Grace Cochran
- American's spending on insulin increased to $22.3 billion in 2022 from $8 billion in 2012.
- Grace Cochran said the costs of other vital diabetes treatments, like pumps, are still expensive.
- Cochran said TikTok users help each other find affordable solutions when possible.
Last year, when Grace Cochran's father retired, she lost her parent-supported health insurance and got her own. But even with insurance, she said the costs of managing her type 1 diabetes are high.
American's spending on insulin has tripled in the past decade, rising from $8 billion in 2012 to $22.3 billion in 2022, according to the American Diabetes Association. Factors that contribute to the higher costs include limited flexibility for the federal government to negotiate drug prices, along with a lack of pricing transparency in talks with pharmacy benefit managers, according to the National Institutes of Health. The drug is cheap to produce but is often sold for a significant profit by manufacturers.
President Joe Biden tried to address the issue in August 2022 with the Inflation Reduction Act, which capped insulin costs at $35 a month for all seniors on Medicare. In the past year, pressure from the White House and the public pushed major insulin manufacturers like Eli Lilly and Sanofi to also adopt the cap for all patients with private insurance and uninsured patients who enroll in manufacturer assistance programs.
However, others, like 25-year-old Cochran, are still seeking some relief for the costs of insulin and other necessary diabetes tools, like insulin pumps and continuous glucose monitors.
"That insulin price cap was huge, but it's not the only thing for so many diabetics that is expensive," said Cochran, a Charlotte, North Carolina-based nurse who was diagnosed when she was 7.
Beyond insulin, Cochran needs to afford medical supplies
Nearly 9 million people across the country rely on insulin to live, with as many as one in four being unable to pay for the medicine they need.
While the costs of insulin have skyrocketed, and the direct medical costs of treating diabetes have also increased by about 7% since 2017. This includes the costs of prescriptions, medical visits, and medical devices.
"They are necessary for quality of life and not finding yourself in the hospital every few weeks," Cochran said.
Every day, Cochran doses insulin through her Omnipod, a small insulin pump attached to her arm that she must replace every three days. She also tracks blood sugar changes with a continuous glucose monitor.
She can stay alive with just her insulin — which costs her about $25 a month — but she said her diabetes will not be well controlled if she can't also get her insulin pump and continuous glucose monitor at reasonable prices.
For example, a glucose monitor might wake her up with an alert if her blood sugar drops to a dangerous level in her sleep.
"I'm not rationing things in a serious way, but I am kind of being more mindful of the supplies I'm using and trying to make things last longer," said Cochran, who frequently posts TikToks about her experience navigating the healthcare system as a diabetic. "It's how I push off spending all that money all at once."
Earlier this month, Cochran posted a TikTok explaining that a 3-month supply of her insulin pumps would cost her $1,800, even after insurance. Cochran ended up borrowing Omnipods from another TikTok user and plans to replace them when she receives her next prescription.
She said her community sometimes has to rely on each other to fill gaps in supply access, and Cochran has had situations where she temporarily switched to manual insulin injection when insulin pump supplies weren't available.
Cochran's expenses can be unpredictable. Her continuous glucose monitor doesn't cost her anything right now, but in the past, she paid $30 a month with insurance. A blood sugar meter is also around $30, and test strips are almost $1 each. If Cochran's glucose monitor isn't working, she can use five to 10 test strips per day, and she estimates the device she uses to prick her finger is $12.
To make matters worse, Cochran's doctors often prescribe insulin that her insurance doesn't cover.
Different people may have increased sensitivity to different types and brands of insulin, Cochran said, but insurance companies sometimes only offer one option for coverage. She had been using the insulin brand Novolog for years before her new insurance confirmed it only covers Humalog. If she wants to switch back Novolog, she has to get special authorization — and she hopes the price won't go up.
"After living with an illness for 18 years, they're all of the sudden going to tell me what I can and can't use, which is just mind-boggling to me," Cochran said.
Cochran said she often feels like the "middleman" between her healthcare providers and her insurance company. She makes between 15 and 20 calls a month to her doctor, pharmacist, and insurance company about when her supplies will be available, where she can pick them up, and whether her healthcare plan will cover the costs.
She's still in the first few months of using her own insurance plan but expects to pay up to $3,000 before reaching her deductible.
Insulin cap signals progress, but diabetics still need cost relief
The $35 insulin cap is a step in the right direction for diabetes care, but only a patchwork solution, said Campbell Hutton, the vice president of regulatory and health policy at JDRF, a nonprofit research and advocacy organization for type 1 diabetes. Individuals should be able to choose the supplies that work best for them at a consistently affordable cost, she said.
There is not yet data to show the full impact of the insulin price cap, but 2023 reports by the US Department of Health and Human Services suggest early beneficiaries of the Inflation Reduction Act could save over $500 a year on insulin.
Meanwhile, a bipartisan bill that's in Congress would limit patient out-of-pocket costs for insulin, regardless of their insulin manufacturer, and make it easier for new generic and biosimilar drugs to enter the market. The bill was introduced to the Senate last April and continues to gain cosponsors.
Are you a diabetic who has faced barriers to affording insulin? Have you experienced challenges in accessing medical care or prescription drugs? Reach out to allisonkelly@insider.com.