EAU CLAIRE — Sarah Beer faces the prospect of potentially being forced to pay $1,600 a month for insulin and diabetes supplies beginning May 31.
That’s the date when the 27-year-old Eau Claire woman, who was diagnosed with Type 1 diabetes at age 5, is scheduled to lose her BadgerCare health insurance that covers the cost of her life-saving medications.
“It’s a sword hanging over my head constantly,” Beer said after sharing the story of her struggle to afford insulin with a panel gathered Tuesday at UW-Eau Claire to discuss insulin safety net programs.
The group, which included the Wisconsin and Minnesota insurance commissioners and several other health and government officials, extensively discussed the possibility of passing a bill in Wisconsin that would be similar to the Alec Smith Insulin Affordability Act that was implemented in Minnesota in 2020.
That law contained an emergency component allowing eligible individuals in urgent need of insulin to get a 30-day supply up to once a year for a $35 co-pay and and a long-term component enabling patients to pay no more than $50 a month for a continuing supply of insulin.
The program helped more than 1,100 Minnesota residents access more than $6 million worth of insulin in 2021, said Libby Caulum, a spokeswoman for MNsure, the state’s health insurance marketplace.
Nicole Smith-Holt, the mother of the Minnesota man the law was named after, attended Tuesday’s meeting virtually, opening the discussion with the heartbreaking story of how Alec died after trying to ration his insulin because of its high cost.
Alec was 24 when he was diagnosed “out of the blue” with Type 1 diabetes, meaning his body could not produce insulin, but the family was able to pay the price tag of up to $300 a month for insulin because he was still covered under his mother’s health insurance policy, Smith-Holt said.
After he aged out of his mother’s policy at 26, Alec, who worked for an employer that didn’t provide health insurance, found the $450 monthly premium available to him to be unaffordable on his restaurant manager salary. Instead, he elected to use that money to buy insulin.
On June 22, 2017, he went to a pharmacy to buy insulin and was asked to pay $1,300.
“He did not have $1,300 in his bank account, so he left that pharmacy without insulin,” Smith-Holt said, speculating that her son hoped to stretch the little insulin he had left until his next paycheck arrived. “His body was found three days before that pay day. He didn’t succeed at playing Russian roulette with his insulin.”
Alec died in 2017 of ketoacidosis at age 26, and the Minnesota law came about in large part because of Smith-Holt’s advocacy and determination to prevent other families from enduring similar tragedies.
In Wisconsin, Gov. Tony Evers introduced a similar insulin safety net program in his 2021-23 budget proposal, but the Republican-controlled Joint Finance Committee removed it. The concept was later reintroduced as part of a “Less for Rx” package of bills that failed to advance in the Legislature before it adjourned for the year in March.
Wisconsin Insurance Commissioner Nathan Houdek urged advocates to keep pushing for an insulin safety net measure, which he called a “no-brainer.”
“There’s no reason it should cost this much,” Houdek said. “I think in the last 20 years the most common insulin prices have gone up 1,400%. That’s inexcusable.”
The high price of insulin is something that shouldn’t be ignored because it affects so many people, said Theresa Dachel, a nurse practitioner and assistant professor in the College of Nursing at UW-Eau Claire.
“Unfortunately, people are rationing it,” Dachel said. “They are trying to decide do they eat, do they have a place to sleep or do they take their insulin, and no one should have to make that kind of a decision.”
Jeanette Olsen, an associate professor in the College of Nursing and a free clinic volunteer, was one of several panel participants to point out that it costs much more to pay for patients to get emergency care for diabetes health crises than to just buy the insulin they need to manage their lifelong disease.
Roughly 37.3 million people in the U.S., or about one in 10, have diabetes, according to the Centers for Disease Control and Prevention.
While most people’s bodies naturally produce insulin — a hormone that helps convert sugars from food into energy — patients with diabetes either don’t produce insulin or don’t use it well, causing blood sugar levels to rise. The CDC says diabetes is the nation’s seventh-leading cause of death.
Beer said passing a program similar to Minnesota’s in Wisconsin would be an “incredible relief.”
“Having that in place would give me peace of mind, knowing that I wouldn’t have to beg my family for the $1,600 a month to pay for my diabetes supplies,” Beer said.
Similar to Alec, Beer recalled living in fear for years of turning 26 and being kicked off her parents’ insurance.
“There are no words to express how terrified I was,” she said. “I was terrified I’d become another statistic for another headline: ‘Diabetic dies after having to ration insulin.’ “
Still in graduate school when she turned 26, Beer qualified for BadgerCare coverage — a development she says “quite literally saved my life.” Now working 40 hours a week at two part-time jobs, she is only still eligible for BadgerCare because of a pandemic-related extension of benefits scheduled to expire at the end of May.
Beer said living with diabetes is filled with challenges — she estimates she has pricked her finger 40,000 to 80,000 times to check her blood sugar over the past 22 years — but anxiety over the cost of medication is the worst.
“Insulin is not a choice and it should not be a privilege,” she said.
The U.S. Department of Health and Human Services reports that Americans pay about 10 times what people in other developed countries pay for insulin.
At the federal level, the House of Representatives approved a bill March 31 by a vote of 232-193, with 12 Republicans joining all Democrats in support, that would cap cost-sharing for a month’s supply of insulin starting in 2023 at $35 or 25% of an insurance plan’s negotiated price — whichever is lower.
Most Republicans opposed the measure, with some labeling it “government priced fixing” or a “socialist plan” that could lead to higher premiums for customers and exorbitant costs for insurers, according to media reports.
The fate of the measure in the Senate remains unclear.