ST. PAUL — The weary travelers on the bus, most of them diabetics from Minnesota, erupted into cheers at the GPS announcement: “Welcome to Canada.”
They had just spent 15 hours on a chartered bus traveling from the Twin Cities to buy insulin in London, Ontario. There they can buy the life-saving drug for a tenth of the price it is being sold for in Minnesota.
“I need insulin every day to stay alive, it’s like oxygen,” said Quinn Nystrom, the 33-year-old organizer of last weekend’s more than 815-mile trek and a Type 1 diabetic.
“We should not have to leave the United States … to be able to afford insulin,” added Rosemary Enobakhare, who also helped organize the trip.
Nystrom, of Baxter, Minn., has now organized two of these trips with her group T1International, which advocates for affordable insulin. The Pioneer Press asked to tag along on their latest journey. Nystrom agreed because she wanted the public to see the extremes diabetics have to take to buy affordable insulin.
7:45 a.m. Friday: Depart Twin Cities
Sarah Ginsberg, a nurse from Minnetonka, was diagnosed nearly 50 years ago with Type 1 diabetes. Deb Souther, a former preschool teacher from St. Paul, doesn’t currently have health insurance to help pay for her insulin. Kristen Hoatson of Maple Grove sat with an empty cooler that she planned to fill with insulin for her 11-year-old son.
As the bus pulled out of Minneapolis that Friday morning, the three and others in the small group got to know each other and exchanged stories about how diabetes has affected their lives. Insulin pumps beeped as the 55-seat bus with about a dozen on board traveled along Interstate 94 through Wisconsin, past Chicago and into Michigan.
The 47-year-old Hoatson was living in Indonesia with her family when she noticed her then-8-year-old son was waking up in the middle of the night to use the bathroom. He was diagnosed with Type 1 diabetes, and the family moved back to the United States for support and better treatment options. Now she was on a bus to Canada to buy insulin that her son needs to survive.
“I think drawing attention to how unaffordable insulin is in the United States is a step toward change,” she said to a number of journalists who interviewed her and the others.
The 57-year-old Ginsberg was diagnosed when she was 8. Now her son also is a Type 1 diabetic. He just turned 26, meaning he’s no longer on his parents’ insurance. She remembers when her insulin would cost about $20 a vial when she was a child; now one would cost several hundred dollars.
The 56-year-old Souther has been living with Type 1 diabetes since she was 10. Her husband recently switched jobs, and she currently does not have health insurance and is unsure what kind of coverage she will have with her husband’s new job.
“I’ve been able to get insulin, but not everybody can, and people have died,” she said.
Stories ranged from Hoatson reliving how a faulty refrigerator once froze all of her son’s insulin, making it unusable, to Souther telling how a deliveryman once left her insulin by the wrong door on a hot summer day; it was ruined by the time she found it.
At each stop along the way to Canada, the bus riders got out and held signs they made on the way. “Insulin is life,” “Give me insulin or give me death,” a few of the signs read.
The rising cost of insulin
A typical vial of insulin that will last a diabetic about 10 days costs about $300 without insurance in the United States. In Canada, the exact same type of insulin can be purchased for just $30.
The increase in the price has been dramatic in recent years. The price has nearly doubled from 2012 to 2016, according to the nonprofit organization Health Care Cost Institute. On average in 2012, patients spent $2,864. In 2016, that nearly doubled to about $5,705.
About 1.25 million Americans are living with Type 1 diabetes. And of those Americans taking insulin, one in four are rationing it because they can’t afford it.
“This is unfair, it’s immoral and it’s wrong,” Nystrom said.
PhRMA, which represents major pharmaceutical companies, including insulin makers, blames the rising cost of insulin on pharmacy benefit managers. Pharmacy benefit managers are the middlemen between drugmakers and health insurance companies. Three pharmacy benefit managers manage more than 70 percent of all prescriptions filled in the United States.
Nystrom requires two to three vials of insulin a month. Two vials cost $680 retail price, and even with insurance, she still pays hundreds of dollars a month out of pocket.
In the United States, a prescription is needed to buy insulin, and a diabetic is only allowed a certain amount of insulin a month. If a vial breaks or is lost, the person must call their doctor in order to obtain more insulin.
In Canada, insulin is an over-the-counter medication.
Saturday: Making the purchase
The trip the next morning to actually buy the insulin was an emotional one. It almost wasn’t.
The first pharmacy they tried to make arrangements with canceled on the group. The pharmacy feared there could be repercussions from pharmaceutical companies for dealing with the Minnesota bus group, especially in light of the media attention the group was getting.
A second pharmacy told them they could not deliver the group’s sizable order until the following Tuesday — long after the bus was supposed to return to Minnesota.
Finally, a pharmacy inside a London Walmart came through, and the group departed from their hotel, Guest House on the Mount.
Joining the group was Nicole Smith-Holt of Richfield. She is the mother of Alec Smith, who died two years ago at age 26 because he was rationing his insulin. She has become an advocate for those seeking solutions to the rising costs of insulin and joined the Minnesota caravan. She bought one vial of the same brand of insulin her son used.
“He would still be alive today if I had known at that time two years ago, that I had the option to go cross the border to purchase completely affordable insulin. … I would have crawled, swam, walked if I had to,” she said.
Overall, the bus riders were astonished at how much money they had saved, and said the process was quick and easy.
Hoatson paid $268 for insulin that would have cost her $4,123 back home.
Souther’s insulin costs $380 per vial in the United States, but the same vial cost her about $40 in Canada.
A failed legislative push
The rising cost of insulin became a major sticking point in this year’s legislative session. Smith-Holt, Nystrom and other diabetics led the charge for a proposal that would have created an emergency supply of insulin for those who cannot afford a refill.
Democrats in the House and Republicans in the Senate signed on to the “Alec Smith Emergency Insulin Act” and included the proposal in their respective health and human services bills. But the versions were slightly different and lawmakers did not agree on a compromise to include in their final bills. The two parties have traded blame for that outcome.
“Elected officials did not pass the legislation that they needed this year to protect people living with diabetes. They have a responsibility, that’s why we elect them to office. … I don’t get why these bills aren’t passed. This does not have to be an issue. We wouldn’t have to lose another life in Minnesota if that bill had passed,” Nystrom said.
Gov. Tim Walz said last month that he would call a special session if lawmakers agreed to finish their work on the bill.
“The problem is getting worse daily and we have the capacity to deal with it,” Walz told reporters. “Get this to my desk and I will sign it into law.”
Making a historical side trip
While organizers could have made the trip shorter by going directly north from Minnesota to Thunder Bay, Ontario, or Winnipeg, Manitoba, the group opted to go east. They wanted to visit the house of Frederick Banting, where almost 100 years ago the idea for insulin was conceived. Banting, along with several other researchers created insulin at the University of Toronto.
“We tried in London because it was important for people with diabetes and to pay homage to Dr. Banting. Without the discovery of insulin 99 years ago, I wouldn’t be alive. … I also think it’s important … that insulin was discovered at a publicly funded university, with publicly funded dollars,” Nystrom said.
Banting sold his patent for insulin for $1 because he wanted the drug to be affordable and accessible to those with diabetes.
“I think it’s really tragic to see where the discovery of insulin came 99 years ago with such promising hope … to now where it’s literally turning back to where getting Type 1 diabetes could literally be a death sentence again. Not because there’s no insulin, but because people can’t afford it,” Nystrom said.
Sunday: Coming home
The 815-mile bus ride home to Minnesota on Sunday was a quiet one. Many of the journalists who joined them to talk about the trip had finished their interviews and departed.
So the riders had time to calculate just how much money they saved and were astonished.
Collectively, the 15 people who bought insulin that Saturday would have spent $23,789.24 in the United States. Instead, they spent $1,924.10.