Diabetic Alaskans want government accountability as insulin prices skyrocket

Isabella Surles (left) and John Dennis are Type 1 diabetics fed up with high insulin prices in...
Isabella Surles (left) and John Dennis are Type 1 diabetics fed up with high insulin prices in Alaska. (KTUU)
Published: Jan. 10, 2019 at 12:37 AM AKST
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Skyrocketing insulin prices are a national problem, and diabetic Alaskans are doing what they can to cope with those high prices while asking state and federal governments for more accountability.

In the words of Alaska State Senator Cathy Giessel, a registered nurse, the cost of insulin nationally is killing people. People who can’t afford their medication either take smaller doses or skip it altogether.

From commuting to Canada for affordable insulin, to missing out on sleepovers for fear of missing a dosage, here's what some Alaskans living with the disease have to say:

Isabella Surles is a Type 1 diabetic. Growing up, she couldn’t stay over at friends' houses because she didn’t have a surefire way of monitoring her blood glucose levels. "I have kids that come up to me, asking me if I'm like a robot, or what's on my arm?" Surles said.

That seemingly futuristic thing on her arm enchanting her peers is a continuous glucose monitor. It checks her blood sugar every five minutes, sending that information to her cellphone, and straight to mom, Bre Keller, through an app.

"It's a fabulous invention. There's no wondering," Keller said, remembering all those years she spent worried about her daughter when this technology wasn’t readily available.

The blood glucose monitor is only one piece of a giant system keeping young Isabella alive. She stood over a counter full of multiple supplies, only a month’s worth of medication. She said it can be hard just keeping track of everything. "It's overwhelming,” she said. “Because you have to know where everything is, you have to be prepared."

Isabella utilizes a complex, life-saving system that does not come cheap. "I think last year, the total amount that was billed to our insurance company was $22,000," Keller said. "There's a lot of people who can't afford that."

The American Diabetes Association calls diabetes a national epidemic, and it's expensive. Total direct medical expenses for Alaskans with diabetes were estimated at $420 million in 2017 -- 2.3 times higher than those without, according to ADA.

John Dennis is also a Type 1 diabetic, diagnosed in 1997. He’s had to make difficult choices in order to afford medication. "I have to live, I have to eat, and those are the choices that I've had to make for myself," he said while behind the wheel of his blue Toyota Cruiser.

Dennis says his copay for insulin is through the roof. "A three-month supply for nine vials, the last time I went through my insurance, was something like $720," he said.

He said he’s had to look elsewhere to afford the medication he needs to live; in some cases, driving 700 miles across the border into Canada, and down to Whitehorse, where he said he can buy a vile of insulin for $28. He wonders why such a disparity exists between American and Canadian insulin prices.

"I have a hard time understanding something that I have to have to live can be priced so exorbitantly," Dennis said.

Sen. Geissel agreed with Dennis in an emailed statement to Channel 2, saying, “Insulin is used by millions of Americans. It's off-patent, which means it should be very low priced. All the research is done, production issues are solved. Short-acting insulin was priced at $21 a dose in 1996. Today it costs $275. Why?"

Fewer and fewer patients are able to afford the treatment. According to the ADA, the average price of insulin nearly tripled between 2002 and 2013.

Dennis feels for those diabetic patients who can’t afford treatment; who skim on their doses in an attempt to save money.

"It saddens me seeing people having to make choices in their lives and choosing not to take the medication that they need, and ultimately dying because of it," Dennis said.

Sen. Geissel said insurance separates patients from the actual costs, buffering drug manufacturers from the public outcry. She said the federal government needs to require more transparency in the healthcare industry.

“The current federal administration is aware of the issues and is pursuing solutions,” she said. “The Governor and his team, along with the Legislature, is also aware and have been making the small steps that we can over the last few years.”

“Patients have a big voice in this,” she said. “Patients’ voices can help us in the battle to make these life-sustaining drugs affordable and accessible.”

At just 12 years old, Isabella Surles is already speaking with Senator Sullivan about this very issue. She said she intends to keep pressuring federal lawmakers to hear her voice from across the nation.