insulin, but those who do can sometimes need more than people with type 1 diabetes.
A report published in 2020 in JAMA Open Network 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 generally have lower monthly premiums, but require the insured to pay significantly more out-of-pocket before coverage kicks in.
More than 50% of insulin users with employer insurance spent more than $35 out-of-pocket on average for a 30-day supply of insulin in 2019 and 2020, according to to the Institute for the Cost of Health Care, a nonprofit group that tracks drug prices. About 5% of them spent more than $200.
Some people can pay even more.
Dr. Adam Gaffney, a critical care physician at Cambridge Health Alliance in Massachusetts, said that even this year, he has had patients spend $1,000 or more each month on insulin.
The Inflation Reduction Act is “helpful, but it’s definitely not enough,” Gaffney said. For many people with diabetes, there is no substitute for insulin and no days off to take the medication. “It’s a unique drug in that sense, and we should make it universally available,” she said.
High costs, high risks
The high cost of insulin has forced many people to ration the drug: More than 1 million people in the US skipped, delayed, or used less insulin than they needed last year to save money, according to a published study. in October in the magazine. Annals of Internal Medicine.
Rationing can have dire consequences.
Hattie Salzman, 25, of Kansas City, Missouri, experienced those consequences five years ago.
I was enrolled in a high deductible plan and she was paying about $550 a month for the insulin she needs to keep her type 1 diabetes under control. She couldn’t afford it. After months of rationing his medication, he said, Salzman ended up in the emergency room where doctors told him he was at risk of diabetic ketoacidosis, a life-threatening condition that occurs when too much sugar remains in the bloodstream due to a lack of insulin. .
Salzman no longer rations the drug, and although he now has better health care coverage, he said he still pays about $125 for a three-month supply of insulin.
“It’s really frustrating,” said Salzman, who advocates for affordable insulin. “It doesn’t make sense that we were so close to getting help and then it was taken away.”
Even people with what is considered good health insurance coverage can face high costs in certain situations.
Chicago resident Anita Brown, 41, has type 1 diabetes and said she pays about $60 to $70 for a three-month supply of insulin.
But about three years ago, someone stole her freshly refilled supply of insulin from her bag while she was at practice with her bowling league.
At the pharmacy, Brown was initially told that his insurance would not cover a replacement and that he would have to pay more than $1,000 for three vials.
“I’m running out of one of my bottles and I need this recipe,” he said of his mindset at the time. “I’m trying to find out as much as possible.”
In the end, Brown’s insurance allowed her to initiate emergency coverage, so she could refill her prescription for $60. But it is a benefit that can only be used once a year.
“I have insurance. I’m supposed to be okay with it, but it’s still expensive for me,” she said. What’s going on here?
the road ahead
With Republicans taking control of the House next week, passing bipartisan drug pricing legislation that would cap the cost of insulin for people under 65 may prove difficult, said Juliette Cubanski, deputy director of the Medicare policy program. at KFF, formerly known as Kaiser. Family Foundation.
“I don’t think policymakers have come to know what to do,” he said.
It may be up to states and other entities to make up what the Reducing Inflation Act doesn’t provide to patients who need insulin, said Eric Tichy, president of the pharmaceutical supply solutions division at the Mayo Clinic in Rochester, Minnesota.
States can also enact laws that would make insulin more affordable in emergencies.
In 2020, Minnesota passed the Alec Smith Insulin Affordability Act, which provides a 30-day emergency supply of insulin to patients for $35. The legislation is named for a 26-year-old Minnesota man who was uninsured and died after rationing his insulin.
Gibson, the San Diego mom, said she feels lucky to have insurance and be able to cover the cost of her children’s medications each month. But she said she worries when her children become adults and are no longer allowed on her insurance.
“There will be pressure for my children to always have full-time jobs that offer employer-sponsored health care,” she said. “It won’t be easy if our children end up off our policy and are looking for work.”
She said she still feels like her family is being taken advantage of. In addition to insulin and insurance premiums, Gibson must also spend $550 every three months on glucose monitors and $1,100 on insulin pumps.
“I’m so angry,” she said. “It is exhausting.”