Insulin Rationing: What It Is and Why It's So Dangerous

What skimping or skipping insulin does to your body if you have type 1 or type 2 diabetes—and why it can have deadly consequences. The heartbreak of this growing problem.

Worried African American Man in a CityWhat skimping or skipping insulin does to your body and why there can be deadly consequences. (Photo: Unsplash, whoislimo)

As insulin prices soar, rationing this life-saving drug therapy has become the new normal for more and more people with Type 1 and Type 2 diabetes—a practice that can be fatal. Rationing or running out of insulin is the suspected cause of several recent deaths in the US, including 22-year-old Antavia Worsham of Cincinnati and 26-year-old Alec Smith of Minneapolis.

“I see more of my patients are rationing now than at any time in my 14 years working with people with diabetes. It’s heart-breaking,” says certified diabetes educator Veronica J Brady PhD, MSN, CDE,  assistant professor of internal medicine at the University of Nevada, Reno, School of Medicine and an advanced practice registered nurse in endocrinology. “This incudes older people on Medicare who are in the “doughnut hole” when drugs cost more, older adults who don’t want to spend their life savings on insulin, young people with Type 1 who are uninsured or under-insured, and working people with health insurance whose insulin is not covered or who have to pay a high price on their plan. Insulin can cost $300 to $700 a month in these cases. It’s a very sad state of affairs.”  

Inside Your Body When You Don’t Use Enough Insulin

Rationing insulin can quickly become deadly. When your body doesn’t have enough insulin in your bloodstream to coax blood sugar (glucose) into cells, blood sugar levels soar and your body turns to another source of fuel for energy. It begins to break down fat. This releases compounds called ketones into your bloodstream. “When ketones build up in the blood, they make it more acidic. They are a warning sign that your diabetes is out of control or that you are getting sick,” according to the American Diabetes Associatio .

This is diabetic ketoacidosis (DKA). Your body also produces more glucagon, adrenaline, cortisol and growth hormone as your body attempts to regulate itself.  DKA can cause severe dehydration and leads to kidney damage, brain swelling and brain damage, stroke, heart rhythm problems, fluid build-up in your lungs and respiratory failure. You can lose consciousness, go into a coma and die in a short time, Brady cautions.

Changes that lead to DKA begin within 12 hours of your last insulin dose and you can develop DKA within 24 hours. Hospitals treat DKA with intravenous insulin and fluids. “If no one finds you, you can die quickly,” Brady says. “Even if they do and you receive treatment in the hospital, you may not fully recover. It’s not worth it. And it doesn’t have to happen. It’s important for people considering rationing to know that they have options.” (Related information: Free Insulin: Strategies for Getting Insulin When You Can't Afford It

Don’t fall for the myth that you can tough it out or that you’ll know you’re developing DKA in time to reverse it yourself or get help, Brady says. “Some people have no symptoms,” she says.


A Growing Threat

Plenty of people who use insulin are rationing, according to recent studies. In a 2018 Yale University survey of 199 women and men with Type 1 or Type 2 diabetes who use insulin, 25 percent told researchers they were rationing. They were using less insulin than their prescribed dose, had skipped filling a prescription or tried to “stretch out” their insulin by taking it less often or never filling the prescription when their doctor first recommended insulin therapy.

The survey was presented at the American Diabetes Association’s 2018 scientific sessions in June 2018.  People who “underused” their insulin were three times more likely to have poor glycemic control—an A1c reading of 9% or higher—than those who used it as directed.  An informal survey by the organization Beyond Type 1 of more than 500 people with Type 1 diabetes found that 30% were rationing insulin due to high cost.  Another survey, found that 45% were cutting back.

Meanwhile, DKA is increasingly common. The number of people with Type 1 and Type 2 diabetes treated in a hospital for DKA rose 55% between 2009 and 2014, according to a 2018 report from the Centers for Disease Control and Prevention. 

The CDC study does not attribute the increase to the cost of insulin—though it mentions that cost of treatment should get a closer look especially in people younger than age 45, who were 27 times more likely than older adults to land in the hospital with DKA. A 2011 Emory University study of 164 people hospitalized for diabetic ketoacidosis, 68% had stopped using insulin—one in three of those couldn’t afford it or were trying to stretch their supply to last longer.

Brady says some of her patients feel embarrassed or ashamed that they can’t pay for their medical care. “If you are running out, call your doctor,” she says. “Many practices give out samples to help people get through a difficult stretch, as you work out a way to make it more affordable. This is a medication you need to stay alive. It’s not your fault it’s become so expensive. There are resources and strategies that can help.”

Updated on: January 17, 2019
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Free Insulin: Strategies for Getting It When You Can't Afford Your Prescription