Sunday, 26 May 2019

As insulin prices rise, politicians attempt to take action, but for some families — it’s too late – UI The Daily Iowan

Jesse Lutgen’s favorite pro-football team was the Green Bay Packers. They didn’t play in the 2018 Super Bowl, but he watched the Eagles clinch their first Super Bowl victory with his aunt on the last night of his life.

His mother, Janelle Lutgen of Bernard, Iowa, said through tears that her 32-year-old son Jesse, an avid football and baseball fan, could be described as being the best friend anyone could ask for.

Janelle Lutgen sits for a portrait at her home on Feb. 24, 2019. Lutgen’s son Jesse died after his financial situation forced him to ration insulin.


Jesse died after rationing his insulin to treat Type 1 diabetes, a lifelong condition requiring injected insulin for the body to process sugar. He lost his job in the winter of 2017 and with that, lost his health benefits. He could no longer afford to buy insulin and died three months later.

Approximately 30 million Americans are living with Type 1 or Type 2 diabetes, and 6 million Americans use some form of insulin. In Iowa, 7.6 percent of adults have Type 1 or Type 2 diabetes.

Many families such as the Lutgens have been unable to receive adequate medical care because of the rising cost of insulin. The mean price of insulin has jumped 200 percent from 2002 to 2013, according to a report from the American Medical Association.

Checkout this interactive video that showcases the surge in insulin prices over the years:

Averaged across types of insulin, the price of a milliliter of insulin in 2002 was $4.34. In 2013, that price increased to $12.92.

Some brands of insulin hiked prices at an even faster pace. Humulin, an insulin sold by company Eli Lilly, is one of six brand-name drugs that jumped at least 500 percent from 2006 to 2015.

Lutgen said her son was diagnosed at the age of 12, after he was med-flown from their small town to Iowa City after having flu-like symptoms for about a week.

“[Jesse] handled it pretty well. He didn’t wallow or pity or anything — that was just something that he had to do,” Lutgen said. “He was pretty easygoing.”

The family lives in northeastern Iowa in a town with a population of 117 people. The closest hospital is 17 miles away, in Dubuque. Lutgen said paying for her son’s insulin was never a problem until he was no longer covered under her health insurance.

The empty bottles of insulin she found in Jesse’s home after he died were from a friend who had extra, Lutgen said. Under federal law, it is illegal to sell or share prescription drugs.

A road in rural Jackson County.

“Who knows how much time it added to his life?” Lutgen said. “[Giving him the drug without the prescription] is illegal, but when you’re saving lives, who cares about whether it’s legal or not?”

Many patients, like Jesse, resort to rationing because they simply don’t have the money to keep up with regular dosing. When Type 1 diabetics don’t get the amount of insulin they need, they develop diabetic ketoacidosis, a condition in which the blood becomes acidic and the cells dehydrate. If untreated, it can lead to diabetic coma or death. 

Jesse Luntgen’s ashes sit in an urn on a shelf in the home of his mother Janelle alongside photographs and other items including a Chicago Cubs’ world series has and a Make America Great Again hat the home of his mother Janelle. Janelle Luntgen serves as the chair of the Republican party chair in Jackson county and says she believes that insulin prices are not a partisan issue.

Lutgen, who also serves as the Jackson County Republican Party chair, said anytime she has the opportunity to share her and her son’s story, she seizes it. She said she wants to do more with her retirement than just be retired — she’ will continue to advocate for lower insulin prices.