The high cost of insulin is a primary concern for patients with diabetes, which has increased dramatically in the past 20 years. And while current changes are lowering the price, at least for some patients, newer drugs are adding to the confusion.
The good news is that help is on the way, including new laws capping costs for seniors and generic insulin that could be available next year.
The bad news. It takes real work to unravel the complexities of costs and get the best possible deal on these life-saving drugs.
“Sometimes it feels like you’re spinning the biggest ball of yarn ever,” says Stephanie Field, director of pharmacy business services at Corewell Health.
That’s why Corewell now has a Medication Care Coordination Team to help patients solve insurance conundrums by doing everything they can to simplify coverage for complex drug regimens.
“We make sure that this is the most cost-effective approach for the patient and that they are getting the right medication that is covered by their insurance,” he said.
Sometimes, this is not possible.
“In those cases, we help with medication assistance, which can be a co-payment card or a grant. There are opportunities for us to help get coverage,” he said.
Some drug companies offer relief.
And companies like GoodRx also help patients find their way to money-saving coupons and drug discounts.
Field says Corewell Health works with patients to help them find out as much as possible before they’re startled by the sticker shock at the pharmacy window.
And it works. Field said the average time from prescription to pharmacy pickup went from seven and a half days to three days.
“And we’ve seen a significant reduction in cost to the patient,” he said.
Understanding cost complexity
It helps to understand how the costs of diabetes have spiraled out of control. Insulin was discovered more than 100 years ago, and it’s important to the 1.9 million people with type 1 diabetes.
Insulin is a hormone that occurs naturally in the body and is secreted by the pancreas. People with type 1 diabetes do not produce it at all.
People with type 2 diabetes make their own insulin, but their bodies don’t use it properly. They can usually manage it with lifestyle changes and oral medications. But in some cases they also need insulin injections.
More than 37 million Americans have diabetes, about 11% of the population, according to the American Diabetes Association, and it’s growing at an epidemic rate.
Approximately 8 million people in the United States rely on insulin.
As that number rises, it puts more pressure on the supply of insulin, a market controlled by the three pharmaceutical giants.
“These three manufacturers produce insulin for the entire world,” said Gregory Daines, DO, an internal medicine physician at Corewell Health Spectrum Medical Group. “Significant investment is required to build manufacturing facilities that can safely make a drug molecule.”
Semglee, a biosimilar form of insulin made by a fourth company, recently hit the market. (Biosimilars are defined as biological formulas that are so similar to the drugs they imitate that there is no clinical difference. Generic drugs, on the other hand, are identical to the brand-name drugs they copy.)
While this has improved access for some patients, many advocates are frustrated by the limited impact.
Field shares the patients’ frustration. While the average out-of-pocket price paid by Corewell Health system patients for their insulin is $20.70, some patients pay $165 depending on their insurance.
“It’s concerning,” he said.
And people with different levels of insurance and education have different degrees of health literacy.
Even for experts like him, navigating that maze is difficult.
“I’ve done this for 13 years and I still struggle with my parents, getting them to make the right choice,” she said.
Some patients face bills as high as $2,100 a month.
“No middle-income person could afford it,” he said. “You must be a millionaire. At some point, you would probably just give up.”
Unfortunately, many people are forced to make unsafe choices.
A recent study found that 17% of insulin users either missed insulin doses, took less insulin than needed, or delayed filling prescriptions due to financial constraints.
And among black Americans, rationalization was even more common, affecting 23%, compared to 16% of white and Hispanic Americans.
New drugs add to the confusion
Insulin is not the only diabetes drug that is prohibitively expensive. Newer type 2 diabetes medications, such as Ozempic, Trulicity, and Mounjaro, are very effective in obesity-related diabetes. But they can cost patients up to $1,000 a month.
And the publicity about those costs, Field said, adds to the perception that all diabetes drugs are so expensive.
“For a lot of people, the nuances get lost and it becomes kind of a convoluted story,” he said.
Innovative legislation recently set the cost of insulin at $35 for Medicare, which covers older Americans.
But that life-saving measure comes at a price. A recent study by the Congressional Budget Office shows that it also increases government spending and increases the cost of insurance premiums.
Taxpayers and consumers also bear those costs.
Michigan is working to keep costs down by manufacturing insulin in the state. It is one of several states calling for an investigation into the pricing policies of Eli Lilly & Co., Sanofi and Novo Nordisk.
The same vial of insulin that costs $98 in the U.S. is available for $12 in Canada, $8 in the U.K. and $7 in the U.S., according to Rand’s analysis.
On average, insulin prices in the US are eight times higher than in 32 high-income countries.
Pharmaceutical companies, however, largely defend the pricing of their products.
“The pharmaceutical industry’s philosophy has long been that they have the right to do this because billions of dollars are spent developing one new drug, and because many new drugs fail,” says Dr. Daines.
Managing the high cost of medicines
Relief comes, eventually. Eli Lilly recently lowered the price of its insulin to $35 for everyone. Civica, a nonprofit organization, plans to introduce three biosimilar insulins starting in early 2024.
Until then, he said, the most important step is to “make sure you understand your insurance benefits.”
It’s important to know which drugs are covered and which aren’t, and how to get the lowest copay possible.
And that means checking in with your insurer every year because plans change often.
Unfortunately, he said, many people could be paying less and don’t know it. And while plans are required to notify patients of the changes, “often the letter comes three months in advance, and the impact isn’t clear until they come to the pharmacy to pay for their drugs.”
It’s also important to ask your provider how the new prescription fits into insurance.