In 1923, the Canadian scientists who discovered insulin gave up their patent for $1 to make it available to all diabetics. But a century later, that promise is far from fulfilled.
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Kate Pidwerbecki is a type 1 diabetic and director of U.S. operations for T1 International.
Photo: Kate Pidwerbecki
Insulin certainly doesn’t belong to humans. It is owned by three major pharmaceutical companies. […]“I think the developers of insulin would be outraged,” says Kate Pidwerbecki bluntly.
The young woman from Portland, Oregon, has lived with type 1 diabetes for 22 years. She explains that the fear of not being able to pay for this vital treatment led her to take out expensive private insurance.
“Again, with insurance, insulin and other necessities, I would say it costs me more than $2,000 out of pocket every month,” she says.
Between 2007 and 2018, the price of some of the most common insulins tripled in the United States.
In 2021, one in five Americans under age 65 reported rationing their insulin during the year due to cost.
Three pharmaceutical giants, Eli Lilly, Sanofi and Novo Nordisk, control 96% of the world’s insulin supply.
To mark the 100th anniversary of the Nobel Prize being awarded to Canadian scientists for the discovery of insulin, Radio-Canada is presenting a series about the discovery that changed the lives of millions of people.
- TOMORROW: Access difficulties elsewhere in the world
- WEDNESDAY: A first Nobel Prize will be awarded to Canadians
Many Canadians depend on their employers
In Canada, a federal board exercises some control over drug prices, and prices are generally lower there. But even then, some Canadians spend up to 20% of their income on managing their diabetes, according to an analysis by Diabetes Canada.
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Linxi Mytkolli struggled to find a new job shortly after being diagnosed with diabetes so she could afford her treatment.
Photo: Radio-Canada
According to Diabetes Canada, the cost of self-glucose monitoring devices typically ranges between $2,000 and $6,000 per year. Many provinces offer partial or full reimbursement, but diabetic policies and fees vary from place to place.
The proportion of costs reimbursed by the state for people with type 1 diabetes varies between 0 and 100%, the organization says.
Edit
Since it was first published, this text has been modified to reflect differences in covered costs between provinces and to report the average cost of glucose sensors based on Diabetes Canada data. We also removed part of the quote from Linxi Mytkolli, who said that her costs are $1,000 per month, so as not to give the impression that her payments reflect the usual situation of all diabetics in the country.
Linxi Mytkolli, who was diagnosed three years ago, says the type of insulin that works best for her is not covered by Ontario’s public plan.
Insulin administration is not possible without a blood glucose meter. Nowadays it is also very difficult to use insulin without a glucose sensor.
I quickly realized that the cost to me without private insurance was a difference of $4,000 per month. “It was an impossible choice: career or treatment,” she says. I had to take a job that wasn’t my dream job but where the insurance was great.
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In Canada, public coverage for insulin, glucometers and injections varies by province and territory.
Photo: Radio-Canada
Ravjot Samra, also a diabetic and a member of the Ontario chapter of T1 International, was no longer eligible for his parents’ insurance after his 25th birthday. His treatment then cost him $1,500 a month.
If I hadn’t had the support of my family, I don’t know what would have happened, she admits.
Thanks to her job, she is now insured, but emphasizes that this is not the case for everyone.
Because we have a mosaic of public and private insurance [au Canada] , it all depends on where you live, your job and your income. Depending on these factors, getting access to insulin can be extremely frustrating.
In Canada, more and more people with diabetes are telling us about the difficulties they face in financing their healthcare. “We take this problem seriously,” assures a spokesman for Novo Nordisk.
The company says low-income Canadians can receive free insulin through its compassionate care program.
According to the WHO, an unfair market
The promise that insulin would belong to the world has not been fulfilled. Today, at least 30 million people who need insulin do not have access to it, according to a 2021 report from the World Health Organization (WHO).
The report lists a number of causes, including the uncompetitive market environment dominated by three pharmaceutical companies with significant power over pricing, supply and demand.
The problem is particularly acute in low- and middle-income countries, but even in Canada or the United States there are people who do not have access or financial capacity to fully pay for all items, be it insulin or diagnostic tests, points out Dr. Slim Slama, Head of the WHO Division for the Treatment of Noncommunicable Diseases.
Here, the aspects of health insurance, insurance coverage and health care are crucial, he adds.
The expert also believes that governments should better regulate, or at least be transparent about, the surcharges and various taxes that may be imposed on medicines.
He says he is very encouraged to see that Canada introduced a national diabetes framework last year.
The Diabetes Compact, which the WHO established in 2021 with the support of Canada, also continues its mission to address access to health care issues at a global level.
Price cuts promised in the USA
A series of high-profile deaths among young Americans who rationed their insulin in recent years have prompted some states to pursue regulatory reforms.
Minnesota passed the Alec Smith Affordable Insulin Act in 2020 in honor of the 26-year-old, who died of a diabetes complication shortly after losing his insurance.
Three months later, Eli Lilly and Novo Nordisk each announced price cuts of up to 75% for some of their insulins in the US starting in January 2024.
We understand that some patients have difficulty paying for their health care, including insulin. That’s why Novo Nordisk is committed to ensuring affordable access to insulin by reducing the burden of direct costs.
Still, Kate Pidwerbecki, who heads T1 International’s U.S. business, remains skeptical. She remembers that as part of its big announcement, Eli Lilly promised to offer insulin lispro for $25 starting May 1.
It was exciting news at first, she said.
But when I went to my pharmacy to see if I could get the $25 insulin, I was told they didn’t have any in stock.
No one could tell him when it would happen. A second attempt a few weeks later also failed.
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Eli Lilly is one of three companies that control 96% of the world’s insulin supply.
Photo: The Associated Press / Darron Cummings
I think we’re seeing these big announcements that seem much more promising and important than what patients are actually experiencing. […] “If this product is not available, it is not saving lives, it is saving Eli Lilly,” concludes Kate Pidwerbecki.
In a report released in July, three U.S. senators, including Elizabeth Warren, reported that even pharmacies that carry Lispro rarely offer it at the promised price.
At the 332 pharmacies contacted for their report, the average retail price for patients without insurance was $97. Nine pharmacies sold this product for more than $200.
Eli Lilly did not respond to questions from Radio-Canada.