Good morning. Thank you for inviting me here again to speak to diabetes strategies in Canada and abroad. This is an area of significant importance for me and more than 425 million other people living with diabetes in Canada and around the world.
My name is Louise Kyle. I am a law student at the University of Ottawa, a student leader of Universities Allied for Essential Medicines, an advocate with the 100 Campaign, a runner, a skier, a daughter, a sister, a partner, a friend. I also live with type 1 diabetes.
In 2013, I was in the Dominican Republic with AYUDA, an organization that empowers youth to become agents of change in diabetes communities around the world, in conjunction with a local diabetes organization.
On the day of the youth camp, which coincided with a 10-kilometre race to raise awareness and reduce stigma about diabetes, I met a father who was registering his three-year-old daughter for camp. He could see that I had my race bib on and realized that I had run the 10K. He asked me how it went, and I shared that it was tough, very hot, but that I love to run and it is an important part of my life.
I asked his daughter if she wanted to check her blood sugar, and when she told me that it hurt and she didn't like to, I asked her if she wanted me to do it first. Shocked, the father said, “Do you have diabetes?” I told him I'd been living with diabetes for 20 years. He was almost in tears as he told me that he had never met another person who had lived as long as I have with type 1 diabetes.
As you've heard, type 1 diabetes is a condition in which the body no longer produces insulin. Therapy requires insulin administration and regular blood glucose testing. Without insulin, someone with type 1 diabetes will die in a matter of days, and it will be painful. With insufficient access to insulin, a person with type 1 diabetes is at risk for longer-term complications. As you've heard, these complications massively impact the overall quality of life and ultimately can cause premature death.
Type 2 diabetes is a condition where the body still makes insulin, but the insulin is insufficient for what the body needs. This means that some people will need to take medicine to make their insulin work better, or they may need to administer insulin as well.
That father in the Dominican Republic hadn't met anyone who had lived as long as I have with type 1 diabetes, because in many places around the world, access to adequate treatment and support is out of reach for people who depend on it for their survival. Shockingly, today—and you will have heard me say this before—despite the fact that the first use of insulin to treat someone with type 1 diabetes, here in Canada, was in 1922, one out of two people globally who require insulin do not have access to it.
Diabetes is challenging. It requires a constant balance of activity, food and insulin. I was diagnosed in 1993, when I was two and a half. I don't remember much about this part of my life. I remember that when I was first diagnosed, I used test strips that gave me a range: less than four, four to 10, 10 to 16, or over 16. I used human insulin: NPH and R. This didn't last long.
I have seen huge technological improvements over my 25 years with diabetes: from test strips that took only 60 seconds to provide a reading, to test strips that spit out a result in five seconds, and now we have flash glucose and continuous glucose monitoring, which provide trend arrows, as you heard Victor mention. My NPH and R were replaced with analogue insulin, and ultimately with an insulin pump, which I use today.
Growing up in Calgary, Alberta meant that I had access through our health system to an amazing team of doctors, nurses and dietitians. Despite not having public benefits, my parents were always able to purchase insulin, test strips and other supplies that I needed—even an insulin pump. These are decisions that my parents were able to make because of privilege. Not everyone has access to these options. This is a very important distinction to make.
I don't remember a life without diabetes, and for me it's just been another part of life. This is not the case for everyone who lives with diabetes. Today, 57% of Canadians cannot follow their prescribed therapy due to cost. As you heard from Michelle, individuals living in New Brunswick, as well as in Quebec, Saskatchewan, Nova Scotia, and P.E.I., who use an insulin pump and have an income of less than $15,000 all spend more than 25% of their income on out-of-pocket diabetes costs.
These are people who are forced to make decisions about whether they will spend money on medicines and technology that will save their life or on other basic necessities. It is worth noting that nearly one million people go without food and heat in order to pay for medicine in our country.
Furthermore, a study published just this Tuesday by UBC researchers found that 731,000 people in Canada, primarily young people with chronic conditions and no prescription drug insurance—doesn't that sound familiar?—borrow money, give up necessities or go into debt to pay for their prescription medicines.
Low-income Canadians are disproportionately affected by the high costs of treating diabetes. They have a higher risk of cardiovascular complications and death compared to individuals with higher socio-economic status. A study estimated that 5,000 deaths in Ontario alone could have been prevented with universal drug coverage for diabetes supplies.
Diabetes-related mortality is as much as three times higher for indigenous populations in Canada than for non-indigenous populations. A recent policy round table found that these challenges can be linked to “variability across the country in terms of public and private insurance coverage for medications and supplies for those managing their diabetes.”
As you know, insulin was discovered here in Canada by Frederick Banting and his team of researchers. Banting wanted to see insulin mass-produced and distributed to those who need it. He chose to sell the patent rights to the University of Toronto for a symbolic $1, famously saying, “Insulin does not belong to me, it belongs to the world.” That was in 1921.
Despite the fact that insulin was synthesized in Canada nearly 100 years ago, a lack of affordable insulin remains the leading cause of death for young people living with type 1 diabetes. I will repeat that today one in two people who need this medicine to live does not have access. The reasons for this lack of access are multi-faceted, but a major issue, as you've heard, is that insulin and other supplies are priced at a level that is above what many people can afford. The cost of insulin alone—just one piece of the complicated diabetes picture—can eat up 25% of a family's income in low- and middle-income countries.
Despite current list prices of analog insulins like Humalog and Lantus sitting around $300 U.S. per vial, a recent study in the journal BMJ Global Health found that the cost of producing one vial of analog insulin is between $3.69 U.S. and $6.16 U.S. In Canada, one year's supply of analog Lantus, which is just one half of a typical insulin regimen, costs about $1,800. Researchers in the same study contended that analog insulin could be sold for $133 per patient per year, and the manufacturers would still make a profit.
Despite insulin being nearly a century old, the insulin market hasn't played by the rules of a normal competitive market. We have three big insulin manufacturers who dominate 90% of the insulin market, and prices have been increasing in lockstep. The price of insulin tripled between 2002 and 2013.
These statistics should make us question what happened in our system. We should be asking why we're living in a time when more than one person died last year rationing their insulin in the United States, and only 1% of children living with type 1 diabetes in sub-Saharan Africa will live six years past diagnosis.
Canada is the birthplace of insulin. We should be the ones to amplify the insulin access movement. Canada can, and should, be a leader and hold other states to account to ensure that human rights for all people are upheld. All provinces and territories in Canada should lower out-of-pocket costs for people with diabetes. Vital diabetes supplies, including insulin and other supplies that you've heard mentioned today, should be free at the point of delivery at all pharmacies across the country.
We should be using Canada's standing on the international stage to advance non-communicable disease treatment, including that for type 1 and type 2 diabetes. Canada could spearhead a World Health Assembly resolution on diabetes or on insulin access. Global Affairs Canada should fund projects and programs that will improve access to insulin worldwide. This could include incentivizing biosimilar production of insulins and other diabetes medications. Then we should impose price controls on off-patent medicines.
We should be improving transparency within our drug pricing system. Canada should provide the procurement prices of insulins to Health Action International to inform their access study.
Diabetes is a complicated disease. It has disastrous effects if not treated properly. In 2016, 1.6 million deaths were directly caused by diabetes. Without consistent insulin access, no matter how much we invest in prevention strategies, this will not change.
The demand for insulin is only growing. In fact, a study published just yesterday estimates that the number of people living with type 2 diabetes who require insulin will rise to 80 million by 2030. More than a half of these people will face challenges accessing the insulin they need. Comprehensive access to insulin would avert over 260,000 disability-adjusted life years just this year. By 2030, this could increase to 331,000.
Many claim that diabetes is no longer a death sentence thanks to Banting. But 2022 will be the 100th anniversary of the first use of insulin to treat a person with type 1 diabetes, and half the people worldwide do not have access.
I challenge Canada to be a leader to ensure that, by 2022, we can say with confidence that diabetes is no longer a death sentence for anyone around the world.
Thank you.
