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Millions of people need insulin. Why is it so expensive?

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It was 2004 when Ida Allen was diagnosed with diabetes. The disease runs in her family, from her mother to her husband to all four of her children. Allen thought she was in the clear at the time because she was already 64 and figured she would have gotten it before then.

The diagnosis was difficult, but it was just the start. Allen didn’t have insurance to cover her medication. Doctors started her on oral medication, but she eventually had to move to insulin injections. Worst of all, it was the same year her husband died.

Allen wasn’t working at the time, and it was difficult to manage her diabetes.

“By the grace of God” is how she described making it through that time, getting help from friends and family to afford her medicine.

Here’s where to get help if you can’t afford your insulin

Allen is 79 now and has Medicaid and Medicare, which also helps treat her high blood pressure and high cholesterol. But Allen was far from alone in 2004, and she would be far from alone today.

An analysis by the RAND Corporation found the average list price of insulin per unit in America in 2018 was $98.70. The next highest price was $14.40 in Japan. The gap is even larger when only considering rapid-acting insulin, which makes up about a third of the U.S. market. The study notes it’s difficult to know the final prices patients end up paying at the pharmacy.

But insulin has egalitarian roots.

It was discovered in 1923 by a Canadian scientist named Frederick Banting. He refused to put his name on the patent, saying it was unethical for someone to profit from a discovery that would save lives. Banting’s co-inventors sold the patent to the University of Toronto for $1.

These days, researchers have found as many as 1 in 4 people with diabetes either don’t use enough insulin or skip the dose altogether.

America uses a free-market approach to medicine, which means companies can take advantage of what doctors and researchers consider lackluster regulation. Congress passed a law in 2003 preventing Medicare from negotiating drug prices, and bills to give Medicare that power, or to create a cap on out-of-pocket spending, typically don’t go anywhere.

“This is a pretty big problem,” said Diana Isaacs, an endocrinology clinical pharmacist who works with diabetes patients. She also noted the problem is not unique to insulin when it comes to treating diabetes.

Isaacs, who is also part of the Association of Diabetes Care and Education Specialists, said the goal is to get the patient insurance coverage, but even that isn’t foolproof.

Latosha Rowley, whose 82-year-old mother has diabetes, said insurance has been good about helping her mother get insulin, but her aging mother sometimes forgets to taker her insulin the required four times a day. They’re trying to transition to a device that automatically monitors sugar levels and provides insulin with little or no input from the users or their caregivers. Insurance doesn’t cover that, though.

“I wish there was something, when people get older, to help,” Rowley said. “When she was younger, taking medicine was no problem, but as your mental capacity starts changing, it gets more difficult to remember to check your sugar levels and give yourself an injection.”

Patrice Duckett, co-chair of a neighborhood steering committee for the Diabetes Impact Project Indianapolis Neighborhoods (DIP-IN), said the issue in her northwest side community is less about affordability and more about accessibility.

Similar to the way America approaches poverty, food access and other issues, there are plenty of patchwork programs and resources to help people afford their diabetes medication.

On getinsulin.org, people answer a few questions and get a plan with solutions to fit their circumstances. The DIP-IN project includes community health workers who help people with diabetes get connected to resources. Patient assistance programs like the one at Eli Lilly — one of three insulin manufacturers in the U.S. — allow patients with financial needs to fill their monthly prescription of Lilly insulin for $35.

There is also now over-the-counter insulin, which Isaacs said isn’t as good as the newer insulins, but it is cheaper and you don’t need a prescription. The U.S. Food and Drug Administration approved the first interchangeable insulin to the long-acting insulin glargine, marketed as Lantus. That means pharmacists can substitute the interchangeable insulin without consulting a patient’s physician, the same as they would for other generic drugs.

Telling someone who’s already stressed with life’s challenges to take extra steps to lower the cost of their diabetes medication may be a futile effort in some cases, but Isaacs said it’s worth it.

“If you don’t do that, you could end up paying a lot more than you could have,” she said.

Contact staff writer Tyler Fenwick at 317-762-7853 or tylerf@indyrecorder.com. Follow him on Twitter @Ty_Fenwick.

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