How to Cope With the High Cost of Insulin

If you are living with diabetes, you are probably feeling the effects of rising insulin prices. Many people with the condition have skipped or rationed their medicine to save money, which can lead to serious health problems.

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“This is an issue that anecdotally had come up many times, both in popular media and Dr. Kasia Lipska’s work as endocrinologist,” said Darby Herkert, a researcher in cellular and developmental biology at Yale University and lead author of a recent study on cost-related insulin underuse. The study was published in JAMA Internal Medicine. Lipska is an assistant professor of medicine at Yale and another author of the study.

In the study, the Yale Diabetes Center surveyed 199 patients with type 1 and type 2 diabetes, asking if they use less insulin than prescribed; try to stretch out insulin; take smaller doses of insulin than prescribed; have stopped using insulin; have not filled an insulin prescription or have not start insulin because of cost. One-quarter of the participants answered yes to at least one question.

Insulin as a diabetes treatment has been around for almost 100 years, yet costs keep rising, and that puts an increasing number of people with low- or middle incomes at risk for skipping and rationing doses.

Between 2012 and 2016, the amount the average patient with type 1 diabetes paid for insulin rose from $2,684 to $5,705, according to an analysis by the Health Care Cost Institute. Overall, people living with diabetes have annual health care costs that are 2.3 times higher than people without diabetes, according to the American Diabetes Association.

“I am not sure why cost has increased so dramatically. Increase in overhead of pharmaceutical companies is the only reason I can think of,” said Veronica Brady, associate professor of endocrinology at the University of Nevada, Reno School of Medicine, and spokesperson for the American Association of Diabetes Educators.

In addition to pharmaceutical companies, generic drug makers, physicians and the Food and Drug Administration all have played a role in insulin cost increases over the years, and Congress plans to investigate the market, according to a report in STAT.

“I suspect, based on conversations, that middle-income patients are hit harder by the ‘donut hole’ in insurance,” said Herkert, referring to Medicare and its limits on prescription drug coverage.

But even middle-income Americans with employer-sponsored insurance are feeling the squeeze. In the Yale study, roughly 32 percent of participants with health coverage from an employer still struggled with insulin affordability. Almost 43 percent of those with incomes over $50,000 also struggled.

Members of the “sandwich generation,” that is, people caring for children and an older parent or other family member, could also have more trouble affording insulin. Many of these caregivers are in their 40s and 50s, and the Yale study found that about 24 percent of respondents between the ages of 44 and 64 misused insulin due to struggling with the cost. Misuse was defined as skipping doses, taking smaller doses or stopping insulin.

Skipping insulin doses can be harmful. In the Yale study, patients who misused insulin had a roughly 43 percent rate of poor glycemic control. Those who didn’t misuse insulin had about a 28 percent rate of poor glycemic control.

“People are placed on diabetes medication if (their bodies) don’t make any insulin (type 1) or don’t reach targeted blood glucose levels (type 2),” Brady says. Inadequate insulin in patients with type 1 diabetes can cause them to go into diabetic shock, leading to hospitalization and sometimes even death. Also, a hospital stay will cost far more than the cost of the skipped insulin.

While less extreme, inadequate insulin in patients with type 2 diabetes still has significant risks. When blood sugar runs higher, these patients can face changes in vision, increased risk of heart problems and peripheral nerve damage. The vision problems can even lead to blindness.

There are other effects, too. Lower blood glucose levels can cause brain fog, making it harder to concentrate at your job. Also, as Brady explains, when blood sugar gets too high, people must avoid strenuous exercise, and a sedentary lifestyle is known to contribute to many other health problems.

Patients struggling to afford insulin should talk to their doctors about the problem, Herkert says. Unfortunately, she says, one-third of patients in the Yale study who had trouble affording medication didn’t discuss it with their doctor, which could be due to feelings of embarrassment or isolation.

However, as she points out, many people in the U.S. are facing the same struggle, and doctors often can help patients find ways to deal with the problem.

Patients should ask their doctors if there is a safe, less expensive alternative to their current prescription. For instance, “NPH” insulin usually costs less than “analog” insulin — although, these two types have different dosing instructions, so it’s important to discuss the options with a physician.

Another avenue for help is through the local chapters of the American Diabetes Association. Reach out to see what programs they offer. The association advocates through its Make Insulin Affordable initiative, which shares resources for patients.

Health insurance plans are another important consideration. When it’s time to pick one at work or through Medicare, people should carefully compare plan costs related to diabetes care.

“I encourage patients to make sure insurance covers insulin and testing supplies,” Brady says. Also, if your insurance plan offers the the option, it’s sometimes less expensive to get a 90-day supply of insulin rather than a 30-day supply.

In addition, prescription prices vary at retail pharmacies, so it’s important to check around. Websites like GoodRx.com or InsideRx.com can help with comparing costs. These sites also offer discount cards, although the discounts can’t be used on top of insurance. But, sometimes the discount card price is less expensive than a copay. It also could cost ess than a copay to buy testing supplies in bulk online.

Brady also suggests checking into coupons from pharmaceutical companies, which are sometimes available to patients with employer-based insurance.