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

SALT LAKE CITY, Utah – 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 pocket books.

They’re anywhere from between $300 and $500 just for this one box of insulin,” says 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,” says Kamdin.

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

“He makes good money and we still struggle with it,” Brandie Smith says. “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 says.

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 says. “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.

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 do to get by.

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

It’s similar to giving blood, and not easy. They use the money they make to buy 9-year-old Devon’s insulin. “I will pass out after donating, and there have been a few times during. It’s hard on your body,” she said.

Williams pays $300-$500 for insulin a month, even with insurance. She says they are stretched financially.

“Very stretched. Even with donating, that is only covering the insulin and we are not paying our medical bills,” she says.

Going without insulin would put Devon at risk of permanent damage to blood vessels, nerves and organs.

“I usually get shaky and dizzy when I’m low,” he says.

So he and his parents keep playing along, a dangerous game.

As do Kamdin’s parents.

“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 says.

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.”