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Utah lawmakers tackle skyrocketing insulin costs

Nancy Domgaard holds a photo of her deceased son, Casey, during a House Health and Human Services Committee hearing on HB207, which aims to make insulin more affordable, in the Senate Building at the Capitol complex in Salt Lake City on Thursday, Feb. 6, 2020. Casey Domgaard’s sister, Tiffany Warren, and her children — Dakota, Allyssa and Daxdan — are sitting next to her.
Nancy Domgaard holds a photo of her deceased son, Casey, during a House Health and Human Services Committee hearing on HB207, which aims to make insulin more affordable, in the Senate Building at the Capitol complex in Salt Lake City on Thursday, Feb. 6, 2020. Casey Domgaard’s sister, Tiffany Warren, and her children — Dakota, Allyssa and Daxdan — are sitting next to her.
Jeffrey D. Allred, Deseret News

SALT LAKE CITY — Dozens of Utahns testified before members of the Health and Human Services Committee on Thursday, pleading for help with the rising cost of life-saving insulin.

Rep. Norm Thurston, R-Provo, and others at the Legislature are attempting to tackle the issue that has plagued many Utahns, as insulin-dependent Type 1 diabetes is common.

“When patients can’t afford their insulin, they start doing things that aren’t good for their health,” Thurston said.

A vial of insulin, which cost around $20 in 2002, has increased to nearly $350 today. Many patients ration their supply, going without for as long as they can to stretch the medication. But that can lead to serious complications, and even death.

“Prescription drugs don’t work if people can’t afford to buy them,” said Mindie Hooley, Utah Insulin for All chapter leader and mother of a Type 1 diabetic son. Medical obligations cost her family their home, their cars and pushed them into debt.

Thurston’s bill, HB207, which was held in the committee for further clarification, would give Utah pharmacists the authority to extend an existing insulin prescription up to 90 days, switch patients to a similar product depending on their plan’s coverage, and dispense up to 90 days worth of insulin if a patient should need it.

The Utah County lawmaker, who has tackled drug transparency issues for years, said a number of insurance companies have said they are in the process of changing pharmaceutical coverage to make things more affordable, but nothing has happened yet.

Thurston said plans that don’t willingly change things themselves might see a $30 per month cap on insulin charges under the bill, should it pass.

Another option, he said, would be for the Public Employee Health Plan to issue pharmacy cards to anyone needing insulin, which would help negotiate a lower price.

“We want to empower plans to fight back against manufacturing price increases,” Thurston said.

Michelle Litchman, a nurse practitioner and researcher at the University of Utah, told lawmakers that 1 in 4 people with Type 1 diabetes in the United States ration their insulin because of the cost. Since 2015, she said, hospital visits for hyperglycemia and diabetic ketoacidosis have increased 120% — another consequence Litchman believes is due to inaccessible insulin.

“There is not a system in the body that is not affected by a lack of insulin,” said Maryann Martindale, director at the Utah Academy of Family Physicians. “This is a crucial life-saving drug ... it is not something to be trifled with.”

Diana Thomas, the mother of a Type 1 diabetic, told lawmakers she is “afraid for the day” when her daughter has to figure out how to afford the disease on her own.

Ashley Lamar, 28, told the committee “I’ve taken out loans to pay bills, lost jobs, and I want to be pregnant, but knowing that will cost even more makes me sick.”

Rep. Norm Thurston, R-Provo, listens as Stephanie Arceneaux, who is diabetic, speaks in support of HB207, which aims to make insulin more affordable, during a hearing before the House Health and Human Services Committee in the Senate Building at the Capitol complex in Salt Lake City on Thursday, Feb. 6, 2020.
Rep. Norm Thurston, R-Provo, listens as Stephanie Arceneaux, who is diabetic, speaks in support of HB207, which aims to make insulin more affordable, during a hearing before the House Health and Human Services Committee in the Senate Building at the Capitol complex in Salt Lake City on Thursday, Feb. 6, 2020.
Jeffrey D. Allred, Deseret News

The cost of insulin has skyrocketed in the U.S. because the Food and Drug Administration limits the number of companies allowed to market it in the country, and those companies can charge what they want, said Rep. Ray Ward, R-Bountiful, who is also a physician. He said the FDA needs to change things in order to make a difference downstream.

Rep. Brad Daw, R-Orem, co-chairman of the committee, said the bill needs to be better so it can pass the larger voting bodies.

“We have heard you,” he told the many constituents present to testify. “We understand the issue and this is a big issue.”

He vowed the committee will address Thurston’s bill again.