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 San Diego mother, 49, 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 drug still costs $200 out of pocket.
Gibson is among millions of people in the United States who will see no relief when the Cut Inflation Act takes effect Jan. 1, capping the monthly cost of insulin at $35 for seniors on Medicare. In August, Republicans blocked a provision of the bill that would have capped the 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 United States – 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, though not all of them are on Medicare.
If the cost of the drug becomes unsustainable, some people try to ration their insulin, a choice that can lead to hospitalization or death. For others, the cost of the drug carries its own chronic financial pain.
How much does insulin cost?
Determining the cost of a vial of insulin is extremely difficult; what an individual will pay depends on a number of factors, including the type of insulin they use, their insurance status, and whether they qualify for a drug manufacturer rebate.
It is clear that the cost of insulin in the United States 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 United States was $98.70, up to 10 times higher than the other countries of the Organization for Economic Co-operation and Development, in Paris. 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.
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 take insulin, but those who do may sometimes need more than people with type 1 diabetes.
A 2020 report in JAMA Network Open found that in 2017, the average monthly insulin cost for people on high-deductible insurance plans was $141. High-deductible plans typically have lower monthly premiums, but require the insured to pay significantly 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 more than $35 on average for a 30-day supply of insulin. days in 2019 and 2020. . About 5% of them spent more than $200.
Some people may pay even more.
Dr. Adam Gaffney, a critical care physician at the Cambridge Health Alliance in Massachusetts, said even this year he’s had patients who spent $1,000 or more each month on insulin.
The Inflation Reduction Act is “helpful, but it’s certainly not enough,” Gaffney said. For many people with diabetes, there is no substitute for insulin and there are no days off to take the medication. “It’s a unique drug in that sense, and we should make it universally available,” he said.
High costs, high risks
The high cost of insulin has forced many people to ration the drugs: according to a study published in October in the journal Annals of Internal Medicine.
Rationing can have disastrous consequences.
Hattie Salzman, 25, of Kansas City, Missouri, suffered these consequences five years ago.
She was enrolled in a high-deductible plan and was paying about $550 a month for the insulin she needed to control her type 1 diabetes. She couldn’t afford it. After months of rationing her medication, she said, Salzman ended up in the emergency room where doctors told her she was at risk of developing diabetic ketoacidosis, a life-threatening condition that occurs when too much sugar remains. in the blood due to a lack of insulin. .
Salzman no longer rations the drug, and although she now has better health care coverage, she said she still pays around $125 for a three-month supply of insulin.
“It’s really frustrating,” said Salzman, who advocates for affordable insulin. “It makes no sense that we were so close to getting help and then it was taken away from us.”
Even people with 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 newly filled supply of insulin from her purse while she was training with her bowling league.
At the pharmacy, Brown was first told that her insurance would not cover a replacement and that she would have to pay over $1,000 for three bottles.
“I’ve run out of one of my bottles and need that prescription,” she said of her thought at the time. “I try to understand everything that is possible.”
In the end, Brown’s insurance allowed her to purchase emergency coverage, so she could renew her prescription for $60. But this is a perk that can only be used once a year.
“I have insurance. I’m supposed to be ok with that, but it’s still expensive for me,” she said. “What’s going on here?”
The way to go
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 could prove difficult, said Juliette Cubanski, Deputy Director of the Health Insurance Policy Program at KFF, formerly known as Kaiser. Family foundation.
“I don’t think the decision makers have figured out what to do,” she said.
It may be up to states and other entities to make up for what the Cut Inflation Act fails to deliver to patients who need insulin, said Eric Tichy, president of the Inflation Solutions Division. pharmacy supply for 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 after a 26-year-old Minnesota man who was uninsured and died after rationing his insulin.
Gibson, the mother from San Diego, said she feels lucky to have insurance and to be able to cover the cost of her children’s medication each month. But she said she worries about when her children become adults and are no longer allowed on her insurance.
“There will be pressure for my children to still have full-time jobs that provide employer-sponsored health care,” she said. “It won’t be easy if our children find themselves out of our politics and looking for jobs.”
She said she still felt her family was exploited. In addition to insulin and insurance premiums, Gibson also has to spend $550 every three months on glucometers and $1,100 on insulin pumps.
“I’m so angry,” she said. “It’s exhausting.”
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