Insulin outlaws: High cost of medication drives Minnesotans across the border to Canada

Fort Frances, Ontario – Six Minnesota diabetes activists, who have dubbed themselves the "Caravan to Canada," approached the U.S. border crossing last Sunday with a mixture of apprehension and defiance.

Their three vehicles were carrying insulin, carefully packed in coolers, that they had bought the day before at a Canadian pharmacy just three blocks away.

Together, they had spent $1,265 for insulin supplies that in the United States would cost an estimated $12,400 — a savings of $11,000.

But as they crossed the Rainy River into International Falls and made their way to the small border outpost wedged among industrial buildings, they wondered if they would be searched — or even if the insulin would be seized.

"I was nervous when all of a sudden we approached the border," said Lija Greenseid, the trip's organizer and mother of a teenage daughter with Type 1 diabetes.

Importing prescription drugs into the United States is illegal, and government health officials have warned consumers that drugs bought outside of American's regulatory umbrella could be counterfeit and unsafe.

"I was very nervous," said Quinn Nystrom, who has Type 1 diabetes. "You hear all this talk ... that you should not go to Canada to buy drugs."

But they made the trip because for some patients, it is increasingly difficult to survive as a diabetic in America. High costs are draining their savings; insulin prices doubled between 2012 and 2016.

Insurance restrictions are making it harder for them to get the insulin that works best for them, as well as the supplies they need to test their blood and inject the medication.

"We talk about freedom here all the time, but the medical system here causes people to be shackled," said Greenseid.

"I always thought it was just me that had these issues," said Vicky Luedtke, a Type 1 diabetic who has never been involved with activism before. "I met these amazing people and I saw it is more than just me. It is a huge epidemic."

Traveling with the group was Nicole Smith-Holt, whose son Alec Smith died about two years ago. He was rationing insulin because he couldn't afford what he needed.

She made a symbolic purchase of a single vial of insulin — one vial would have extended her son's life.

"There are so many what-ifs," she said. "I would have crawled here if I had known that I could come to Canada."

The public outcry over high insulin prices has sparked some movement. Congress has held hearings, one insurer has capped insulin co-pays and one drugmaker will offer a generic insulin at half price. But even at that discount it will still cost five times as much as insulin sold in Canada.

In Minnesota, both the House and Senate have passed bills that would give people access to insulin during an emergency, although the differences between the bills need to be worked out in a conference committee.

Insulin's high cost in the United States reflects many factors, including patent protections that keep competitors out of the market. The pharmacy trade group PhRMA contends that net prices have dropped but that consumers often don't see that because they don't receive the rebates that the industry pays to health insurers and their pharmacy benefit managers.

But unlike most other industrialized countries, drugmakers can set their own prices in the United States. The Canadian government, for example, negotiates with the three big insulin makers that dominate the market worldwide, which results in insulin prices that can be one-tenth of those in the United States. Insulin also can be purchased in Canada without a prescription.

Travis Paulson, another member of last weekend's caravan, can remember when insulin cost $8 a vial.

"It just kept climbing," he said.

The medication is now so expensive that he doesn't use health insurance to buy it. Instead, he gets it mostly from Canada — driving there from his Eveleth home when the weather is good or using a mail-order pharmacy in Vancouver. He hasn't bought insulin in the United States for many years.

"It is just craziness to what the prices have gotten to in America," he said.

Paulson paid about $410 in Canada for 15 vials of insulin that would have cost $5,250 in the States. The supply should last him three to four months.

On his insulin trips to Canada, Paulson often stays overnight. "They can get suspicious if you come and leave on the same day," he said. "I don't want my car to be torn up and searched."

But he has never had a problem getting it across the border.

Although it is illegal, the U.S. Food and Drug Administration (FDA) website says "it typically does not object" to imports if they are for personal use and the supply is for less than three months.

Drug importation from Canada is not new for Minnesotans. Beginning in 1995, the Minnesota Senior Federation organized bus trips to buy drugs north of the border. They gained more popularity after Mark Dayton, then a U.S. senator, pledged his government salary to pay for the trips.

The state of Minnesota also got involved. In 2004, then-Gov. Tim Pawlenty set up the nation's first state-sponsored program to help residents buy drugs from Canada. The FDA opposed the program but never acted to shut it down.

After Medicare introduced drug coverage in 2006, demand for both services dwindled. The bus trips stopped in 2007 and the state shut down its program in 2010 after facilitating 25,000 prescriptions at a savings of $1.7 million.

Twenty years ago, the demand for Canadian drugs was not as high among Americans under age 65. Back then, most people with private insurance faced a small copay. But since then, health insurers have adopted deductibles as a way to control costs and shift more expense to the consumer. Many people now pay sums like $7,500 before their insurance kicks in.

That means diabetics often spend the first few months of each year paying the full cost of insulin. Additionally, insurers have limited the number of insulin formulations and supplies to one or two brands, another move to cut spending.

As a result, some people, like Luedtke, are going without insurance. "When I had insurance, I couldn't get my medications," she said. "I would rather take all my money and invest it in myself."

Luedtke, who runs a fitness studio, works with doctors and other providers who specialize in cash-paying customers. Without having to employ office staff for insurance company paperwork, these providers can offer lower prices.

Still, she is concerned what would happen should she develop a major illness.

"I do worry about that a lot, especially with diabetes," she said. But, she added, "I worry more about not having insulin than health insurance."

Altogether, it took about 15 minutes for five people in the caravan to buy the insulin at a small Fort Frances pharmacy called Shoppers Drug Mart.

Customs turned out to be even faster the next day. As they had decided the previous night, they told the border officer that they were bringing insulin back in.

The disclosure drew no interest or questions from the agent. Instead, he asked about alcohol, tobacco and firearms.

After the caravan made its way through, they stopped to talk.

"That was a nonevent, huh?" said Greenseid.

"Let's do it again," said Luedtke. "None of us are asking for something free. We just want to be able to take care of ourselves."

Glenn Howatt • 612-673-7192 Twitter: @GlennHowatt