Insulin rationing due to cost in the United States is common even among people with diabetes who have private health insurance, new data show.
The findings from the 2021 National Health Interview Survey (NHIS) suggest that about one in six people with insulin-treated diabetes in the US practice insulin rationing — skipping doses, taking less insulin than needed, or delaying the purchase of insulin — due to the price.
Not surprisingly, those without insurance had the highest rationing rate, at nearly a third. However, those with private insurance also had higher rates, at nearly one in five, than the overall diabetes population. And those with public insurance — Medicare and Medicaid — had lower rates.
The finding regarding privately insured individuals was "somewhat surprising," lead author Adam Gaffney, MD, told Medscape Medical News. But he noted that the finding likely reflects issues such as co-pays and deductibles, along with other barriers patients experience within the private health insurance system.
The authors point out that the $35 co-pay cap on insulin included in the Inflation Reduction Act of 2022 might improve insulin access for Medicare beneficiaries but a similar cap for privately insured people was removed from the bill. Moreover, co-pay caps don't help people who are uninsured.
And, although some states have also passed insulin co-pay caps that apply to privately insured people, "even a monthly cost of $35 can be a lot of money for people with low incomes. That isn't negligible. It's important to keep that in mind," said Gaffney, a pulmonary and critical care physician at Harvard Medical School, Boston, and Cambridge Health Alliance, Massachusetts.
"Insulin rationing is frequently harmful and sometimes deadly. In the ICU, I have cared for patients who have life-threatening complications of diabetes because they couldn't afford this life-saving drug. Universal access to insulin, without cost barriers, is urgently needed," said Gaffney in a Public Citizen statement.
Senior author Steffie Woolhandler, MD, agrees. "Drug companies have ramped up prices on insulin year after year, even for products that remain completely unchanged," she noted.
"Drug firms are making vast profits at the expense of the health, and even the lives, of patients," noted Woolhandler, who is a distinguished professor at the Hunter College, City University of New York, a lecturer in medicine at Harvard, and a research associate at Public Citizen.
Uninsured, Privately Insured, and Younger People More Likely to Ration
Gaffney and colleagues' findings were published online October 17 in Annals of Internal Medicine.
The study is the first to examine insulin rationing across the United States among people with all diabetes types treated with insulin using the nationally representative NHIS data.
The results are consistent with those of previous studies, which have found similar rates of insulin rationing at a single US institution and internationally among just those with type 1 diabetes, Gaffney noted.
In 2021, questions about insulin rationing were added to the NHIS for the first time.
The sample included 982 insulin users with diabetes, representing about 1.4 million US adults with type 1 diabetes, 5.8 million with type 2 diabetes, and 0.4 million with other/unknown types.
Overall, 16.5% of participants — 1.3 million nationwide — reported skipping or reducing insulin doses or delaying the purchase of it in the past year. Delaying purchase was the most common type of rationing, reported by 14.2%, while taking less than needed was the most common practice among those with type 1 diabetes (16.5%).
Age made a difference, with 11.2% of adults aged 65 or older versus 20.4% of younger people reporting rationing. And by income level, even among those at the top level examined — 400% or higher of the federal poverty line — 10.8% reported rationing.
"The high-income group is not necessarily rich. Many would be considered middle-income," Gaffney pointed out.
By race, 23.2% of Black participants reported rationing compared with 16.0% of White and Hispanic individuals.
People without insurance had the highest rationing rate (29.2%), followed by those with private insurance (18.8%), other coverage (16.1%), Medicare (13.5%), and Medicaid (11.6%).
"It's a Complicated System"
Gaffney noted that even when the patient has private insurance, it's challenging for the clinician to know in advance whether there are formulary restrictions on what type of insulin can be prescribed or what the patient's co-pay or deductible will be.
"Often the prescription gets written without clear knowledge of coverage beforehand...Coverage differs from patient to patient, from insurance to insurance. It's a complicated system."
He added, though, that some electronic health records (EHRs) incorporate this information. "Currently, some EHRs give real-time feedback. I see no reason why, for all the money we plug into these EHRs, there couldn't be real-time feedback for every patient so you know what the co-pay is and whether it's covered at the time you're prescribing it. To me that's a very straightforward technological fix that we could achieve. We have the information, but it's hard to act on it."
But beyond the EHR, "there are also problems when the patient's insurance changes or their network changes, and what insulin is covered changes. And they don't necessarily get that new prescription in time. And suddenly they have a gap. Gaps can be dangerous."
What's more, Gaffney noted: "The study raises concerning questions about what happens when the public health emergency ends and millions of people with Medicaid lose their coverage. Where are they going to get insulin? That's another population we have to be worried about."
All of this puts clinicians in a difficult spot, he said.
"They want the best for their patients but they're working in a system that's not letting them focus on practicing medicine and instead is forcing them to think about these economic issues that are in large part out of their control."
Gaffney is a member of Physicians for a National Health Program, which advocates for a single-payer health system in the United States.
Ann Intern Med. Published online October 17, 2022. Abstract
Miriam E. Tucker is a freelance journalist based in the Washington, DC, area. She is a regular contributor to Medscape, with other work appearing in The Washington Post, NPR's Shots blog, and Diabetes Forecast magazine. She is on Twitter: @MiriamETucker.
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Cite this: Insulin Rationing Common, 'Surprising' Even Among Privately Insured - Medscape - Oct 17, 2022.