It has been called “insulin tourism.” But to a caravan of Americans who crossed the border to Canada earlier this summer, it was also a pilgrimage.
They left downtown Minneapolis in a bus at 7 a.m., picked up passengers and vehicles across four states and ended up, near midnight, at a modestly priced guest house in London, Ont. The following morning, they made a run to the Wal-Mart pharmacy—stocking up on the life-saving drug at Canadian prices, a tenth of the U.S. cost—and then assembled at the yellow brick house where Sir Frederick Banting awoke one night in 1920 and came up with the idea for insulin.
But while the caravan to Banting House, a national historic site, garnered a lot of press—as did the one to Windsor, Ont., by U.S. presidential hopeful Bernie Sanders in late July—the Americans paying homage at the birthplace of insulin are not the only ones struggling to afford the drug.
The headlines aren’t capturing just how much quiet desperation has struck Americans who can’t afford the daily drug that keeps them alive. Some are also turning to Mexico for supplies, according to news reports. Others are rationing their daily doses. A patient survey commissioned by the American Diabetes Association last year found that high prices were causing more than a quarter to miss or lower doses or switch to a cheaper type of insulin than the one their doctor prescribed.
It’s not just the legendarily dysfunctional American health care system. Studies conducted by Amsterdam-based Health Action International have found that insulin is unaffordable in most countries around the world. A separate study published last year in the journal BMJ Global Health put the number who can’t afford insulin at 50 million worldwide, half of those who need it.
“It’s not a U.S. problem, it’s a global problem,” says Molly Lepeska, project manager of the Addressing the Challenge and Constraints of Insulin Sources and Supply (ACCISS).
Worse than the need to scrounge for cheap insulin is that people are still dying from the lack of it. Type 1 diabetes, which strikes people whose bodies don’t make insulin, is an outright death sentence in sub-Saharan Africa, Lepeska says. On the continent as a whole, about 50,000 people under 20 have the disease, according to the latest International Diabetes Atlas. And some young adult diabetics in the U.S. have died recently because they couldn’t afford insulin, homes scattered with pens of the stuff desperately mangled to extract their last drops.
Sitting here in Canada watching all this unfold, you have to wonder: What would Banting say?
“I think he’d be very disturbed,” says Christopher Rutty, a medical historian who is an adjunct professor at the Dalla Lana School of Public Health at the University of Toronto, adding: “Essentially, the whole way insulin was developed and set up … was a very unique Canadian approach that was designed to prevent exactly this sort of situation.”
Canadians learn the story of insulin at their parents’ knees. Frederick Banting, a young doctor trying to make ends meet in London, awoke at 2 a.m. on Halloween morning in 1920 and wrote down 25 words that would eventually keep millions of people alive. It was a hypothesis for extracting the hormone insulin from the pancreas.
Within a week, he had taken the idea to U of T, where the Scottish physiologist John Macleod gave him laboratory space and the help of the student physician Charles Best. Within months, Banting and Best had isolated insulin in the tissue of dog pancreas and used it to restore diabetic dogs to health. Tests on humans with calf insulin followed, bringing people back from the doorway of death. Insulin was the resurrection drug.
A Nobel Prize followed for Banting in 1923, Canada’s first. (Macleod was a co-laureate.) And a knighthood.
But rather than try to make millions off the miracle treatment, Banting and his team sold the patent for insulin to the governors of U of T for $1. Banting famously declared: “Insulin does not belong to me, it belongs to the world.”
“It’s a story that is ingrained in us,” Rutty says. “It’s imbued with our Canadian values. Our whole original story of insulin is really a uniquely Canadian thing.”
READ MORE: Fear and loathing in Canadian pharmacies
Did the university governors try to squeeze every last dime out of the patent, gouging those most in need with limited supply? No. They saw the drug as a public good. They asked for help from the Connaught Laboratories, a quasi-commercial entity originally set up in one of the university’s medical buildings near the start of the First World War to produce low-cost vaccines. Eventually, the pharmaceutical company Eli Lilly came on board to help produce enough insulin for commercial use.
But U of T was so determined to prevent a monopoly that would curtail patients’ access to the drug that it extended its patent to 25 countries, set up insulin oversight committees overseas and established a system of “patent pooling” so it could control innovations and costs. That lasted until the Second World War.
And insulin prices were stable within a penny or two until the 1970s when inflation hit at the same time as the supply of cow and pig pancreas tissue from abattoirs dropped, Rutty says.
“It is a very distinctly Canadian story, the discovery and development of insulin,” he says. “I don’t think it would have happened anywhere else quite the same way with the same results.”
In fact, Rutty says, the approach to developing and marketing insulin laid the philosophical track for Canada’s medicare system.
Today, nearly 100 years on, insulin is mega-big business: a $27-billion global market. Ninety per cent of it is controlled by three companies: Eli Lilly, Sanofi and Novo Nordisk, according to a review in 2016 by ACCISS in Amsterdam.
In the U.S., the average price of insulin has tripled over the past 15 years, even though its formulation has remained largely unchanged for nearly two decades, according to testimony in April to a Congress subcommittee on insulin affordability by endocrinologist Alvin Powers of the Endocrine Society.
The drug companies are responsible for setting those prices and reap most of the profits from them, Kasia Lipska, an endocrinologist at the Yale School of Medicine, testified at the same subcommittee. And it’s the drug companies that have to bring the costs down, she said.
It’s not to say that today’s insulin is exactly the same as the one Banting and Best produced. For decades, thanks to the technological and scientific wizardry of the pharmaceutical industry, it has no longer been made from the pancreas tissue of slaughtered cows and pigs, says the diabetes researcher Bernard Zinman, professor of medicine at U of T and senior scientist at the Lunenfeld-Tanenbaum Research Institute at Mount Sinai Hospital.
Instead, it is grown in a lab from the human insulin gene combined with the genetic material of a micro-organism and then harvested. A subset of these human insulins, called analog insulins, are genetically altered to make them work in slightly different ways. They’re more expensive.
But the result is limitless insulin. This is not a problem of short global supply pushing prices higher.
“Now, we can make as much insulin as we want,” Zinman says, adding: “I think the price of insulin should be decreasing.”
In Canada, prices are controlled by the Patented Medicine Prices Review Board. But there’s no call to be smug. Mina Tadrous of U of T’s Leslie Dan Faculty of Pharmacy said some of his patients are also rationing insulin because of cost. It’s scary.
“Even though we can look at the U.S. and say, ‘Oh, at least we’re not as bad as them!’ we still have an issue,” he says. “These drugs can still add up, especially if someone is paying out of pocket for them.”
Tadrous, who is also an investigator with the Ontario Drug Policy Research Network, says he’s concerned at how long the newer, more complex types of human insulin are protected by multiple patents, sometimes down to the molecule. It keeps costs high not just for individuals, but also for the public system.
“These drugs have basically monopolies in the market with no end in sight,” he says.
What would Banting say? He died in 1941 in a plane crash on a wartime mission. His co-discoverer, Charles Best, lived until 1978, refusing to cash in on his fame by moving to the U.S., said his grand-daughter Mairi Best. She is an eminent ocean scientist and an international senior adviser on earth-ocean science, based in Sudbury, Ont. She was 12 when he died.
Instead, Best stayed at U of T building the medical research department that still bears his name and Banting’s, cheering as he watched the public health system evolve.
What would Best say to the need for insulin caravans?
“I heard that and I thought: Grampy would be so disappointed,” Mairi Best says, adding: “That was not why they did this.”
This article appears in print in the September 2019 issue of Maclean’s magazine with the headline, “What would Frederick Banting think?” Subscribe to the monthly print magazine here.