Insulin caravan garners worldwide attention on skyrocketing health care costs
Scrambling for time amid her jam-packed afternoon, Quinn Nystrom dialed the Dispatch and gave her hometown newspaper a call.
Nystrom—a prominent diabetes advocate and daughter of the Brainerd lakes area—had been juggling interviews for days. There were five of them alone Tuesday, May 14, the likes of Dutch publications and medical magazines; outlets with imposing names like Newsweek, the Minneapolis Star Tribune, BBC, Al Jazeera; and even a meeting with the Bernie Sanders presidential campaign.
In terms of exposure, it's been unprecedented, if not overwhelming at times.
"The whole thing has been crazy to me," Nystrom said. "I've gotten 25 interviews from all around the world. I've been doing this work for 22 years and I've never had the last nine days like I have. I've done a lot in my diabetes advocacy career, but nothing has blown up like this."
What set off this firestorm? A caravan at the border. Not the notorious caravan of Latin American migrants at the south a la mid-2018, but a small group of travelers to the north, making a kind of pilgrimage May 4 to Fort Frances, Ontario, to buy insulin.
Insulin, an enzymic medication diabetics—particularly Type 1 diabetics—need on a daily basis, has stirred national discourse in recent years, both as a story unto itself, as well as a microcosm of the United States' costly and often dysfunctional health care system. Between 1996-2018, insulin prices rose by 1,200%, while production costs remained static, according to a study by the Harvard Medical Review. Prices doubled between 2012-2016 alone.
When costs for life-sustaining medication climb to back-breaking, often impossible levels, it spurs people to make choices they wouldn't otherwise. For many diabetics—about a fourth, according to T1International—rationing their insulin regimen is one choice, a risky decision that's killed six people in the last two years.
For others, it's a trip across the border to neighboring countries like Mexico or Canada, where insulin is substantially cheaper.
Caravan to Canada
So this caravan—eight sojourners, with five members of the media tagging along—hopped over the border, from International Falls into Fort Frances. There, they collectively spent $1,265 for insulin supplies that would cost an estimated $12,400 a few miles south in the United States.
Among them was Nystrom, as well as her parents Bob and Rachel Reabe Nystrom. There was also Nicole Smith-Holt, whose son Alec Raeshwan Smith died in 2017 at age 26 after he couldn't afford the $1,300 bill for his monthly insulin regimen. A vocal proponent for health industry reform, she joined as an act of solidarity.
Nystrom, a Type 1 diabetic herself, said the caravan was primarily inspired by the basic need for life-sustaining medication. But the caravan was also about drawing attention to the plight of American diabetics and it's eye-catching moniker as a "caravan" is by design.
"You need something catchy. I believe if we didn't pick that handle, I don't believe we would have gotten this attention," said Nystrom, who's long been critical of President Donald Trump and his administration. "I think it got a lot of attention because of that."
The caravan's genesis began in interactions between activists and friends via social media platforms, Nystrom said. Although, it really started when a friend talked about her lack of access to a drug her Type 1 daughter needed, despite having health insurance. Different types of insulin function in different ways, often a finely calibrated relationship between a diabetic and their regimen that can mean the difference between life and death if mishandled.
Packaged as "cost saving," health insurance companies have increasingly limited the types of insulin available to patients and what volume they'll cover, while also raising higher and higher deductibles—now sitting about $7,500 on average—that clients need to pay before they see any benefits.
After insurance companies refused to pay for a specific type of insulin for her friend's daughter—reaffirmed multiple times, Nystrom noted, over the course of 14-15 appeals—the activists decided it was time to visit Canada. There insulin costs a tenth of the U.S. market and doesn't require a prescription.
"I paid way too much for insulin. I paid like $600 for two vials of NovoLog in December," Nystrom said. "So I'm like, 'Yeah, I'm in. I'd love to buy cheap insulin.'"
Most people don't consider it an option to buy insulin from Canada—whether directly, Nystrom noted, or via mail-order as one caravanner has done for years. There's a vague notion, "rumors," it's somehow forbidden, she added.
While the U.S. Food and Drug Administration and American pharmaceutical companies discourage buying foreign medications on account of safety standards—despite manufacturers often selling the same product into Canada as the U.S.—and while Congress has voted down proposals to allow more importation from external markets, there isn't anything legally stopping buyers from purchasing the drugs themselves.
Nystrom said, so long as it's for a personal supply no larger than three months' worth and not intended to be sold commercially, buying life-saving prescription medication like insulin from foreign countries is fair game.
While the activists mobilized, they also contacted Minnesota media—outlets like KARE 11, the Star Tribune—to join them on their journey north. It's a move Nystrom credits with the explosion in publicity that followed.
"There are a lot of Canadians upset with me right now," Nystrom said.
More eyeballs evidently means more critics, Nystrom noted. There are concerns among Canadians that an American influx will adversely affect the Canadian health care market, she said—whether that's causing a medication shortage or inflating their own health care costs via higher taxes to account for American incursions—or simply it's a negative response to Trump.
Nystrom, who said she adamantly refuses to be cowed, said that's a false interpretation.
The caravan pre-ordered their drugs two weeks in advance and specifically asked if it would cause any supply issues, she said. On the other hand, Nystrom noted, Canadian drug prices are negotiated between government agencies and pharmaceuticals—not American prices passed on to taxpayers—so any supposed negative effects could be absorbed by increased lodging, travel and tourism revenue the region enjoys.
"We would never want to hurt Canadian diabetics," Nystrom said. "That's just not our goal. We're just trying to get the word out so politicians move and move quickly on legislation that will make a difference."
But has the insulin caravan done just that—created awareness for the issue and sparked tangible change?
No, at least not yet, said Nystrom, who expressed optimism in the current nationwide discussion on insulin and health care in general.
She pointed to bills in the Minnesota state Legislature to establish emergency insulin reserves, bills in the United States Congress that would reduce premiums and cut prescription costs, to say little of class action lawsuits being launched on pharmaceutical giants by the likes of state Attorney General Keith Ellison.
But, in terms of the ultimate goal, the nation isn't there yet, said Nystrom, who noted she intends to undertake another caravan sometime in late June. Others are welcome to volunteer and join.
"I think it's baby steps," Nystrom said. "But, we've yet to see a bill passed that helps with diabetes affordability. Not one cent in the cost of insulin has come down. Until the price of insulin comes down, I'm not declaring victory."