Quinn Nystrom of Baxter, Minnesota was 10 years old in 1996, when her little brother got diagnosed with Type 1 diabetes.
She promised him she would do everything she could to find a cure and make his life easier as he managed his illness. When she was diagnosed herself at 13, she didn’t let up. She spoke in classrooms, door-knocked, and eventually became the youth ambassador for the American Diabetes Association.
In a lot of ways, she’s the same person she was then. She’s 33, she heads up the Minnesota chapter of a patient-led organization called T1International, and she’s been advocating for people with her and her brother’s condition for pretty much her whole life. But some things have changed. When she was diagnosed, the insulin she needed to survive cost $20 a vial. Now, a single vial can cost hundreds of dollars out of pocket.
Nystrom’s main goal has been trying to get state legislators to make insulin more affordable and accessible to everyone, and this last session has been a bitter disappointment. A bipartisan bill to create an emergency insulin fund stumbled and failed in the Republican-controlled Senate, and a lot of Minnesotans, she says, can’t wait around for lawmakers to get their act together.
“If we wait until the next session, more people are going to die,” she says. “I don’t know how else to say it.”
Meanwhile, back in April, fellow T1International member Lija Greenseid threw up a post on Facebook. Her daughter has Type 1, so she was toying with the idea of driving up to Canada, where insulin costs a fraction of what it does in the United States and is available over the counter. She asked if anyone else was interested.
This intrigued Nystrom. She’s been asked all the time why she doesn’t just get her meds mailed to her from up north. For one thing, it’s risky. Insulin is a sensitive drug, and has to be properly chilled. For another, there’s a chance she could be ripped off by some back-alley pharmaceutical network. And for another, it’s legally… shady.
But going to Canada in person, on a supply run? That just might work.
“Yeah,” she said. “Let’s go.”
A grassroots crew of patients and caregivers jumped into some mini vans and made the trip back in May. They popped into a pharmacy, asked for the brand of insulin they wanted in what quantity, got chatted up, and left without incident. In a surreal turn, what started as a pilgrimage across borders ended in a boring but productive trip to the drugstore.
But after Nystrom tweeted about the experience, she was surprised by the massive response she got from both the public and the media. She ended up doing 25 to 30 interviews about her insulin run, and people started sending her messages asking when she was going to go again… and if they could come, too.
“I felt I had a specific responsibility to go on another trip,” she says.
So, she and T1International organized a big bus caravan starting June 28. It would leave from Minneapolis and stop in Madison, Chicago, and Lansing before arriving in London, Canada, where the crew would hit up the pharmacy and the historic home of Sir Frederick Banting, who helped discover insulin in 1922. Everyone leaves well informed and well supplied.
It’s not a perfect plan. For one thing, there’s that legal gray area. Allison Bailey, the United States’ advocacy manager for T1International, says they’re going with guidance from the Food and Drug Administration and have no intention to break the law. That said, “No lawyer has been able to, or in fairness should, 100 percent guarantee that there won’t be any issues at the border.”
“Most feel that it’s unlikely, but no one can say for certain,” she says.
But it’s more than that, Nystrom says. She’s done everything she can to keep the trip affordable—the bus is free, and hotel vouchers are available—and still not everyone can go. She’s had single parents message her that they can’t afford to take time off work to make a three-day trip, and doctors remind her that many of their patients can’t afford to get a passport.
In the end, Canada cannot and should not be the answer to the American insulin problem, just as a Band-Aid should not be the answer to a shotgun wound.
“These caravans are not the solution to this crisis,” Nystrom says. Only consistent access to affordable, accessible insulin in this country can guarantee everyone who needs it can get it. But one thing the caravan does do is remind everyone the literal lengths some Minnesotans are making just to get medicine they need to live.
“We’re not stopping this fight,” she says.
There are still seats available on the bus. You can find out more and claim a spot here.