Health Committee on Nov. 27th, 2012

[The Chair, Conservative, Joy Smith]

I call the meeting to order.

Good morning, ladies and gentlemen. We have a very special day today. We are studying juvenile diabetes and we have some very special guests with us. They're all set to go.

I'm going to give you some instructions, ladies and gentlemen.

I'm going to ask Mr. McKee and Ms. Sissmore to make a five-minute presentation only because we need to listen to our other guests as well. We have seven guests today and that's quite a bit.

We're going to open with opening remarks. Mr. McKee, you have five minutes. Would you start, please?

[Andrew McKee, President and Chief Executive Officer, Juvenile Diabetes Research Foundation Canada]

Thank you, Madam Chairperson.

Good morning.

I'd like to thank the committee for inviting JDRF to appear before you today during National Diabetes Awareness Month.

JDRF is the largest, not-for-profit charitable supporter of type 1 diabetes research globally. Founded in 1974, JDRF Canada has chapters located across Canada, and we are driven by passionate, grassroots volunteers, several of whom you are going to meet today.

The goal of JDRF research is to improve the lives of every person affected by type 1 diabetes by accelerating progress on the most promising opportunities for curing, better treating, and preventing the disease.

Today, JDRF has brought 40 young delegates from across Canada for our fourth Kids for a Cure Day. These remarkable kids are meeting with parliamentarians to share their type 1 diabetes story. They are among the more than three million Canadians who live with diabetes every day.

Type 1 diabetes is an autoimmune disease that occurs when the body's own immune system attacks and destroys the insulin-producing cells of the pancreas. This disease usually strikes in childhood and lasts a lifetime. Living with type 1 diabetes is a constant challenge from which there is no vacation.

The theme for this year's Kids for a Cure Day is “Living proof...a cure is within reach”. The stories of these children, some of whom you'll hear from in a moment, are nothing short of inspirational.

The history of diabetes research in Canada is, in every sense, a history of innovation. Over 90 years ago, Canada's Dr. Banting and Dr. Best gave the life-saving gift of insulin to the world. In 1999, a Canadian team of researchers accomplished a major breakthrough in islet cell transplantation, now known worldwide as the Edmonton protocol.

This committee has made the study of technological innovation in health care a priority. I want to share with you some of the significant and innovative technological advances in diabetes care being made right here in Canada and jointly supported by the Government of Canada and JDRF.

In 2009, the Government of Canada, through the Federal Economic Development Agency for Southern Ontario, committed $20 million as part of a $33.9 million partnership with JDRF to support the development of the JDRF Canadian clinical trial network in southern Ontario.

JDRF CCTN, as it is known, has assembled a team of highly experienced doctors, scientists, academia, and other clinical support professionals who currently are operating in 24 sites across Ontario. JDRF CCTN provides, for the first time in Canada, an independently funded and supervised platform for the clinical testing of new technology as it becomes available. JDRF CCTN has launched nine clinical trials and two technology projects focused around the artificial pancreas project, diabetes complications, immunology, and clinical care programs, and through this initiative has created in excess of 200 high-paying jobs in southern Ontario.

JDRF CCTN trials and studies provide reliable, evidence-based evaluations that establish not only the value of technology, but also contribute to safe implementation of these technologies within our community. This high quality, breadth, and depth of the JDRF CCTN studies will significantly stimulate adoption of drugs and devices by patients and clinicians, and will contribute to the development of evidence-based clinical practice guidelines.

The JDRFI artificial pancreas program represents a coordinated and collaborative effort to concentrate and focus resources on developing a closed-loop system that connects information from continuous glucose monitors with insulin pump delivery systems. Computer programs, or algorithms, digest all of the information and automatically give the correct signal to deliver proper amounts of insulin, depending on the circumstances of meal, activity, sleep, and so on. “Closed loop” refers to the fact that such systems can be automated, thereby markedly improving the quality of controlling blood sugar, the same way the pancreas does in people living without diabetes.

JDRF CCTN has approved studies that provide an ideal clinical platform to help advance the global APP effort. For example, Dr. Margaret Lawson, here at the Children's Hospital of Eastern Ontario, is leading a study of more than 100 individuals to determine if initiating continuous glucose monitoring at the same time as pump therapy in children and adolescents with established type 1 diabetes results in more sustained continuous glucose monitoring use compared to delaying CGM introduction until six months after pump initiation.

JDRF CCTN's trial focusing on CGM in women with type 1 diabetes in pregnancy is being led by Dr. Denice Feig from Mount Sinai Hospital in Toronto. This is the first global trial of continuous glucose monitoring in pregnancy. The primary objective of the study is to determine if real-time continuous glucose monitoring can improve glycemic control in women with type 1 diabetes who are pregnant or planning pregnancy. This trial is expected to set the standard for the use of this technology and to improve both fetal and maternal outcomes.

Dr. Bruce Perkins at the University Health Network is also using this technology to assess an algorithm that can detect impending hypoglycemia and stop the delivery of insulin, or the basal—

[The Chair, Conservative, Joy Smith]

Could I ask you to sum it up? We're over time now.

[Andrew McKee]

When the JDRF CCTN partnership was originally proposed, JDRF set a goal to initiate three human clinical trials in southern Ontario. I'm pleased to report that JDRF CCTN has exceeded that goal, initiating nine clinical trials and two technology projects. JDRF CCTN provides a platform for researchers and industry to test their treatments and technology sooner, ensuring that Canadian patients have access to the newest—

[The Chair, Conservative, Joy Smith]

Thank you, Mr. McKee. Thank you very much.

We'll now go to Ms. Sissmore.

[Deborah Sissmore, Ambassador, Juvenile Diabetes Research Foundation Canada]

Thank you, Madam Chair. I was told I have five minutes to make an impact, so here goes.

I've been living with type 1 diabetes for almost 46 years. Due to complications, I lost my eyesight when I was 30 years old. I'm completely blind. That's what this disease can cause: devastating complications—blindness, kidney failure, heart disease, and amputations.

Since I was diagnosed at the age of four, many advances have been made in the care and treatment of type 1 diabetes, or T1D. Those include the home glucose monitor; they weren't invented until I was a late teenager. There were two kinds of insulins when I was a kid: beef and pork, extracted from cows and pigs, plopped into vials, and injected pretty much in raw form. Today, we have synthetic insulins, very sophisticated insulins.

Even injection methods have come a long way. I used a glass syringe as a kid. It had to be sterilized in boiling water every morning, whereas today we have the insulin pen and the insulin pump. The tools that have been developed have helped those living with T1D today, but it's far from perfect. You see, there are a lot of factors influencing blood glucose control—factors outside our own control. Those include not only diet and exercise, but also illness, stress, and even hormones. So there is a lot of guesswork when it comes to insulin dose, and it can be very frustrating.

About 15 years ago I suffered from a condition called hypoglycemia unawareness. It's a condition in which you are no longer aware of your low blood glucose levels. The danger is that you could go into a coma at any time, with no awareness of this. Those days, we didn't have the continuous glucose monitors of today. I was testing obsessively then, not knowing whether my blood glucose levels were so high that they were damaging the organs of my body or, conversely, whether they were so low that I could be in a coma the next minute—I had no idea.

Desperate times called for desperate measures, and I applied for, and was accepted into, an experimental, world-renowned transplant program developed for those living with T1D, called the Edmonton Protocol. The team takes a donor pancreas from someone who has died and isolates the insulin-producing cells—the islet cells—from that pancreas. Those islet cells are then transplanted into the liver of someone living with T1D. Those islet cells then graft onto the liver and they get to work. They start to produce insulin.

I've had two islet-cell transplants, and I can tell you that they have saved my life. Since those transplants, I require little to no insulin, with perfect blood glucose control. Right here, right now, I have islet cells in my liver that are producing insulin. However, there are restrictions to the Edmonton Protocol. You see, to prevent rejection, you must take a daily dose of powerful immunosuppressive drugs for the rest of your life. Also, there is a lack of donors.

I am living proof that research in the field of type 1 diabetes is working. It's making a difference. But further research needs to be done, which brings us to the JDRF Canadian Clinical Trial Network and its focus in research on the care, management, and cure for type 1 diabetes.

[The Chair, Conservative, Joy Smith]

You have one minute left, Ms. Sissmore.

[Deborah Sissmore]

Because of the great strides made in the field of T1D research, I firmly believe that there will be a cure for type 1 diabetes in my lifetime, which will mean that these children here today, and so many others, will not have to face devastating, if not life-threatening, complications.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you so much for your very compelling testimony here today. We really appreciate it, Ms. Sissmore, and of course Mr. McKee as well.

Now we are going to begin with the co-chair, Mr. Michael Thornton. I guess I will begin with you, sir. You have two to three minutes.

Please begin.

[Michael Thornton, Ambassador, Juvenile Diabetes Research Foundation Canada]

Good morning. My name is Michael Thornton, and I am 12 years old. I am from Mr. Kellway's riding of the Beaches—East York, and I am thankful that you have invited me here to speak today.

I am so proud to be a diabetes champion and co-chair for this year's Kids for a Cure Day. I have made it my life's mission to help find a cure for type 1 diabetes.

From the age of six, when I was diagnosed, I accepted that I had to live with this disease. I will not let my diagnosis interfere with my dreams and goals. My day used to start with a needle and end with a needle. Now I am on an insulin pump, and I only have to change my site once every three days.

I still have to keep testing my blood sugar levels on a constant basis, but I have more flexibility and I don't have to take that many needles now. This helps, but now I have to always have it attached to my body for the rest of my life.

Although I live with the challenges that diabetes brings, I continue to live my life to the fullest. I travel internationally as a top competitor in soccer and track and field, which are my two favourite sports. Everywhere I go I find myself speaking about diabetes and educating those around me on what it is like to live with this disease. I want to show the world that diabetes will not stop me from being the best that I can be.

I have learned to manage this disease very well, calculating my carbs, always testing my blood glucose prior to and after meals and exercise, and I eat extremely healthy.

Still, when I compete in track and field, I wish I could only focus on the race itself. Instead I have to check my blood sugars, adjust my insulin, and take my pump off and store it in a safe place. I have to be really careful that I compete with good blood glucose levels to ensure my best performance. This is really tough to do.

When I play soccer, I wish I didn't have to wear an insulin pump while playing. I wish I could play an entire game without having to test my blood glucose levels before, during, and after a game or practice.

In March I received a special invitation to train and play in the professional soccer club of A.S. Roma's Youth Academy in Italy. Also this past summer, I was a member of the Canadian soccer team that competed in the world junior diabetes cup in Switzerland.

In July of this year I was competing in an international soccer tournament in England when a Manchester City scout took notice of my soccer talent. Now I will be returning back to the United Kingdom to showcase my soccer skills at other professional clubs there. These were experiences of a lifetime. Being able to display my talents internationally is a dream come true.

I have learned to manage my diabetes very well, calculate my carbs, and I am always testing my blood sugar prior to and after meals and exercise. I eat healthy, and I carry a diabetic kit with me everywhere I go. One day I aspire to be one of the best soccer players in the world. To me, a cure for diabetes would mean being able to live a life with more freedom.

The success that I have is not only for me but for everyone who has to live with diabetes. I am a little person, but I know I can make a big difference. It would be a miracle if a cure could be found during my life time, and I will do whatever it takes to make it happen.

[The Chair, Conservative, Joy Smith]

Wow, Michael. You play soccer, and you speak so well. Your presentation was dynamic. Thank you so much for that. You do make a difference. I think all of us were very touched by what you had to say. Thank you.

Now we will go to our next guest, which will be Mr. Noah Stock.

Noah, you have two to three minutes. We would love to hear what you have to say. Can you begin now?

[Noah Stock, Ambassador, Juvenile Diabetes Research Foundation Canada]

Hi. My name is Noah Stock. I am eight years old and I am in grade 3 at West Bayfield in Barrie, Ontario.

I was diagnosed with type 1 diabetes when I was only 21 months old. I don't really remember it because I was too small, but my mom and dad tell me that I was really sick and had to be in the hospital for a week.

I remember getting lots of needles. Things are better now with my insulin pump. My mom changes the site every three days. Still I have had countless finger pokes and needles and doctors' appointments.

I had to keep track of everything I do. It all affects my numbers. I also have to follow a healthy, well-balanced, low-sugar diet. I still wish I could be a regular kid. My family worries about me a lot, even though I tell them that I am okay.

For me, a cure would mean I would get to be a normal kid like my friends. It would mean never having to wear a pump, no more finger pokes, no more needles. I could eat whatever I wanted, like my sisters do. I could play at my friends' houses and have sleepovers. Overcoming the challenges I face with my diabetes makes me feel like I can do anything. I am my own superhero. I am living proof that I can be anything I want when I grow up. I am determined to try new things even if it takes a lot of planning.

I know I can do it, just like I know that we can one day find a cure for type 1 diabetes.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you, Noah. Your speech was extremely inspiring. I know you can do everything you want to do as well. You're an awesome kid. Thank you for coming.

Our next guest is Marley Greenberg. We look forward to hearing from you, Marley.

Take it away.

[Marley Greenberg, Ambassador, Juvenile Diabetes Research Foundation Canada]

Good morning. My name is Marley. I live in Thornhill, Ontario. Thank you for having me here today. I am 13 years old and I was diagnosed with type 1 diabetes four years ago. My mom was also diagnosed with type 1 diabetes when she was a child. She's lived with type 1 diabetes for over 40 years now.

Like any other person, when I was diagnosed I was scared. Even though I had my mom and all her experience living with diabetes, it was still difficult to learn to cope with this disease. I had to learn how to count carbohydrates, take blood tests, give myself injections, and explain everything I was doing to other people.

Now I am using an insulin pump. I love it. It gives me so much more freedom to do the things I love, like dancing and playing sports. I'm able to eat when and what I want to, sleep in, and take a lot fewer needles.

Things can still go wrong. Sometimes my catheter gets bent when it's inserted or it's ripped out accidentally. If we don't realize that this has happened, my blood sugars go extremely high. When my blood sugars are high, I feel really sick, and it takes a really long time to feel better. A great addition to the insulin pump is the continuous glucose monitor. It helps me to prevent low and high blood sugars. I have only used it a few times, but it has made a huge difference with managing my diabetes.

Even with the insulin pump, I still take 5 to 10 blood tests a day, and I have to watch everything I put into my mouth. There is never a time that I am able to forget that I have diabetes. Sometimes that makes it harder for me to participate in the things I want to do, or do them to the best of my ability. In gym class, if my blood sugars go too low, I have to eat, sit out, and wait for my blood sugars to go back up before I can participate again. Sometimes when I go out with my friends, if my blood sugars are too high and everyone else is buying something to eat, I can't. I have to take more blood tests, take an insulin injection, and then wait to make sure I get my blood sugars back in control. I find I'm missing out on all the fun stuff my friends are doing because I am worrying so much about my diabetes.

A cure for type 1 diabetes would mean everything to me. It would make my life so much easier and more enjoyable. I wouldn't have to worry about diabetic complications. I wouldn't have to worry about my children also being diagnosed with type 1 diabetes. I think that together we can make a difference in the lives of all people living with diabetes and ultimately find a cure.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you, Marley. That was very well spoken and very well delivered. It was quite profound. Thank you very much.

Now we'll go to Miguel Rémillard. We look forward to hearing from you, sir.

[Miguel Rémillard, Ambassador, Juvenile Diabetes Research Foundation Canada]

Good morning. My name is Miguel Rémillard. I am 11 years old and I am from Winnipeg. I'm excited to be here to tell you my diabetes story. I'm more excited about the hope for a cure.

I was diagnosed with type 1 diabetes when I was only two and a half years old. It was a hot summer day in August 2003 that my parents will never forget. It changed my life. That's the day I had my first shot of insulin and finger poke. That's the day we had to learn about carbohydrates. It's when we learned about the delicate balancing act of living with diabetes. It's the day my parents started worrying about complications. It's the day my life sentence began.

I have at least 10 finger pokes and at least 4 shots of insulin per day. Some days it's 12 finger pokes and 5 to 6 insulin injections. So far, in my 9 years of living with type 1 diabetes, I have had over 46,000 insulin shots and finger pokes. That's too many pokes. I now do most of my diabetes care myself, like my own insulin shots and fingers pokes. I figure out my insulin dosage based on my blood sugar and how many carbohydrates I eat.

To me, a cure for type 1 diabetes would mean no more pokes and no more insulin shots, no more stopping to check my blood sugar, no more worries of highs or lows, and no more worries about complications. No more annoying bracelets and no more balancing food, insulin, and activities. It would mean no more type 1 diabetes for me and for anyone. I could just be a happy, healthy kid. I have dreams of being a hockey star or an Olympian or a rock star. I dream of being someone's hero. I dream of making new discoveries, of changing the world, and of living to be 90 years old, like my great-grandmother. Most of all I dream of a life without type 1 diabetes.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you, Miguel. You're our hero.

All of you are our heroes as you come today and tell your story, because it helps us a lot, so thank you.

Now we have another one, Maksim Stadler.

[Maksim Stadler, Ambassador, Juvenile Diabetes Research Foundation Canada]

Hello. My name is Maksim Stadler. I'm 11 years old and I'm from Beamsville, Ontario. I like school at lot, especially math and science. I like to play soccer, swim, ride my rip stick, jump on the trampoline, do gymnastics, and build with Lego.

I was diagnosed with type 1 diabetes when I was five and a half years old. I started taking three needles a day and poking my finger eight times per day. That's about 4,005 pokes and needles a year, approximately 20,000 since I was diagnosed. Most people will never have that many needles in their lifetime.

Now I wear an insulin pump. It's a lot better. I was nervous at the beginning, but now I'm in control. I need my mom and dad's help to make changes and to do the insertions, but I bolus for the carbs I eat. Today, I'm involved in JDRF CCTN's clinical trial that looks at timing the initiation of continuous glucose monitoring and pump therapy.

When I first got the continuous glucose monitor I thought of myself as a cyborg. Now I don't even notice I have a sensor and a site. I calibrate the sensor myself, and no one even notices anymore.

A continuous glucose monitor, or CGM, is a device for people with diabetes that provides continuous real-time readings and data about trends in glucose levels. This can allow people with diabetes to understand the level of their glucose and whether it is rising or falling, and to intervene by eating or taking insulin to prevent it from going too high or too low.

I still finger poke before I eat and I still count carbs. I always have to be careful of highs and lows with my blood sugar because I can become sick very quickly. The CGM measures my glucose levels every five minutes and is another step closer to better monitoring and better glucose control.

There is hope that one day the CGM will speak to the insulin pump to distribute the correct amount of insulin automatically. JDRF is working really hard at developing the artificial pancreas, an automated system to disperse insulin based on real-time changes in blood sugar levels the same way the pancreas does in people without diabetes.

I've been involved in three clinical trial studies with JDRF. They are trying really hard to find a cure for me and others who have type 1 diabetes. I am thankful my friends at JDRF are always searching and never giving up on finding a cure. My family and I will continue to do our part.

Thank you.

[The Chair, Conservative, Joy Smith]

Thank you very much, Maksim.

I must say you're the best group of witnesses we've ever had. Would you not agree?

[Some hon. members]

Hear, hear!

[The Chair, Conservative, Joy Smith]

Ladies and gentlemen, now I'll be calling out the committee members' names one by one, and the committee members have seven minutes to ask you questions. During that seven minutes, you have time to answer them. When that time is up, we go on to somebody else, so everybody gets a chance.

This is a very important time because people can hardly wait to ask you questions. We'll do that until 12 o'clock. Then at 12 o'clock I'll suspend the committee. Then you will leave your seat, but you can stay and listen while another panel comes and speaks to us.

We begin with Mr. Kellway.

[Matthew Kellway, NDP, Beaches—East York, ON]

Thank you, Madam Chair.

I concur with the chair that this is indeed the most interesting and inspiring panel I've had the privilege of hearing from one end of the table to the other. Thank you very much, all of you, for coming and speaking to us today. I know it has been a whirlwind tour for you, and I'm so glad we were able to make time to hear your stories and that you are able to make time to share your stories with us.

Michael, you and I are getting to be close friends now. We've seen you as recently as last Friday in the office, and I've watched your soccer video. Our chair, Ms. Smith, wants to see you play soccer, so perhaps you can send Ms. Smith a copy of the video you shared with me.

I understand you have a new feature-film-length soccer video coming out on your new dribbling tricks. Can you tell everybody how long you can keep that ball in the air, alternating feet?

[Michael Thornton]

I did 10,458 keep-ups.

[Matthew Kellway, NDP, Beaches—East York, ON]

And how long did that take you, Michael?

[Michael Thornton]

Two hours.