As talks at State Capitol derail, Minnesota diabetics pay price

Meghan Mateuszczyk wants her lawmakers, who can't meet a 30-day deadline, to understand a real deadline.

January 10, 2020 at 4:47PM
Minnesota Gov. Tim Walz called Monday for public hearings as a way to break an impasse over insulin affordability legislation. At right is an empty insulin vial painted gold.
Minnesota Gov. Tim Walz called Monday for public hearings as a way to break an impasse over insulin affordability legislation. At right is an empty insulin vial painted gold. (Vince Tuss — Associated Press/The Minnesota Star Tribune)

Five hundred dollars. That's the price Meghan Mateuszczyk, pays for 30 days of life.

Five hundred dollars buys this 20-year-old college sophomore a month's supply of insulin.

One month, she didn't have $500.

"I'm shaking in my boots at the pharmacy counter, every time," she said, "scared to see that number pop up."

When the number that popped up on the register was more than she could afford, she burst into tears at the pharmacy counter.

The worker behind the counter took pity, opened a box, and offered her a single insulin pen; a lifeline to get her through the next week.

"'I know it's medication you really need,'" she remembers the woman telling her.

"I was crying, 'Thank you, thank you. I will try to figure out what I can do to come back and [buy] the other pens, because I will need them,' " said Mateuszczyk, a student at Minnesota State University Moorhead who is juggling the cost of college with the cost of medicine she can't live without. Insulin prices have tripled in the decade since she was diagnosed with Type 1 diabetes.

An emergency insulin program might have been a real lifesaver.

Minnesota lawmakers talked about creating a program like that all last session.

When the session ended without a bill, they kept talking. For six months. Or for $3,000, if you measure the months like Meghan Mateuszczyk does.

Last week, the governor called a news conference to announce that it had been 30 days since negotiators gave themselves 30 days to draft emergency insulin legislation and save some lives. Senate Republicans countered that it had, in fact, only been 28 days.

One thing they all agree on is that what happened to Alec Smith — who died while trying to ration his insulin until payday — should never happen to another Minnesotan.

The talks derailed over the details. Republicans wanted the state to pick up the tab for emergency insulin. The DFL wanted pharmaceutical companies to pay the price.

While lawmakers talked insulin to death, Minnesotans with diabetes just tried to survive.

Some trekked to Canada, where a vial of insulin that costs $300 here retails for $30. Some used expired insulin or bought supplies in back alleys.

Some rationed insulin like Alec Smith.

Some died like Alec Smith.

Jesimya David Scherer-Radcliff, 21, of St. Louis Park, died of complications from diabetes in June. His family said he'd been trying to ration his insulin.

Annette Gentile, 52, of Mayer, Minn., said time is of the essence for diabetics like herself.

"It makes me angry to hear people say, 'Well they can wait. They can go to the doctor and their doctor can give them insulin," It takes about 10 days to get an appointment to see her doctor. If Gentile ran out of insulin, she wouldn't have 10 days.

She wouldn't have 10 hours.

The other day, she said, she took her usual morning dose of insulin, then left the house for Tuesday Bible study — and left her insulin behind.

By the time she got home, four hours later, her blood sugar levels were "already starting to climb out of control."

"My stomach was upset," she said. "I was already starting to not feel well. That was four hours without insulin. That's not very long."

Gentile, who has a 17-year-old son, suffered four heart attacks because of damage the disease has done to her body.

She applied for the assistance programs the pharma companies promised. They said her income was too high to qualify. At the time, her only income was disability payments that barely covered her rent.

She needs $964 worth of insulin each month, on top of all her other prescriptions.

"I went to the pharmacy," she said. "They told me how much it was going to be, and I cried."

Mateuszczyk wants her lawmakers, who can't meet a 30-day deadline, to understand a real deadline.

She takes empty insulin vials, paints them gold, and hands them out to politicians, hoping they'll understand. These tiny glass capsules of American insulin are priced like gold and infinitely more precious.

When the governor talked about insulin last week, a tiny Gold Vial Project vial sat on the lectern beside him.

"Picture yourself having to pay $500 a month to breathe oxygen," Mateuszczyk said. "You didn't ask for your human anatomy to require oxygen. I didn't ask for my pancreas to stop working."

She didn't ask for her lawmakers to stop working either.

about the writer

about the writer

Jennifer Brooks

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Jennifer Brooks is a local columnist for the Minnesota Star Tribune. She travels across Minnesota, writing thoughtful and surprising stories about residents and issues.

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