Insulin: No More Rationing
Nobody with diabetes should have to put their health and safety at risk because they can’t afford insulin. US National Health Survey data shows that many people have to ration. There are steps you can take to access the drug at a lower cost.
Last year, an estimated 1.3 million adults with diabetes in the United States had to ration their insulin in order to save money.
A new study published in the Annals of Internal Medicine analyzed data from the 2021 National Health Interview Survey conducted by the CDC. The survey of 982 insulin users found that over the past year, 16.5% had skipped insulin doses, took less insulin than they needed, or delayed buying insulin, all due to cost.
Rationing insulin can be harmful, and potentially fatal. Having too little insulin in the body can lead to diabetic ketoacidosis (DKA) and a trip to the emergency room. This is especially true for people with type 1 diabetes, all of whom must use insulin and could be at risk for coma and death without it.
Despite this, however, the study found that 18.6% of people with type 1 diabetes rationed their insulin, as well as 15.8% of people with type 2 who use insulin. In addition, rationing insulin was more common among Black Americans – 23.2% reported rationing insulin, compared to 16% of white and Hispanic Americans.
With the percentage of people with diabetes (both type 1 and type 2) growing in the United States each year, there have been many calls to lower the price and expand affordable insurance coverage for insulin. President Biden took a potential step in the right direction by signing the Inflation Reduction Act into law in August 2022. This law will limit the monthly cost of insulin to $35 for people on Medicare starting in January 2023.
However, millions of people with diabetes who are uninsured, underinsured, or who have private insurance, will be left out of this law. This study found that people without insurance were most likely to have rationed insulin (29.2%) followed by people on private insurance (18.8%), compared to those on Medicare (13.5%). While the legislation will make insulin more affordable for many people with diabetes across the United States, this study shows that the most vulnerable groups are still not protected from sky-high prices.
Zoe Witt, an activist and organizer with Mutual Aid Diabetes who has lived with type 1 diabetes for nearly twenty years, has had to ration insulin several times in the past. “Unfortunately, oftentimes the fastest way to get insulin in an emergency is directly from a diabetic you know, who has extra,” she said.
She explained that high insulin costs not only limit access to insulin, but important diabetes management supplies. “I'm on Medicaid right now, but if I start to make too much money for Medicaid, but don't make enough to live and pay for my various disabilities, I'll probably have to give up my pump, to cover insulin and everything else,” she said. “My diabetes specialist has identified that the reason I could never get my A1C below 8 was because I didn't have access to a continuous glucose monitor (CGM) and pump. I've been between 5.8-6.3 since being on a pump and CGM.
Through Mutual Aid Diabetes, Witt helps people navigate the task of getting insulin in an emergency.
“Even if you aren't currently rationing, but you're not sure how you're going to get insulin next time you need it, you are in crisis,” Witt said. “Some states have things like Alec's Law and Kevin's Law, but even looking up the requirements for things like that, when you're rationing, can be hard.”
“Mutual Aid Diabetes (MAD) uses a trauma-informed approach because the last thing we want to do is re-traumatize someone, or recreate the systems that harm the people who come to us for help,” she said. “When you request help from MAD, one of our volunteers, who are familiar with all the fine print, checks to see if you're eligible on your behalf. Generally, the more information people give, the better we can help them, but we let community members tell us what they need.”
If you ever confront rationing your insulin due to cost, several different cost-saving programs may be able to help.
Eli Lilly, Novo Nordisk, and Sanofi, the three major insulin manufacturers in the United States, each offer different patient assistance programs (PAPs). Here is some information about each:
Novo Nordisk: People who need help paying for their medicines can access these programs at www.novocare.com. Several savings card options are available that can limit the monthly cost of insulin to $99.
Sanofi: Commercially insured people are eligible for co-pay assistance programs for Adlyxin, Apidra, Lantus, Soliqua 100/33, and Toujeo. Uninsured people are eligible for the Insulin Valyou Savings Program, which limits the monthly cost of insulin to $35. You may be able to access medications for free through the Sanofi Patient Connection program as well.
Eli Lilly – Through the LillyCares program, you may be eligible to receive a monthly supply of insulin for $35. Anyone who is paying more than $35 per monthly prescription of Lilly insulin can call the Lilly Diabetes Solution Center at (833) 808-1234 or visit insulinaffordability.com for more information.
Here’s more information on how to get insulin at a lower cost: