When Travis Paulson drove from his home in northern Minnesota to the Canadian border last month, he thought he’d have little trouble crossing over to buy his insulin.
Paulson, a Type 1 diabetic, has made the trip many times for himself and others as the price of the lifesaving drug has skyrocketed in the United States over the last decade. A vial in Canada costs roughly $25 US, a fraction of the $350 to $400 he would be charged in his home country.
Paulson called Canada Border Services ahead of time to see if he’d still be able to come into Canada. Travel between the two countries has been restricted during the COVID-19 pandemic, but Paulson said he was told he could still make the trip if he only went to the pharmacy and came back the same day.
But when he arrived at the border near Fort Frances, Ont., he said he was told there had been a policy change that very morning — and he couldn’t come into Canada because his trip was not deemed essential.
“It’s devastating because your life depends on it. You’re literally being denied the air that you need to breathe,” said Paulson, the director of the diabetes organization Northern Minnesota Advocacy Group.
“Every few hours you need it, every day. And that you might not be able to get it, I would say it’s a little terrifying.”
Many Americans rely on going up north to buy insulin, where it is roughly a tenth of the price. Canada’s Patented Medicine Prices Review Board, a federal agency that establishes the maximum price that can be charged for patented drugs, keeps the prices affordable.
But the COVID-19 border restrictions have meant that option is no longer available.
While some pharmaceutical companies in the U.S. are offering programs for cheaper insulin during the pandemic, advocates say still not enough is being done to make it affordable.
A spokesperson for the Canada Border Services Agency said Americans may be allowed to enter the country to purchase medications, but the agency offers little clarity on who will be allowed in and when.
“Entry to Canada is decided on a case-by-case basis and based on the information made available to the border services officer at the time of entry,” spokesperson Judith Gadbois-St-Cyr said in an email.
Until at least June 21, there is a temporary restriction on all non-essential travel between Canada and the U.S. That could be further prolonged if deemed necessary, Gadbois-St-Cyr said.
Quinn Nystrom, a long-time diabetes and affordable health-care advocate in Minnesota, said she’s received several calls since the border closures began, including one from a panicked mother.
“She said her nine-year-old son was on his last insulin pen,” Nystrom said, adding that the woman’s husband had been planning a trip to Canada in the spring to buy more.
“They were just completely distraught over it.”
Nystrom gained international attention last year for organizing and taking part in several Caravans to Canada — trips to show just how easy and affordable it is to buy insulin outside of the U.S.
A Type 1 diabetic herself, Nystrom went to her congressman, Pete Stauber, last spring, begging him to protect people with pre-existing conditions and vote to help lower the cost of insulin.
“He promised me he would do that. And after leaving his office and following up with him over the next couple of months, he unfortunately voted against those things,” she said.
“It was so unfortunate to me that I decided to file and run against him.”
On Sunday, Nystrom won the Democratic nomination in Minnesota’s 8th congressional district and will be up against Stauber on the ballot in November.
Access to affordable insulin can be a matter of life and death for Americans.
Nicole Smith-Holt’s son died in June 2017 at just 26 years old, less than a month after he aged off of his parents’ insurance plan. He couldn’t afford the cost at a pharmacy in Minnesota and chose instead to ration his insulin.
Smith-Holt said the border closures to Canada and Mexico put up “one more barrier” for struggling Americans, especially as many of them have lost their jobs and therefore their insurance during the pandemic.
“People are going to start rationing and people are going to suffer some very long-term health effects or possibly death,” she said.
“A Type 1 diabetic really should not be lowering their dosage or missing doses. It proved fatal for Alec and countless other people.”
But Alec Smith’s family, friends and supporters worked to make sure his death wasn’t in vain.
On July 1, the Alec Smith Insulin Affordability Act will come into effect in Minnesota. It will allow people who cannot afford their insulin to access a 30-day supply at their pharmacy for just $35.
The new law also streamlines the process to access insulin in the long-term and manufacturers can be fined up to $3.6 million for not participating in the program.
“It means that we’re going to have the ability to save lives,” Smith-Holt said.
“People right now, especially during this COVID-19 pandemic, are really struggling. It’s going to be a lifeline for people.”
Pharmaceutical companies making pandemic programs
Since the pandemic started, some pharmaceutical companies in the United States have created programs to help struggling diabetics.
Eli Lilly, the U.S. manufacturer of fast-acting insulin Humalog, created a program in April to help those without insurance access a month’s supply for $35.
But these programs are difficult to apply for, advocates say, and often many people don’t meet the criteria to be eligible.
It’s also just a temporary solution, Nystrom said, adding that the issue of insulin affordability won’t go away when the pandemic does.
With few options due to border restrictions, some Americans, like Paulson, are turning to online Canadian pharmacies.
Some Canadian pharmacies will ship insulin to the U.S., but the National Association of Pharmacy Regulatory Authorities in Ottawa said it’s important to verify the legitimacy of an outlet if ordering online by checking with the province’s regulating body.
One of the most well-known pharmacies to Americans is Mark’s Marine Pharmacy in Vancouver, just 40 kilometres from the U.S. border. It ships insulin to people across the U.S., but requires a doctor’s prescription to do so — a requirement in America.
People also turn to GoFundMe, social media and “underground networks.”
Lija Greenseid, an insulin advocate in St. Paul, Minn., and mother of a 14-year-old daughter who has Type 1 diabetes, said people in local diabetes Facebook groups will share extra insulin if they switch brands and even give up unused vials if someone has died.
“That’s another strange consequence of our health-care system,” said Greenseid, who organized a Caravan to Canada last spring.
While some insurance companies have now capped their deductibles at $25 a month, the list price for insulin in the U.S. hasn’t been cut.
‘The ultimate goal is to be like Canada’
Greenseid had always been comforted by the knowledge that Canada was a short drive away. It’s an option no longer there.
“What is reassuring is knowing that there is an insulin underground network of people who get insulin and give it to people who need it. That’s always there.” Greenseid said.
Nystrom said Americans don’t want to have to rely on outside countries to get affordable medications — and she hopes to make that possible if elected in November.
“The ultimate goal is to be like Canada, where somebody can just go to a pharmacy and pick up insulin for $30 US. That’s our goal,” she said.
“So people don’t have to rely on a pharmaceutical company deciding to be charitable.”
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