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The price of insulin has increased 1,200% since 1996.

By Zina Kumok
March 19, 2021
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When most people think of managing a chronic condition, they think about doctor's visits, prescription medicine and lifestyle changes. But for many individuals living with diabetes, medical interventions are only part of the struggle—a struggle that is only exacerbated by skyrocketing financial costs.

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The costs associated with diabetes management have been climbing rapidly since the turn of the century; nowadays, many of those living with diabetes have few options to fund their treatment. They're often forced to ration medicine, not eat, even upend their lives—turning down jobs or moving to a state with better coverage, for example—just to afford the basic care they need to survive. 

How the cost of insulin has changed

According to research published by the American Diabetes Association, the average price of insulin almost tripled between 2002 and 2013. In the United States, the cost is often passed onto the consumer directly. A study done by RAND Health Care found that the average manufacturer's price for a unit of insulin in the US was more than 10 times the price in 32 countries.  

Marissa, who's had Type-1 diabetes since she was in elementary school and who has requested to remain anonymous due to concerns about job discrimination, knows all about the baffling costs of insulin in this country. There are three companies that produce the type of insulin she uses in her pump, and those companies have been hiking prices steadily for years—despite making few changes to the overall formula. 

According to The American Journal of Managed Care, when Eli Lilly first produced its Humalog insulin in 1996, a month-supply cost $21. In 2019, the one-month cost was around $275—representing a 1,200% increase. The rate of inflation during that same time period was only 63.67%. 

When the cost of insulin became a national talking point, Marissa said she heard a lot of comments about how you can get insulin for $25 a vial at Walmart. In reality, that kind of insulin is an older model that requires patients to follow a strict eating schedule—or experience large blood sugar fluctuations.  

"That type of insulin is just not conducive to modern living," she said. 

Within the past two years, eight states passed laws that capped the cost of insulin to $100 or less for a month's supply. These states include Colorado, Illinois, Maine, New Mexico, New York, Utah, Washington, and West Virginia. That still leaves most of the country without price caps. 

The complicated world of insurance

When Marissa is on a Medicaid plan, she's only allowed to renew her prescription a day or two before her insulin runs out—and there have been times when renewing it on that timeline was impossible, such as when she had to travel out of state for a funeral. There are no accommodations made for people with diabetes experiencing any sort of hardship or emergency; they have to be tied to the schedule of their insulin prescription, period.

Plus, if Marissa has to switch insurance plans, it can take awhile to get her prescription switched over. In those instances, she has to ration her supply of medication. How do you ration insulin? Simple, says Marissa: Just stop eating.  

"If I don't eat, there's more insulin in my pump for other day-to-day activities," she said. "Instead of eating breakfast, lunch and dinner, I'll drink coffee for breakfast, eat a bar for lunch, and eat dinner." 

For Marissa, rationing while using an insulin pump is less of a life-and-death scenario than rationing while taking insulin shots. "If you do shots, rationing means giving yourself less insulin than you actually need," she said. Patients who ration with insulin shots are the ones who end up dying from related complications more often

When the Covid-19 pandemic hit, Marissa lost her job in New York City and briefly considered moving back in with her parents in Tennessee. Unfortunately, the Medicaid program in Tennessee doesn't cover her diabetes medication as much as her New York medicaid plan does. On Tennessee's Medicaid plan, she would have to pay $750 to $800 out-of-pocket every month for her insulin, pump supplies, test strips and doctor's visits. 

"With my current managed plan, I am allowed to get supplies for my current pump for free," she said. "That just wouldn't be feasible in Tennessee." 

And Marissa's experience is far from unique: Having diabetes means being beholden to the confusing, ever-changing world of health insurance. When Washington, D.C.-based lawyer Laura Marston was diagnosed with type 1 diabetes at age 14, she immediately became aware of the financial implications of the disease and how her ability to get and stay insured would now dictate her life and career.

"From that point forward, my parents' message to me was, 'You have to get a good job, and you have to be insured,'" Marston tells Health.

Before the Affordable Care Act, insurers could kick children off their parent's policies after they turned 18 or when they graduated from college. Marston says one of the reasons she applied to law school was to stay on her parents' insurance. Years later, after losing her job, she was paying $2,880 every single month on premiums and her monthly insulin supply.

"At that point, I was having to sell my belongings," she says. "I borrowed from my parents' retirement account, and I cashed out my 401(k)." Marston explains that her refrigerator is packed with expired vials of insulin that have some remaining medicine, in case she loses her job and can't afford to buy more.

Diabetes controls careers

"I know at any given moment how much insulin I have on hand," she says. The choices she's made aren't too different than those of other individuals with diabetes whom she knows. She said it affects many people's ability to have kids, buy a house or take career risks.

"I know people who weren't ready to get married, but who got married for the health coverage," Marston adds.

Even choosing to become a lawyer was a decision that Marston made largely based on her diabetes. She wanted to work with computers, but that didn't seem like a stable career path when she was growing up (my, how times have changed). Marston knew she needed good insurance in a stable industry, so she chose law.

"Everything in my life is dependent on getting and keeping the best health insurance I can," she said.

As for Marissa, every December she renews her prescription for pump supplies and test strips because she's already met her deductible, even if she doesn't need them right then. If she were to wait until January or later, she would have to meet her deductible before insurance would cover a portion of those items. 

Marissa, like Marston, also has to be selective about the kind of job she chooses; she was offered a full-time position at an art gallery, but turned it down because it didn't come with health insurance. And even when a company does offer health insurance, it doesn't mean someone with diabetes is in the clear. Some insurance companies have a bad reputation when it comes to diabetes coverage in particular; Marissa explains that not all insurance companies will even cover the type of insulin she receives or her specific pump.

And if she were to switch insurance plans in hopes of an easier future? Well, aside from the aforementioned delay in coverage, she may even have to find a new endocrinologist on her new insurance—another hassle in a long list of roadblocks and frustrations that those with diabetes face, simply in order to stay alive.

"Diabetes is my primary concern on where and how I will live," Marissa says. In 2021, individuals living with diabetes are—wrongly—reduced to and dictated by their disease. And that needs to change.