Quinn Nystrom had several good reasons why she shouldn’t have travelled to Canada last month to buy insulin, much less shared her plans widely on social media.
First, by importing medicines across the border to her home in Minnesota, Nystrom was breaking the law.
“I always believed what the pharmaceutical companies and the FDA told us: It is illegal, and it is unsafe,” she says. Those admonishments are at least half right. Insulin sold in Canadian pharmacies is not only the same version that is sold in the U.S., it is manufactured here. But it is against the law to re-import it back to the U.S.
The other good reason for Nystrom to refrain from this public act? By publicly drawing attention to the fact that insulin, like virtually all prescription medicines, is priced far lower in Canada and other countries than the U.S., Nystrom jeopardized her own livelihood. Until recently, much of Nystrom’s income came from the pharmaceutical companies that benefit from these high U.S. prices. Diagnosed at age 13 with Type 1 diabetes, Nystrom was chosen soon after to be a youth advocate representing the American Diabetes Association across the country. She went on to build a career out of public speaking and writing about living with diabetes, with pharma companies serving as her top customers for speaking engagements and bulk book purchases.
But Nystrom made the trip anyway. She is among the 40 percent of working Americans who has a high-deductible health insurance plan, which forced her to spend $15,000 out of pocket last year for care. Much of that cost was for the insulin she and others with Type 1 diabetes need to survive.
Although recent research confirms that a vial of insulin is manufactured by pharma corporations at a cost of about $5, Nystrom and others pay as much as $300 for that same vial. That represents a 1,000 percent-plus increase in price for the same formula of insulin since the late 1990s, a hike that helps fuel the profits that make the pharmaceutical industry one of the most lucrative business sectors in modern history.
As she watched those prices and profits climb, Nystrom began to express her concerns. She posted her eye-popping pharmacy receipts online and saw others with diabetes begin to do the same. Many of them shared stories of rationing their insulin due to cost, something one in four Americans with Type 1 do, according to a recent Yale University report. Because insulin rationing can lead to diabetic ketoacidosis, the online and in-person discussions began to include stories of Americans who died because they could not afford insulin. Soon, Nystrom met Nicole Smith-Holt, also from Minnesota, whose 26 year-old son Alec died in 2017 after rationing his insulin.
As she deliberated about speaking out and the trouble it would cause her, Nystrom leaned on the lessons of her faith. Raised a Presbyterian in the small Minnesota town of Brainerd, Nystrom accompanied her mother on the congregation’s domestic mission trips. There, she not only heard the biblical mandate to care for her neighbors, she saw the mandate acted on.
“To me, calling out the injustice is an obligation,” she says. “If Jesus was on earth today, what would He be doing? Helping those who need it the most. And our U.S. health care system is failing so many and so miserably that this has become a life or death situation.”
Nystrom started calling out the pharma corporations by name, and the U.S. politicians that allow the companies free rein to charge prices that are unthinkable in other nations.
“Let’s be honest: The companies and the U.S. government are allowing people to die,” she says. “I wasn’t going to sugar coat that message.”
The reaction was swift: her speaking engagements and book sales stopped. “It was an immediate and total cut-off,” she says. Even many diabetes patient groups, reliant on insulin manufacturer donations, distanced themselves from her. But other patient groups embraced Nystrom, in particular T1International, which refuses to accept any pharma industry money. Nystrom and Smith-Holt joined several others to create a Minnesota chapter of T1I’s #insulin4all movement.
At the same time, in nearby Michigan, Jillian Rippolone was discovering her own local advocacy community. Diagnosed at age 8 with Type 1, Rippolone remembers a time when the family insurance lapsed. She and her brother, who also has Type 1, had to leave a pharmacy empty-handed, unable to pay a $200 charge for the insulin they needed. The siblings borrowed each other’s supplies to get by, and often had to ration.
“I am grateful that we survived all that,” Rippolone says. “And I also am very aware that others are still struggling like that every day.”
Rippolone helped create the Michigan chapter of T1International. She admits that she regularly shares insulin with others who are running out of their supplies, even though sharing insulin is illegal. When asked why, she invokes the lesson of her Catholic faith.
“If someone needs insulin to survive, are you going to tell them no? God would never turn anybody away, and we shouldn’t either,” she says. “I’m not giving someone heroin or Xanax. I’m giving them a hormone that our bodies do not produce, and we need it to live."
While Nystrom, Smith-Holt, and other Minnesota advocates were traveling to Canada, Rippolone and a group from Michigan were doing the same. All the Americans were able to buy insulin at just one-tenth the cost they were paying in their U.S. pharmacies. When they posted accounts of the trip on social media, the response took them by surprise. U.S., Canadian, and British media all reported on the caravans, and Nystrom alone ended up giving more than 30 interviews.
“It felt like the patients were finally having a voice in the conversation that is usually dominated by politicians or doctors,” says Rippolone. “For once, here was a real first-hand account of what is affecting our lives.”
To the advocates, the viral response to their caravans reflect the same frustration that has led to polls showing widespread demand for lower drug prices and reform legislation being proposed in Congress and in state legislatures.
“The issue of insulin affordability has reached a fever pitch,” Nystrom says. “It just affects so many Americans. People are dying, and now you have family members like Nicole willing to go in front of a camera and talk about it.”
Nystrom, Rippolone, Smith-Holt, and other advocates are seizing the momentum. Under the banner of T1International, they will lead a bus caravan to Canada on June 28-30, with multiple stops along the way for rallies and press conferences. When they reach their destination of London, Ontario, they will head to the pharmacy, of course. But they will also visit the Banting House, the home of Sir Frederick Banting, who discovered insulin and sold his patent for a single dollar so that the medicine could be available to all in need.
After their trips to Canada last month, Nystrom, Rippolone, and the other advocates returned home to messages from others with diabetes who had been rationing the insulin they could not afford. These people wanted to go buy cheaper insulin from Canada, too, but were afraid to do it alone.
“I don’t want to get arrested, but if I have to do it to save lives, I have no problem with it,” Nystrom says. “History will show we are right.”