As their minivan rolled north, they felt their nerves kick in — but they kept on driving.
At the wheel: Lija Greenseid, a rule-abiding Minnesota mom steering her Mazda5 on a cross-border drug run.
Her daughter, who is 13, has Type 1 diabetes and needs insulin. In the United States, it can cost hundreds of dollars per vial. In Canada, you can buy it without a prescription for a tenth of that price.
So Greenseid led a small caravan last month to Fort Frances, Ontario, where she and five other Americans paid about $1,200 for drugs that would have cost them $12,000 in the United States.
“It felt like we were robbing the pharmacy,” said Quinn Nystrom, a Type 1 diabetic who joined the caravan that day. “It had been years since I had 10 vials in my hands.”
They’re planning another run to Canada this month to stock up on insulin. This time, they’ll be taking the scenic route, driving from Minnesota through Wisconsin, Illinois and Michigan en route to London, Ontario, where insulin was discovered nearly a century ago.
Like millions of other Americans, Greenseid and Nystrom are stressed and outraged by the rising costs of prescription drugs in the U.S. — a problem that both Republicans and Democrats have promised to fix.
Insulin is a big part of the challenge. More than 30 million Americans have diabetes, according to the American Diabetes Association. About 7.5 million, including 1.5 million with Type 1 diabetes, rely on insulin.
Between 2012 and 2016, the cost of insulin for treating Type 1 diabetes nearly doubled in the U.S., according to the nonprofit Health Care Cost Institute.
Some pharmaceutical companies, under pressure from U.S. lawmakers, have tried to reduce the cost for some patients. But many who rely on insulin still struggle. Large numbers resort to rationing — a dangerous and sometimes deadly practice.
Some diabetics and their families are taking matters into their own hands. They meet in coffee shops and strip mall parking lots to exchange emergency supplies. An unknown number travel outside the country to buy the lifesaving drug for less.
None of this is recommended by U.S. officials, and some of it might be illegal, under Food and Drug Administration guidelines. But the organizers of the caravan — their word — are speaking out about their trip because they want Americans to see how drug prices push ordinary people to extremes.
“When you have a bad health care system, it makes good people feel like outlaws,” Greenseid said.
The caravaners aren’t the only ones looking north. Republicans and Democrats have produced federal and state proposals to import drugs from Canada.
Those ideas aren’t necessarily popular in Ottawa, where many worry that bulk buys from the United States could cause shortages or drive up prices.
Barry Power, director of therapeutic content at the Canadian Pharmacists Association, said he has yet to see a disruption to Canadian insulin supplies. He said insulin prices in Canada are controlled through policy, including price caps and negotiations with manufacturers.
“This is something the U.S. could do,” he said.
A spokeswoman for the Pharmaceutical Research and Manufacturers of America noted that drug companies are increasingly offering rebates on insulin in the United States — but they aren’t always reaching consumers.
“Too often, these negotiated discounts and rebates are not shared with patients, resulting in the sickest patients paying higher out-of-pocket costs to subsidize the healthy,” PhRMA spokeswoman Holly Campbell said in an email. “This is the opposite of how health insurance is supposed to work.”
Greenseid, who has purchased insulin for her daughter in six countries, said U.S. prices stand out as not just high, but unpredictable. As people bounce between insurance plans and navigate rebates, she said, you often “have no idea how much you are going to pay.”
In the United States, you can buy some types of insulin without a prescription. But to get the newer analog insulin on which Type 1 diabetics rely, you need to visit or call your doctor.
LaShawn McIver, a senior vice president of the American Diabetes Association, said: “Insulin is not a luxury, it is a matter of life and death.’’
A spokeswoman for the Department of Health and Human Services, which oversees the FDA, said the Trump administration is focused on lowering drug prices.
President Donald Trump and Health Secretary Alex Azar “are both very open to the importation of prescription drugs as long as it can be done safely and can deliver real results for American patients,” said spokeswoman Caitlin Oakley.
Until things change, the caravaners say, they’ll keep driving. Their first trip led to queries from families across the country. Some want to join.
So when they head north in the coming weeks, they’ll switch from family cars to a chartered bus.