Thank you, Madam Chair and members of the committee.
My name is Victor Lepik and I'm appearing before you as an individual who's lived with type 1 diabetes for more than 30 years. It's my hope that my appearance here today will give you a better idea of the daily challenges I face as a person living with diabetes; some solutions that have greatly enhanced my quality of life; and the need for governments across Canada to improve financial access to important diabetes drugs and services.
Having type 1 diabetes means my pancreas does not produce insulin, a hormone that controls the amount of sugar in my blood. Without insulin, I would have high blood glucose levels, which would affect my major organs, including my heart, blood vessels, nerves, eyes and kidneys, leading to serious, life-threatening complications.
While I'm very conscientious about keeping my diabetes under control, managing my blood sugar is a juggling act. Over the years, I've struggled with low blood sugar and dangerously high blood sugar. Untreated, severe low blood sugar can result in seizures, loss of consciousness and even death. In order to keep my blood sugar under control, I typically require five to seven daily injections of insulin. I also check my blood sugar levels at least 10 times a day to ensure that they're neither too high nor too low.
Late last year, I got a Dexcom continuous glucose monitor and an insulin pump to help manage my disease—decisions that turned out to be life-changing for me.
The continuous glucose monitor helps me manage my blood glucose levels. It consists of a cannula injected into my skin and a transmitter that snaps onto it. I change the cannula every week at a cost of $85. I replace the transmitter every three months at a cost of $389. B.C.'s Fair PharmaCare program does not cover either item.
The transmitter sends a cellphone signal to an app with my blood glucose information. My cellphone sounds an alarm before my blood sugar falls or rises to an unsafe, predetermined level. Unlike a finger-prick device, my continuous glucose monitor tells me whether my blood sugar is rising or falling and at what rate.
I can also share the continuous glucose monitor information electronically with my doctor and diabetes specialists. At a glance, they can easily review my blood sugar management and work with me to make improvements.
I wish I'd had a continuous glucose monitor years ago to prevent severe low blood sugar. In the past, I've often woken up in the middle of the night surrounded by paramedics, firefighters and police officers staring down at me. I have even woken up in hospital without any recollection of how I got there. This has happened to me numerous times.
The continuous glucose monitor allows me to sleep at night without the constant stress and worry that I may not wake up at all. My blood glucose levels are in better control and my physician is happy. An additional benefit is that he is no longer threatening to revoke my driver's licence.
Before the insulin pump, I needed multiple daily injections. Although I worked diligently to maintain tight insulin control to avoid complications, I still struggled with low blood sugar. I sometimes needed to eat in the middle of the night when I was not hungry. Exercise, including neighbourhood walks or playing a game of golf, was difficult, as it typically led to more insulin reactions, more eating and weight gain.
Since getting the insulin pump and continuous glucose monitor, my blood sugar levels are more consistent. I am able to exercise regularly. I rarely have to eat when I'm not hungry, and I've lost 10 pounds and counting. The pump, which typically requires replacement every five years, cost $7,000 last fall when I purchased it. At that time, B.C.'s pharmacare program funded the device only for diabetics aged 25 and under. I am 65 years old. Last July, the B.C. government announced expanded coverage for the insulin pumps by eliminating the age restriction.
While all provinces have a pump program, they are all different and many are pediatric or only up to age 25. Without a national funding program, there are still many Canadians across this country unjustly paying for a device that another province fully funds.
My endocrinologist recently recommended a faster-acting insulin called Fiasp to reduce my high blood sugar levels more quickly. The B.C. pharmacare program does not cover this insulin, and according to Diabetes Canada, no province currently lists it for coverage. It costs $38.49 for a vial that lasts me about two weeks.
While injecting insulin helps me manage my disease, it's not a cure. People with type 1 diabetes often face devastating complications, including heart attack, stroke, blindness, kidney failure, erectile dysfunction, depression, lower-limb amputations, skin conditions, hearing impairment, and an increased risk of Alzheimer's. Preventing these complications would save our health care system millions of dollars annually, yet a major challenge for people like me living with type 1 diabetes in Canada is the cost of medications, devices and supplies needed to manage the disease more efficiently.
The financial burden of managing diabetes can be a heavy one. An insulin pump every five years is $7,000. A continuous glucose monitor transmitter and cannula combined are close to $470 monthly, or more than $5,600 annually. If you include the latest, fast-acting insulin, add another $77 to the monthly cost of managing the disease, for a total of $547 each month or $6,565 annually. To help prevent complications and, most importantly, provide people with diabetes with practical solutions to improve their lives, we need a nationally funded program that is open to all, regardless of age or income.
I would like to thank the honourable members of this committee for inviting me to share my personal experiences and perspective.
I practised for 20 years as a registered dietician, a certified diabetes educator, and now a diabetes case manager in rural New Brunswick. I'm embedded within the offices of 17 community family doctors and nurse practitioners in the Upper River Valley, in my area.
We know that for those who receive diabetes education, diabetes outcomes improve and their complication risk lowers. Many people, for many reasons, do not access the education they need. Access to care should be at the right time and arguably the right place. I would like to share comments made to me by a patient named Anthony: “I prefer to come to my doctor's office. No one knows why I am here. I am just here to see my doctor, just like everyone else. No one judges me.”
Making diabetes education accessible in family doctors' offices is the basis of our diabetes case management program in New Brunswick. It was developed out of a gap analysis that people were not accessing diabetes education at diabetes education centres, so we made it accessible in the family practice office. Our Diabetes Canada clinical practice guidelines and our own New Brunswick diabetes strategy have recommended this model of care. It's known to be as effective in meeting diabetes targets as attending education centres is. Diabetes educators, no matter where they are, make a difference.
About 80% of diabetes care is done within the family practice or family doctors' offices. Almost half are not meeting any of the targets we've set out in our clinical practice guidelines. Family doctors, as you know, are overwhelmed, not only with diabetes but with everything else they have to deal with in their practice. As a case manager, I am their specialist resource right in their office, and I can help them provide a collaborative model of care for the patient, the family, the physician, as well as a learning tool and making timely changes to patients' care.
We have significant and growing evidence that current diabetes therapies can keep people healthy and save lives. Unfortunately, many people live with untreated or inappropriately treated diabetes. They ration or don't take their medications, their insulin; they don't test their sugar; and they reuse their insulin pen needles.
I'm going to share another story with you. Helen is a senior and she has our New Brunswick seniors medical plan. She has type 2 diabetes. She is on insulin and metformin, and she had a heart attack about four years ago. Because she is already on insulin, I cannot help her get a medication with evidence of cardiovascular risk reduction, which may prevent her from having another heart attack, improve her blood sugar and lower her risk of hypoglycemia as well as weight gain. Adding these medications is recommended by our clinical practice guidelines, but our government has chosen not to abide by those guidelines as recommended, or even use the product monographs, which are evidence-based as well. If she had a private plan, we would not be having that conversation.
Standard diabetes care is accessible in New Brunswick, but it's not available to everyone. For diabetes foot care, you have to have coverage or you have to be on income assistance to equitably access it, and cost is a barrier. Many people have to pay up front for their supplies, their insulin and their medications before they are able to access coverage. This is a barrier. I will tell you that many people say—and I hear it every day— that they haven't picked up their medications yet because they have to pay up front and they have to wait for money to do it. Credit cards are not an answer.
Mental wellness specialists have long wait times, and diabetes eye exams, which can help reduce the risk of retinopathy through screening, are not always accessible. Family practice eye doctors certainly are accessible; however, you have to pay for the diabetes eye exam there. If you go to a specialist, it is free, but you have to wait for that. Who can wait?
Fear of hypoglycemia can affect life, and I think Victor outlined that very well. It can be a barrier to your own productivity. I'm not sure if any of the members here have ever had low blood sugar, but I will you tell you, and I know Victor will attest to this, that you feel like crap. You don't feel productive. You are not able to do the things you need to do because you're trying to eat to fix that low. Sometimes you overeat and end up with a sugar that's three times the height it should be. You don't want to wake up your spouse at night for help, so you fall down the stairs because you've had a low.
I've also heard this stigmatizing statement: “So what if they have low blood sugar? They can eat sugar. That's great.” It's not always the most appropriate thing. There are medications and insulins that can reduce the risk of hypoglycemia but are not readily available. Devices can make a difference.
Should I have to ask people living in my area, “What medical coverage do you have?” We've created a have and have-not system of access to diabetes care, medications and insulin. It is a system that festers with discrimination against those who have not.
If they have a private plan, I can help them with more options. If they don't, I'm sorry to say that I tell people every day, “I'm sorry, your plan doesn't cover a medication that I know can help you. It will cost you $200 out of pocket in order to actually have that medication.” We have compassionate programs and samples from doctors' offices, but that's not sustainable.
I would ask you this: Why are we able to provide people suffering from drug addiction with the coverage, free syringes and paraphernalia they need to stay healthy and safe, but we can't do this for people living with diabetes?
I've told people to move out of the country or out of the province to get better coverage. Some people have done this, and I'll tell you that people who have moved to New Brunswick have said, “I'm appalled. I can't believe I had coverage for this elsewhere. I can't believe I have to pay for this insulin. I can't get what I need.”
Should I have to make people choose between picking up insulin or getting groceries? Should they have to shop pharmacies to get the best price for insulin? These are things I deal with every day. It's frustrating, as well, when I have a plan that can provide some coverage but still people are denied that coverage, not because they didn't meet the criteria set out by our government, but because the people who are advising this plan have wrongly read the forms, or they inexplicably say that this is denied when it shouldn't be.
I shouldn't have to advocate for patients. There shouldn't be this issue.
Insulin is essential for life. People living with type 1 diabetes need insulin or they will die.
I'm going to share with you another story. Jeremy lives with type 1 diabetes. Now he's 42 years old. He's a seasonal worker, so of course he had spotty coverage for anything he needed for his diabetes. Now he has retinopathy, and he has nerve damage. He's on peritoneal dialysis. Why are we paying 100% of the cost of peritoneal dialysis for this person when we could have helped him and perhaps prevented this other chronic disease that he now has to live with?
Insulin and arguably all diabetes medications are essential for life. As a diabetes educator, I stand firmly behind that. I'm going to ask you this: Would Banting, Best, Collip and Macleod have thought that their discovery would be only for the rich people of this country, those with money or drug coverage? Would they have wished Canadians not to have access to the medications, supplies and devices needed to help keep them healthy and, of course, ultimately reduce health care costs?
We need to stop failing at what we are doing. We need to create a unified strategy, so that no matter where you live, who you are or what you are doing, you have access to what you need to live well with diabetes. It's crippling our country's health care costs. Diabetes needs to be treated with urgency and promptness, just like other life-threatening diseases. Of all diseases, diabetes is treated when we screw up, when we fail and when blood sugars are uncontrollable.
Let's prevent what we know is going to happen. Let's not react.
These are my asks to you: Support access to the model of diabetes case management, so that more people can gain access to the education and care they need; close the gap between the haves and have-nots to keep people healthy and make things accessible; and support the diabetes 360 strategy from Diabetes Canada, which also outlines a national and unified strategy to improve the lives of Canadians living with diabetes.
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, Madam Chair.
Thank you all for coming.
Ms. Kyle, that was very refreshing, what you said about recognizing coming from privilege and not having to struggle in the way many people do. I'm in a very similar boat. I was raised by a lawyer. I'm a physician married to another physician. I will never have trouble making ends meet if I have a catastrophic diagnosis of any sort. Whatever else I have to worry about, how I pay for it is never going to be an issue.
However, for 20 years I was an emergency doctor, and for the last eight years it was in an inner-city hospital. If you spend time in a hospital like that, you understand.... I understand how truly privileged I am when some of my patients literally didn't have homes, never mind that they couldn't afford medications.
One of the things I've been passionate about is national pharmacare. Again, I know we're talking about diabetes, but this folds into it because it's such a major disease.
One of the things concerning me of late is the amount of very organized push-back we're getting from certain interests in the community. At another meeting, a representative of Johnson & Johnson claimed that our strategy to decrease drug prices is going to make Canada a non-competitive environment for the development of new medications.
There's some information out there claiming that if we decrease the price of our medications, it's going to inhibit development of new drugs, and this will put the lives of Canadians at risk. Could you respond to that statement? I'll ask all three of you in turn.
Ms. Kyle, go ahead.