Why desperate Americans are driving to Canada in caravans for insulin

Quinn Nystrom was expecting the worst.

She thought the U.S. Border Patrol would want to search her car. That she would be bombarded with questions. That they would demand she show her prescription for insulin.

Worst of all, she was worried they would confiscate the small, cold vials of a life-saving drug that she had crossed the border to buy at a pharmacy in Fort Frances, Ont.

But it didn't happen. Not for Nystrom, not for anyone in her small group from Minnesota — calling themselves the Caravan to Canada — who were on a mission last weekend to buy insulin at one-tenth the price of what it's listed in the United States.

As the cost of insulin continues to skyrocket in the U.S., where pharmaceutical companies can dictate the price, people are making the trek north as an alternative to paying thousands of dollars to stay alive.

Insulin and many other drugs cost less in Canada, thanks to the Patented Medicine Prices Review Board, a federal agency that establishes the maximum price that can be charged for patented drugs.

So while an influx of Americans crossing the border to buy insulin won't affect the price, it could hurt supply in Canada.

"There absolutely is some degree of risk," said Barry Power, director of therapeutic content with the Canadian Pharmacists Association.

"If you look at the disparity in the populations, a small percentage of Americans coming to Canada is a disproportionate increase for services and supplies that are earmarked for Canada."

For Americans, it's hardly a long-term solution. For some, it's the only option.

And for others, it's already too late.

Nicole Smith-Holt, also from Minnesota, joined last weekend's Caravan to Canada. Her son, Alec Smith, died in June 2017 from diabetes complications. She said he had been rationing his insulin when he couldn't afford to buy more.

"Mine was a symbolic fight, and going to see how easy and accessible and affordable it is at a pharmacy in Canada," she said. "If I had known about this in 2017, I would have made that trip in 2017 and been able to save his life."

'Desperate measures'

Nystrom, who has Type 1 diabetes, requires insulin to stay alive. She is on a type of fast-acting insulin called NovoLog, which costs about $300 US a vial. The Canadian equivalent, NovoRapid, is about $30 per vial. She was shocked to learn about the price difference.

"I almost felt walking out of that pharmacy like I was robbing the pharmacy. I just couldn't believe it," she said.

But border towns across Canada have seen Americans coming to buy medication for years.

The Guardian Johnson Drug Store in Perth-Andover, N.B., sits just shy of seven kilometres east of the U.S. border. Pharmacist Jill MacIntosh said the store has about 10 patients who come regularly from the U.S.

"We see probably at least one person a week," she said.

Dr. Seema Nagpal, vice-president of science and policy with Diabetes Canada, said her organization is paying attention to the cross-border traffic and potential insulin shortfalls.

"We try to keep our ear to the ground and hear as early as we can if that is becoming a problem, but we just haven't heard that yet."

Nagpal said there are major health risks for people who can't afford to pay for their insulin.

"When a person doesn't have access to treatment that they need in order to sustain their life and to have a future, absolutely I understand there would be desperate measures in order to maintain their health," she said.

But she said Canadians also struggle to pay for their insulin.

"Many people are forced to make choices about whether they pay rent, whether they put certain foods on the table versus filling their prescriptions," she said, adding Diabetes Canada hears about insulin rationing in Canada, as well.

How long a vial of insulin lasts depends on how much a person takes. It could be anywhere from a week to a month.

Right now, insulin isn't available as a generic drug in the U.S., because pharmaceutical companies have made small improvements to insulin over the years to keep it under patent.

Nystrom has health insurance in Minnesota through the Affordable Care Act. But she's on what she calls a high-deductible plan: She pays $370 US a month for the plan itself, but has to pay a $7,800 US deductible before her plan will cover her insulin.

But not everyone in the U.S. has insurance, or is able to get it.

Smith-Holt said before her son died, he had just turned 26, which meant he was no longer eligible to stay on her insurance plan as of June 1, 2017.

On June 22, he went to the pharmacy to get more insulin. He was told it would cost $1,300 US. His body was found June 27.

"We are assuming he was hoping that what he had left he could stretch until payday," Smith-Holt said. "He was just three days short of that payday when he passed away."

High cost of insurance

While there are programs that exist for people over 65 or low-income families, the only other options in the U.S. are coverage through work or to buy it out of pocket.

Lija Greenseid, who organized the Caravan to Canada, lives in St. Paul, Minn. Her 13-year-old daughter has Type 1 diabetes and she and her husband buy insurance through the Affordable Care Act.

Last year, she said they spent $13,000 US just to obtain health insurance — and then $14,000 US out of pocket before her daughter's insulin was covered.

"It's a huge amount of money for us. Because of that, we didn't put any money into our kids' college savings accounts or put anything into retirement for the year. We really just had to pay our health-care bills," Greenseid said.

"So now you can see why we do crazy things like go across the border and buy insulin."

Their fears around crossing the border come from confusion and uncertainty about what's allowed to be brought back into the U.S.

The U.S. Border Patrol declined to answer questions directly and referred CBC News to its website and to the U.S. Food and Drug Administration.

The Border Patrol website says Americans travelling with prescription medication should have it in its original containers, have a copy of the prescription on hand and carry only personal-use quantities, which is a 90-day supply. It was unclear whether the same rules apply to medication bought outside the country. 

The FDA did not reply by deadline for this story.

Len Saunders, an immigration lawyer in Blaine, Wash., on the border with Surrey, B.C., said he's never seen issues with bringing back medication as long as it's not a controlled substance.

"I don't think Americans care about people bringing insulin back to the U.S.," he said.

'They're a national embarrassment'

But crossing the border isn't an option for everyone.

"I don't think it's a long-term solution. And I also think it's sort of a cop-out for the U.S. government," Nystrom said.

"They want to say what a sophisticated country they are, how advanced they are, how they're one of the wealthiest countries in the world, and to me they're a national embarrassment and they are not taking care of their citizens."

In February, the American Pharmacists Association and the Canadian Pharmacists Association issued a joint statement warning that drug importation policies could put patients at risk.

Power, with the Canadian association, said they wanted to highlight that crossing the border to get "cheaper drugs" from Canada is not a solution to problems in the U.S.

"They need to work on addressing the root causes that are causing the price disparities and making Americans take extreme measures to go outside the country to get their medication," he said.

Dr. LaShawn McIver agrees. The senior vice-president of government affairs and advocacy with the American Diabetes Association said 39 per cent of Americans saw the cost of their insulin increase in the last year.

"If people are travelling to other countries because they can't afford their insulin, then that's a problem," said McIver.

She said the U.S. federal health agency is looking at importing lower-cost drugs from other countries. But the American Diabetes Association wants to see changes at home so that insulin is more affordable.

She said the association is working with Congress to find solutions, and is calling for price transparency laws.

While everyone agrees crossing the border isn't a sustainable option, it's likely to continue.

Nystrom said she knows of a group from Michigan that drove up to Canada on Thursday. She's planning another trip in June.

Greenseid wants to rally state politicians in Minnesota to sponsor a bus to bring people to Canada to buy insulin.

"As a mom, I do this lovingly for my child, but I really want to work for change so that it's easier for her when she gets older," Greenseid said. "Because it's just too expensive."