AUSTIN (Nexstar) — So far, Colorado is the only state in the nation to cap insulin co-pay costs at $100 for patients with health insurance, but other states are starting to explore the possibility.

The state plan released by the Texas Diabetes Council outlines it as a priority and it says it’s “a key step to ensuring insulin is more affordable for those who need it.” 

“The increasing price of insulin has caused one in every four patients to ration the medication, which is a lifesaving drug,” the report states. “Insulin prices have tripled in the last 10 years and the cost of newer medications for diabetes is out of reach for many patients. The Texas public has no knowledge about how much manufacturers, wholesalers, pharmacy benefit managers and pharmacies in the supply chain benefit from the sale of insulin.” 

Josh Wagner, 15, was diagnosed when he was 10 years old. (Courtesy: Jenny Wagner)

Families and patient advocates of those who have Type 1 diabetes, also known as juvenile diabetes, say the rising cost of insulin has made it into a life or death issue for a lot of people. 

And it can get dangerous. 

“If you’re taking less than you need, your glucose is going to go up,” Jenny Wagner said. “It becomes this Russian roulette. Wagner’s 15-year-old son was diagnosed when he was 10.  

April McDaniel, whose 12-year-old son also has Type 1 diabetes, says without insurance, her family would have to pay more than $2,000 for a 90-day supply of insulin. 

“You kind of hoard insulin because you’re not really sure – it’s a lifesaving drug and if you don’t have it, if you couldn’t afford it, it would be devastating,” McDaniel said. 

Cody McDaniel, 12, was diagnosed with Type 1 diabetes more than 5 years ago. (Courtesy: April McDaniel)

Susan Kimball has a son who attends college out of state. He was first diagnosed in fifth grade. Kimball and her husband both have independent insurance. 

“We pay so much individually just to have that,” she said. “The deductibles are massive.” 

Her son takes two insulins every month – one long-acting one and a short-acting one. For the long-acting insulin, her co-pay, even with insurance, is hundreds of dollars a month. 

“We’re fortunate that we can cover the costs associated with our children, even as a college freshman,” she said. “When he turns 26, he needs to have his own job and his own means to take care of it. That’s always sort of looming. I think in the background, for myself, what if when he’s 27, because of the pre-existing condition and though he may have a job, it may not cover it?” 

Kimball isn’t alone in her worries. She and McDaniel are friends with other moms of children who have Type 1 diabetes who share similar concerns. Kristine Clark is one of them. Though her co-pay is only $50 and she has insurance coverage, the fear of not having access to insulin doesn’t go away. 

“You get the max that you can on your prescription and you keep it in your fridge for fear of running out,” says Clark, who has a daughter with Type 1 diabetes. “Then, as they get older, the fear of our children being able to afford it for themselves.” 

Skyler Clark, 9, was diagnosed with Type 1 diabetes when she was six. (Courtesy: Kristine Clark)

According to the non-profits T1 International and the Health Care Cost Institute, spending by patients with Type 1 diabetes nearly doubled from 2012 to 2016, increasing from $2,900 to $5,700.  

“I’ve run into friends of friends who aren’t covered by insurance and they struggle, especially towards the end of the month when they don’t have insulin and we’ll chip in to give them an extra bottle,” Joel Barnett, advocacy team chair of the Texas chapter of the Juvenile Diabetes Research Foundation, said. 

Barnett says insurance and pharmaceutical benefits managers play a role in insulin pricing, too. And statistics show Texas leads the nation in the number of people without health insurance. 

“Those without insurance, costs can range up to $600 a month,” Barnett said. “When you’re trying to pay for your other bills, your housing, your food, $600 is a lot of money to require of anybody to have to take medicine for a life or death issue.” 

Other states with lawmakers looking into insulin co-pay caps include Illinois and Virginia.