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Utah families with diabetic kids are going to extremes to afford insulin

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SALT LAKE CITY — More than 30 million Americans have diabetes. Doctors report 7.5 million of them rely on insulin to stay alive, but the price of this life-saving drug has skyrocketed.

Some Utah families are going to extremes to afford it.

Though testing her blood to manage type 1 diabetes doesn’t hurt, what does cause pain for 11-year-old Kamdin Smith’s parents is the hit to their pocketbooks.

"They’re anywhere from between $300 and $500 just for this one box of insulin,” said Brandie Smith, Kamdin’s mother. “One of these will last us only half a week, maybe.”

“When I hear that it’s so expensive, I kind of feel like I might die,” said Kamdin.

Both of her parents work full time and have health insurance.

“He makes good money and we still struggle with it,” Brandie Smith said. “They have to have it to live so they know you’re going to pay the cost.”

Erin Fox, the senior director of drug information at University of Utah Health, blames a broken system.

“It’s horrific, I think. This is a product that really hasn’t changed in more than 20 years. The company hasn’t done anything to innovate or make it better. It’s the same stuff,” she said.


It’s horrific, I think. This is a product that really hasn’t changed in more than 20 years. The company hasn’t done anything to innovate or make it better. It’s the same stuff.

–Erin Fox, University of Utah Health


According to the American Diabetes Association, the average price of insulin nearly tripled between 2002 and 2013, making diabetes the most expensive chronic illness in the U.S.

The same brands are hundreds of dollars cheaper in Canada.

Fox says in 1996, a vial of insulin cost around $25. Now that same amount is $300.

There aren’t good, affordable generic options.

“It’s called ever-greening the patent,” Fox said. “The company will make a tiny change, just enough so that if a generic company is working on a substitute, it won’t be equitable to that same product in the eyes of the FDA.”

There are multiple lawsuits, including a class-action against drug manufacturers Eli Lilly and Novo Nordisk, alleging the companies hiked the prices of insulin simultaneously.

Devon Garrison, age 9, tests his blood to stay on top of his Type 1 Diabetes. His mother, Tristeena Williams, donates plasma twice a week to pay for his insulin. (Family photo)
Devon Garrison, age 9, tests his blood to stay on top of his Type 1 Diabetes. His mother, Tristeena Williams, donates plasma twice a week to pay for his insulin. (Family photo)

The American Diabetes Associates just launched a #MakeInsulinAffordable campaign.

Lawmakers are calling for Congressional hearings, and there’s a grass-roots initiative to provide insulin to the needy.

Parents like Tristeena Williams and her husband do what they have to do to get by.

“We both donate plasma twice a week,” she said.

“She’s a growing girl, and it’s hard when she asks, ‘Mom, can I have a snack?’ We have to say, ‘Maybe you should wait so you don’t have to take insulin,’” Brandie Smith said.

A dangerous game.

Two major pharmaceutical companies that make insulin — Eli Lilly and Novo Nordisk — declined our requests for interviews.

Eli Lilly sent this statement: “Our reimbursement system in the U.S. works for many people, but it leaves some – particularly people with high deductible plans or without insurance at all – without good options. We’re committed to continuing to partner with others in the health care industry to find answers.”

Photos

Heather Simonsen

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