Lija Greenseid prepares to draw insulin at her home in St. Paul, Minn. Greenseid, whose daughter has Type 1 diabetes, is organizing a group trip to Canada to buy insulin at one-tenth the U.S. cost. MUST CREDIT: Photos for The Washington Post by Jenn Ackerman

Some American diabetics, struggling with vials of insulin that cost hundreds of dollars, are driving to Canada and buying it without a prescription for a tenth of the price.

Lija Greenseid, a Minnesota mom, led a small group of cars last month on what was, in essence, a cross-border drug run. Her daughter has Type 1 diabetes and needs insulin, so she and five other Americans drove to Fort Frances, Ontario, where they 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 -- and to call attention to their cause. 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 Americans, Greenseid and Nystrom are stressed and angered by the rising costs of prescription drugs in the United States -- a problem Republicans and Democrats alike 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, 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, a nod to the migrants traveling in groups through Mexico to the U.S. border -- 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. "It's demeaning. It's demoralizing. It's unjust."

When the Canadian scientist Frederick Banting co-discovered insulin in the early 1920s, he balked at commercializing it because it seemed unethical to profit from a critical drug. He eventually sold his share of the patent to the University of Toronto for $1, an attempt to keep the drug widely accessible.

In the nearly 100 years since, insulin has become a lifeline for millions. But the price in the United States has surged in ways its discoverers could not have predicted.

When Nystrom was diagnosed with diabetes as a child in the late 1990s, she said, her family paid about $15 to $20 a vial. Now, at 33, she sometimes pays more than $300 for the same amount.

Nicole Smith-Holt, who drove north with Greenseid and Nystrom, said her son spent about $1,000 per month on the drug. Alec Raeshawn Smith, an uninsured Type 1 diabetic, rationed his insulin supply due to cost, his mother said. He died in 2017.

Elizabeth Pfiester is founder and executive director of T1International, a British-based nonprofit that advocates for people with Type 1 diabetes around the world.

"It's kind of a myth that America has the best health care system in the world because it is set up to allow Americans to go bankrupt or die because they can't afford their medicine," she said.

A representative 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 spokesman Holly Campbell said in an email. "This is the opposite of how health insurance is supposed to work."

Until things change, the caravaners say, they'll keep driving.

Their first trip led to queries from families across the country, they said, including Type 1 diabetics, parents of children with diabetes and family members supporting elderly relatives with diabetes. Some want to join.

So when they head north in a few weeks, they'll switch from family cars to a chartered bus.

A Section on 06/17/2019