At 10 years old, Quinn Nystrom made a promise she intended to keep. So the precocious fifth-grader from Baxter, Minn., grabbed a clipboard and trudged door-to-door asking neighbors for donations. Their money, she told them, would help to find a cure for people like her 5-year-old brother, Will, who had Type 1 diabetes.
Three years later, she was forced to confront the same daunting diagnosis.
It first seemed like a death sentence to the teen. But she quickly realized that she was in control of her own happiness. “Why not redouble my efforts?” Nystrom recalls thinking.
Over the next two decades, she dedicated her life to fulfilling that oath — and finding a cure. Now 32, Nystrom is a national diabetes advocate who travels the country sharing lessons from her own battle with Type 1 diabetes and empowering others to conquer the disease. The platform has granted her an audience with former President George W. Bush, the late Minnesota Sen. Paul Wellstone and Gov. Mark Dayton when he was a U.S. senator.
She also serves as the sole female City Council member in Baxter, where she is the youngest of her peers by at least a generation. Her term ends in December which, she said, will allow her to focus on full-time advocacy.
Those who know her best say her dogged activism began with those doorknocking days, when she flashed a photo of her baby brother to garner support. But she never stopped and never slowed down.
“We weren’t driving her. She was dragging us along,” said her mother, Rachel Nystrom, a Crow Wing County Commissioner. “It’s like she was born to do this.”
Susan Klimek, executive director of the American Diabetes Association’s (ADA) Minnesota chapter, said that to date Nystrom has raised more than $150,000 for the cause through charity walks and other fundraising drives.
Nystrom’s ability to share her personal experiences in an honest and relatable way has helped thousands of people better understand the daily challenges of diabetes, Klimek said.
Nystrom doesn’t shy away from unflattering stories about herself, like the time she accidentally ripped out her insulin pump while sleeping and awoke to a dangerous spike in blood sugar.
“People are really grateful that somebody was so vulnerable,” Nystrom said. “I don’t say that I’ve made all the right choices.”
Some lessons begin by recounting other people’s foibles, like her high school prom date who asked, “If I kiss you, will I get diabetes?” Years later, she turned the encounter into the title of her first book, which offered a rare first-person perspective from a young person living with the chronic illness.
While Type 1 and Type 2 diabetes are often confused, they are not the same disease. With Type 1 diabetes, which can develop at any age, the pancreas is unable to produce any insulin — the hormone necessary to transform food into energy. The only treatment is to take insulin for the rest of one’s life.
With Type 2 diabetes, the body does make insulin but it is not processed properly, which can harm other organs and cause serious complications. Risk factors include obesity, a sedentary lifestyle, family history and race/ethnicity. Lifestyle modification is the primary treatment, but some people may also need insulin and other medications.
When she’s not speaking or blogging about diabetes, Nystrom attends rallies protesting the skyrocketing price of insulin. In 1999, a vial of Nystrom’s insulin cost around $20. Today, that same vial runs $395. No generic form is available.
Those who can’t afford to pay the 1,200 percent price hike often ration their medications, she said, or are forced to go on the black market.
“It breaks my heart,” she said, noting that Facebook groups have formed to help diabetics disperse extra vials of insulin to one another. Sometimes people meet up in parking lots to exchange the lifesaving liquid, she said.
“We have no idea if the insulin is even good, if it’s been refrigerated,” she said. “It’s sort of playing Russian roulette, but we’re that desperate.”
Next year, Nystrom plans to lobby for an insulin transparency bill that would compel pharmaceutical companies that raise drug prices to go before a medical review board to justify the increase.
In October, Minnesota Attorney General Lori Swanson filed a federal lawsuit against three drug manufacturers for inflating the cost of insulin and accused others of being complicit in the price-gouging of sick and needy patients with diabetes.
Nystrom praised the move. “It’s about time.”