Rationing Insulin? Why You Shouldn’t

As many as 1 in 4 Americans with diabetes are rationing lifesaving insulin because they can't afford it, a Yale study shows. That means people are delaying picking up their insulin prescription or taking lower doses than they needed, researchers found.

But this practice of insulin rationing comes with a considerable health risk.  

Key Takeaways: Insulin Rationing

• Insulin rationing occurs when people with diabetes, due to the high cost of insulin, intentionally take less than prescribed, which can lead to severe, life-threatening complications like diabetic ketoacidosis (DKA), a medical emergency that can result in coma or death.
• If you need help with the cost of insulin, seek assistance, don't ration. Patients struggling with costs should never alter their dosage and instead seek resources like patient assistance programs, prescription discount cards, or discuss alternatives with their doctor.
• DKA is a risk. Rationing insulin significantly increases the risk of diabetic ketoacidosis.

Why Is Insulin Needed?

Insulin is a naturally occurring hormone that shuttles sugars from food into body cells to be used for fuel. When people have diabetes, their bodies either do not produce insulin or cannot properly use it, which causes blood sugar levels to soar.

Type 1 diabetes arises when the immune system mistakenly destroys the pancreatic cells that make insulin. People with type 1 must take insulin every day to survive.

If they underuse their insulin, that can lead to a potentially fatal complication called ketoacidosis, where blood sugar levels spike so much that the blood becomes highly acidic.

Meanwhile, people with type 2 diabetes, the much more common form of the disease, often take insulin as part of their medication regimen to lower their blood sugar.

Complications of uncontrolled blood sugar

Controlling blood sugar is critical for patients with either form of diabetes, to help prevent long-term health complications. Blood glucose levels that remain high for too long can lead to long-term complications such as:

• Heart disease
• Stroke
• Kidney disease
• Nerve damage
• Amputations
• Eye problems, including blindness and glaucoma.

Uncontrolled blood glucose levels also weaken the immune system.

What Is Insulin Rationing?

Insulin rationing is when some people with diabetes who are struggling to pay for medication costs turn to cutting back on their use of insulin as a short-term measure.

"Rationing insulin is dangerous because it leads to poor control of diabetes which can lead to increased complications such as kidney disease, vascular disease, neuropathy," said Franciscan Health nurse practitioner Lori Rose, who practices at Franciscan Physician Network Diabetes & Endocrinology Specialists in Mooresville and Indianapolis. "It may also lead to hospitalization due to life-threatening complications." 

Why Are People Rationing Insulin?

A study, published in the Annals of Internal Medicine, found that insulin rationing was most common among the uninsured, with almost 30% saying they'd either delayed buying insulin or reduced their doses. Next were people with private insurance, 19% of whom said they'd rationed insulin.

Some health plans have such high cost-sharing -- in the form of copayments, high deductibles and similar charges -- that patients end up paying a lot toward their medical care.

Why Is Insulin So Expensive?

People with diabetes account for $1 of every $4 spent on health care in the U.S., according to the American Diabetes Association. Americans with diabetes spend an average of $4,800 each year on care.

Insulin prices have skyrocketed over the past 20 years, and surveys have suggested that many Americans ration the drug to save money. A law capping the cost of insulin at $35 applies only to Medicare patients, not the children and adults under 65 who are not on Medicare. A bipartisan act has been proposed to extend that cap to all people with diabetes.

In 2023, a new federal law limited the amount of money that Medicare patients pay for insulin, capping their monthly copay at $35. However, the Medicare cap leaves out the many Americans with diabetes who are not covered by the program.

What Can Be Done About Insulin Prices?

In the absence of a federal law, some states are taking action to cap insulin payments for people who are not on Medicare. At least 20 states have capped copayments for insulin and diabetes supplies, according to the American Diabetes Association.

Another change is that U.S. pharmacists can automatically substitute a cheaper biosimilar for a more expensive brand-name insulin. A biosimilar is a near copy of an injected biologic medicine that's manufactured inside living cells. The U.S Food and Drug Administration approved an "interchangeable" biosimilar that could save diabetics and health plans millions each year, the Associated Press reported in 2021. The FDA said that the biosimilar Semglee is interchangeable with the widely used fast-acting insulin Lantus, the Associated Press reported. Until that announcement, doctors have had to specifically prescribe a biosimilar or approve substituting it for a more expensive brand-name insulin.

"While there are not really generic insulins that are chemically identical to brand-name insulins at significantly cheaper prices, there are some insulins that have lower price tags," Rose said.

What If You Have Trouble Paying For Insulin?

Rationing insulin can put your health at risk. Let your healthcare provider know you are having trouble paying for your insulin or other supplies needed to manage your diabetes.

"Diabetic patients should discuss their concerns regarding insulin cost with their provider," Rose said. "The treatment plan may be able to be adjusted to include lower-cost products. A lower cost insulin may be able to be used, or the person may qualify for an assistance program from the insulin manufacturer."

The American Diabetes Association has a resource page for people who are needing help paying for their insulin.