Nearly 1 in 5 US Adults With Diabetes Ration Insulin—Here's Why That's Dangerous

• As many as 1.3 million Americans may have rationed insulin in the past year to save money, new research shows.
• Insulin is an injectable medication used to regulate blood sugar in people with type 1 and type 2 diabetes.
• Rationing insulin—by delaying filling prescriptions or not taking the prescribed dosage—can have life-threatening consequences.

Increasingly high drug prices force Americans to stretch insulin—and go without.

Public health experts have recognized for years that people with diabetes who live in the United States often struggle to access the life-saving drugs they need. This includes insulin, an injectable medication used to regulate blood sugar in people with type 1 and type 2 diabetes. 

Now, a new study published in Annals of internal Medicine estimated that as many as 1.3 million Americans—nearly 1 in 5 of those living with diabetes—may have rationed insulin in the past year, either through delaying getting a prescription filled or taking less insulin than needed. 

“At the root of the problem is that insulin is too expensive,” Laura Marie Nally, MD, a pediatric endocrinologist at Yale Medicine, who also has type 1 diabetes, told Health. “What’s worse is that we know that insulin only costs a few dollars to produce, and that pharmaceutical companies have been inappropriately raising the price and profiting for years because people depend on this medication to survive and do not have access to affordable alternatives.”

A 2018 study published in BMJ Global Health found that nearly half of Americans living with diabetes lack reliable access to insulin. Those authors also noted that just three companies produce 96% of the world’s insulin. 

“Many people do not understand how dangerous rationing insulin can be for someone with insulin-dependent diabetes,” said Dr. Nally, who was not involved in either study, noting that going just a few days without insulin can put someone with type 1 diabetes in the hospital.

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Risks Associated With Rationing Insulin

In the new study, researchers analyzed data from the 2021 National Health Interview Survey (NHIS), which is collected by the Centers for Disease Control and Prevention (CDC) and includes interviews with tens of thousands of Americans about different health topics. 

The team pulled responses from 982 adults who used insulin, which was a representative sample of the more than 7 million adults living in the US who use insulin.

They found that insulin rationing was most common among Black Americans—just over 23%—compared to about 16% for white and Hispanic Americans. Insulin rationing was also about twice as common among younger adults compared to people over age 65. However, diabetes is also more prevalent in people over age 65, meaning even a lower percentage of rationing translates into a substantial number of individual people affected.

The researchers found insulin rationing was also more common among people with type 1 diabetes, which is more serious than type 2 diabetes, according to Steffie Woolhandler, MD, MPH, a distinguished professor in the School of Urban Public Health at Hunter College in New York, who co-authored the new research.

“If people with type 1 diabetes skip insulin doses, they can quickly slip into a coma and die,” Dr. Woolhandler told Health.

Over time, skipping insulin can cause organ damage and even failure in people with type 2 diabetes, shortening their lifespan, added Dr. Woolhandler, emphasizing that not taking insulin is dangerous for anyone who is prescribed the medication.

Skipping or not taking enough insulin causes hyperglycemia, or high blood sugar, that can quickly make an insulin-dependent person dehydrated, said Dr. Nally. Over time, consistently high blood sugars can cause blindness, kidney failure, nerve damage, can require amputations, and cause a life-threatening condition called hyperglycemic hyperosmolar state.

Ultimately, insulin is a necessity for people with diabetes. “Doctors only prescribe insulin to those who need it," said Dr. Nally. "And insulin is usually used as a last resort when we have already tried other medications to manage diabetes that have been unsuccessful.”

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Better Access to Vital Medications Is Needed

Despite policy aimed at reducing the cost of insulin, Americans are still forced to cope with out-of-pocket costs that people living in Canada and Western Europe, which have standards of health care comparable to the US, do not.

The Inflation Reduction Act, which was signed into law by President Joe Biden in August and will go into effect on January 1, 2023, will put a $35 cap on the monthly cost of insulin for seniors on Medicare.

However, the bill does not protect the millions of Americans who have private health insurance or who are uninsured. In their analysis of NHIS data, Dr. Woolhandler and her team found that insulin rationing was highest among these two groups and lowest among those covered by Medicare or Medicaid. 

“It’s great for seniors, but there is a huge problem with younger people as well with people who don’t have Medicare they are forced to ration insulin which is a drug they need to live,” said Dr. Woolhandler. 

Private insurance is becoming increasingly more difficult to afford and insulin is also often not the only drug people with diabetes need, according to Dr. Nally.

“We need regulations in place to limit the cost of medications, especially those vital to life, like insulin," said Dr. Nally. "We need a simplified system that allows anyone with diabetes to be able to walk into a pharmacy and get insulin when they need it, regardless of income or insurance status."