Evidence of meeting #24 for Health in the 39th Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was cure.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Chair  Mr. Rob Merrifield (Yellowhead, CPC)
Chloe Rudichuk  Cure Special Agent, Juvenile Diabetes Research Foundation
Josée Goulet  President and Chief Executive Officer, JDRF Canada, Juvenile Diabetes Research Foundation
Mitchell Burke  Cure Special Agent, Juvenile Diabetes Research Foundation

3:35 p.m.

The Chair Mr. Rob Merrifield (Yellowhead, CPC)

I call the meeting to order.

This is a bit of an interruption, but also a continuation to some degree of the study we're doing on childhood obesity. We have with us people from the type 1 juvenile diabetes group who are here on the Hill today visiting members of Parliament. I understand you also had an opportunity to visit the Prime Minister for a short time this afternoon.

We are very pleased and feel honoured that you are able to come to speak to the committee and present your case. We look forward to your presentation and to asking you some questions on it.

Before we get into that I want to introduce a new member, who is actually a past old member. Hedy Fry is with us on the committee as a member.

3:35 p.m.

Liberal

Hedy Fry Liberal Vancouver Centre, BC

Just say “past member”, not a “past old member”.

3:35 p.m.

Mr. Rob Merrifield (Yellowhead, CPC)

The Chair

Yes. My eyes are getting bad, so forgive me for that.

I'd like to introduce to the committee Robert Hindle. I'll have you introduce the rest of your group and start the presentations.

3:35 p.m.

Robert Hindle Member of the Board of Directors, JDRF Canada and JDRF International, Juvenile Diabetes Research Foundation

Thank you, Mr. Chair.

Good afternoon, members of the committee. We thank you sincerely for giving us the opportunity to talk to you today.

As you know, we are holding our kids' day on the Hill today. We call it Mission Possible.

I would like to first introduce two of our special agents, Mitchell Burke from Winnipeg, and Chloe Rudichuk from Regina.

I would like to introduce Josée Goulet, who has been our president and chief executive officer for two months now. She is from Montreal and has been working part time in Toronto for the past two months.

I have been around for a long time with JDRF.

I'll now ask Chloe to start off our briefing.

3:35 p.m.

Chloe Rudichuk Cure Special Agent, Juvenile Diabetes Research Foundation

My name is Chloe Rudichuk. I am 11 years old and from Regina.

Five years, ago on Canada Day 2001, my life changed forever. On that day I was diagnosed with juvenile diabetes. Today I want to tell you about what it's like to have this disease. I've told this story many times, but I'm happy to do it today because you actually have the ability to do something about it.

My family and I really didn't know anything about juvenile diabetes. I had never even heard of it before. I didn't realize that I would have to prick my finger six to ten times a day. I didn't realize that I would need to have three to four needles every single day to keep me alive. I didn't realize that the long-term complications from juvenile diabetes include blindness, kidney disease, heart disease, and amputation.

In the beginning it was hard to adjust. I had to learn to test my blood sugar by pricking my finger. My parents had to learn how to give me insulin with a needle. We all had to learn about counting carbohydrates, what I could eat, how much, and when. It was hard for people to understand why this was so important. I look healthy enough.

I feel left out when kids bring treats for the class, because a lot of times my blood sugar is too high and I can't join in and have the snack. I have to watch while the rest of my class enjoys their treats. Because I'm a dancer, I have to be careful about getting blisters on my feet. They take a long time to heal, and as I grow older they can cause serious health complications.

When my blood sugar drops too low I feel really sick. I'm dizzy and weak and need sugar fast. I've been lucky because I have always recognized when my blood sugar was too low and have been able to treat it. People with juvenile diabetes often lose consciousness and may even have seizures if they don't treat their low blood sugar quickly.

When my blood sugar is too high I usually end up with a headache. My parents worry a lot about my high blood sugars because they're hard on my body and lead to serious long-term complications. Since I was first diagnosed I have pricked my finger almost 16,000 times. I have had almost 6,000 needles. I'd like the needles to stop.

I now want to introduce Madam Josée Goulet, president and CEO of the Juvenile Diabetes Research Foundation Canada.

3:35 p.m.

Josée Goulet President and Chief Executive Officer, JDRF Canada, Juvenile Diabetes Research Foundation

Thank you, Chloe.

Health committee members, I want to begin by thanking you very much for giving children like Chloe and Mitchell the opportunity to address your committee formally today. I'm sure it is something they will remember for a long time--as well as the whole day.

Please allow me, as president and CEO of JDRF Canada for the last two months, to also thank you for the important work you do studying and debating health issues of importance to Canadians. We all hope you will see the unique opportunity that is before us to find a cure here in Canada, and soon.

I would like to say a few words by way of familiarizing members of the committee with our organization. The Juvenile Diabetes Research Foundation was founded in 1970 by parents of children with juvenile diabetes, or type 1 diabetes. The foundation is the leading non-profit, non-governmental organization in this area and the leading advocate of diabetes research worldwide. We have 12 branches across Canada, from coast to coast, headquartered in Toronto. Our organization's success depends in large part on the hard work and determination of the children, whom many of you have heard from today, as well as on the generous support of our donors and the tireless energy and financial support of the parents, many of whom are also here today.

In the course of your work as parliamentarians you will receive compelling submissions from many groups, all of whom have great reasons for you to support causes like ours. I would only point out to committee members that no chronic disease has ever been cured, but many experts consider that of all the chronic diseases, we are closest to curing juvenile type 1 diabetes. We're this close.

For everyone, particularly children who are primary victims of type 1 diabetes, a cure will be nothing less than a fresh chance at life. For millions of adults it will mean the end of costly, painful, and life-threatening complications.

On behalf of JDRF I want to thank you, members, for your continued support of our efforts.

I would like to introduce Bob Hindle, who will explain more about the great research being done in Canada and what JDRF is currently asking from the federal government.

Bob.

3:40 p.m.

Member of the Board of Directors, JDRF Canada and JDRF International, Juvenile Diabetes Research Foundation

Robert Hindle

Thank you, Josée.

We are asking for something that is probably unique, and we readily admit we are trying to distinguish our cause of funding for diabetes type 1 research because of what JDRF has already produced.

In my conversations with some of the committee members and other members of Parliament, I did not have the opportunity to mention what I am about to say.

It has been suggested that perhaps apart from the previous history I have as a volunteer with JDRF that I discuss an issue that relates to what you have heard from Chloe and what you're going to hear from Mitchell. I say this in the context of Canada and of being a Canadian who is familiar with Canadian research results already on the books.

I too was diagnosed with type 1 diabetes as a young child. Chloe gave you a list of the complications that can arise. After 37 years, I suffered kidney failure and was on dialysis. I have first-hand knowledge of what happens to you no matter how well you control your blood sugars, how regularly you take your exercise, and how attentive you can be. I spent four hours a day, three days a week hooked up to a machine to stay alive. I won't dwell on the bad news. I had, among other members in my family, one particular brother who tested positive and was accepted to donate a kidney to me. The day before that transplant surgery was scheduled, a compatible pancreas became available within the Montreal region, where I live. On April 13, 1999, I became the first Canadian to successfully receive a double transplant of a kidney from a living donor and a pancreas at the same time. So for seven and a half years, I have had personal knowledge of living on the other side of the line without the need for constant finger pricks, blood sugar monitoring, and insulin injections.

My point in telling the story is that today, this year, the Royal Victoria Hospital, where that surgery was done, has now done 16 pancreas and kidney transplants. They expect to do 25. That is as a result of Canadian research and Canadian medical expertise. When I was the first in Canada, I was the third in the world, so let's keep in mind that Canada has always proven to be a leader in medical and health research related particularly to type 1 diabetes and its complications.

I think that we must keep that in mind, because we will also unabashedly wrap ourselves in the Canadian flag, not because it's a wonderful emotional argument to our federal government, but because there are provable successes out there.

I would ask you, please, to ask your staff to double-check what we are saying to you, from what the Globe and Mail pointed out in their list of Canada's ten best things, Banting and Best's discovery of insulin, to, since then, Canadian research into type 1 diabetes. I have had the occasion to meet people from other countries through JDRF, many of whom have trouble speaking English or French. While perhaps I can't understand what they say most of the time, they can pronounce very well two words - “Edmonton protocol”. Dr. James Shapiro and his medical team have made fantastic advances and continue to do so in islet transplants. Since then almost every year in Canada, Dr. Leo Behie, Dr. Lawrence Rosenberg, Dr. Derek van der Kooy.... There must be a reason why Canada on a pro rata basis is head and shoulders above the world in type 1 diabetes research.

That is why we are proposing something that is unique as we address the health committee to discuss funding for an organization like ours with the federal government in Canada. We're not simply asking for a handout of $125 million. We're asking for a partnership. Please come to the table and sit down, and let's look at what a research path could look like for type 1 diabetes. We are far beyond basic research.

One of the new tag lines of JDRF is “fund the gaps”--in other words, how we continue to make these quantum leaps. The business strategy of JDRF International--and I emphasize international, because we fund research in at least 37 countries around the world--is based on getting tangible results within five years.

JDRF goes where the best research is. We continue to strive to increase our fundraising efforts every year--and we have done very well at it, I may add. We have always been net importers of research dollars. The international research analysis and allocation has resulted in this recognition of Canadian talent, of proven Canadian success, and of the potential for what we call a “made in Canada cure”, which started back in the 1920s with Drs. Banting and Best.

Those are the two points I would ask you to take from our presentation and our requests of you.

With that, it is my pleasure to introduce to you Mitchell Burke, who has a few words of his own.

3:45 p.m.

Mitchell Burke Cure Special Agent, Juvenile Diabetes Research Foundation

Thank you, Mr. Hindle.

My name is Mitchell Burke, and I am from Winnipeg. I am 11 years old. I was diagnosed with type 1 diabetes on May 14, 2004. My life took a big turn that day, one that I will never forget, nor will my parents.

The hopes and dreams of living a normal childhood and adulthood are gone. I had to grow up very quickly. I used to think that diabetes was just part of my life, but looking at it more closely, I realize it is my life. I wouldn't be here today if it wasn't for insulin, needles, finger pokes, counting carbohydrates, and watching my daily activities. Even with all this work, I am constantly worrying about the highs and lows of my blood sugar and the life-threatening complications associated with this disease.

When people ask me what the cure would mean, it would mean freedom to live my life free of complications, and freedom to be a normal person without the worry of what I am eating or what activity I would like to do. It would mean the freedom to grow old and follow my dreams.

Without JDRF, we wouldn't be this close to a cure. We are here today to spread our message to all parliamentarians that a cure is close. With your help, you can make it happen. The fact that you are all here today supporting and encouraging us gives us hope that our lives can change. A made-in-Canada cure for juvenile diabetes is a mission possible, but only if people like yourself make it your mission to ensure that the federal government increases research funding for this disease.

Thank you for giving us the opportunity to appear before you today. Your support and dedication to our cause is greatly appreciated. Accept the mission to help us find the cure for type 1 diabetes.

Thank you.

3:50 p.m.

Mr. Rob Merrifield (Yellowhead, CPC)

The Chair

Okay. Thank you very much.

We'll open the floor to the committee for questions. We will question back and forth and try to learn a little bit more about juvenile diabetes and your work and your requests.

We'll start by opening the floor to Ms. Dhalla. You have ten minutes, unless you're splitting your time.

3:50 p.m.

Liberal

Ruby Dhalla Liberal Brampton—Springdale, ON

Thank you very much.

I want to really thank Mitchell and Chloe for telling your stories and taking the time to share your stories with us.

I had a couple of young students, as well, who have been affected with diabetes and who came to speak at my office. I was really touched to hear what they go through on a day-to-day basis.

I think there's a responsibility with all of our members at this table to ensure that there is the funding and the investments and the resources for research, and to ensure that we, as I believe Robert said, can work collectively in a partnership to come up with a cure to help children throughout Canada and the world.

I have a couple of questions. First of all, where does the funding for the association come from? Are there any research projects under way right now with the Canadian Institute of Health Research that are related to some of the issues you want to pursue?

3:50 p.m.

President and Chief Executive Officer, JDRF Canada, Juvenile Diabetes Research Foundation

Josée Goulet

We will both speak, I guess.

Most of the funding we have is through fundraising activities or events. We've raised several million dollars per year. At the same time, this is money that is pooled world-wide, because we belong to the Juvenile Diabetes Research Foundation International. As Bob pointed out, there is a group of decision-makers or researchers who allocate that money for different projects, depending on the submissions and so on.

Bob can correct me if I'm wrong, because it's been two months and a lot longer for Bob, but I believe we in Canada received more than $10 million and we raised about $7 million, so we're net importers, in that they find that the research expertise is there. What's good about JDRF International is the way it functions: it's not territorial, and they will put the money where they believe there's the most potential to find a cure world-wide. If there is more in Canada, the U.S., or Israel, and so on, they will do that. There's a committee, and we have Canadian representation on these committees. They determine allocations every year, five-year grants and so on. I believe that's how the process works.

Bob, I don't know if you want to add anything.

3:50 p.m.

Member of the Board of Directors, JDRF Canada and JDRF International, Juvenile Diabetes Research Foundation

Robert Hindle

That's a fairly accurate description for the first question.

Maybe I'll move on to the second question about working with CIHR. We receive no funds from CIHR. In the past year, CIHR has funded $6.6 million in research for type 1 diabetes. JDF is currently working on a first potential partnership with CIHR, but the answer to your question is none.

3:55 p.m.

Liberal

Ruby Dhalla Liberal Brampton—Springdale, ON

There was an announcement recently made by the minister of $348 million into CIHR, I believe. Will any of that money be allocated to research for type 1 diabetes, that you know of?

3:55 p.m.

Member of the Board of Directors, JDRF Canada and JDRF International, Juvenile Diabetes Research Foundation

Robert Hindle

To be honest with you, I don't think we received any details on what will happen. The honest answer is that it's premature for us to try to answer that.

3:55 p.m.

Liberal

Ruby Dhalla Liberal Brampton—Springdale, ON

To the kids, either Chloe or Mitchell, you mentioned that you must have your sugar levels monitored throughout the day. Perhaps you could share with the committee your experience of what that's like, and also, if you know of some of the costs that are associated with you having to buy the type of equipment to do so.

3:55 p.m.

Cure Special Agent, Juvenile Diabetes Research Foundation

Chloe Rudichuk

During the day today my blood sugar level was pretty good. I had it recently tested before the meeting and I was high, at a level of 16.4, I believe. The normal range for me would probably be between five and nine, so....

3:55 p.m.

Cure Special Agent, Juvenile Diabetes Research Foundation

Mitchell Burke

My readings weren't that good today. I was mostly high and I had a low. My normal reading should be between four and seven.

3:55 p.m.

Liberal

Ruby Dhalla Liberal Brampton—Springdale, ON

How much does your equipment cost that you have to buy to get tested? Could you share that with the committee?

3:55 p.m.

Cure Special Agent, Juvenile Diabetes Research Foundation

Chloe Rudichuk

I think for a couple of boxes of 100 strips it costs about $25. I'm not sure about the syringes or the lancets, but I think that's around what the strips cost.

3:55 p.m.

Cure Special Agent, Juvenile Diabetes Research Foundation

Mitchell Burke

The meters can cost a lot, but they usually don't because you can get free things. For example, if you buy a box of 200 strips you can get a free meter and that kind of thing.

3:55 p.m.

Liberal

Ruby Dhalla Liberal Brampton—Springdale, ON

Thank you.

3:55 p.m.

Mr. Rob Merrifield (Yellowhead, CPC)

The Chair

Thank you.

Ms. Keeper, you have about four minutes.

3:55 p.m.

Liberal

Tina Keeper Liberal Churchill, MB

I would like to also thank everybody who has participated in the lobbying efforts today and for your presentation. I as well had a presentation from some of the young people and family members here today. It was very educational. I applaud you young people for the professionalism and the level at which you made your presentations in the office. It was fantastic and very educational. The courage it must take to do this is outstanding, so I thank you.

Mr. Hindle talked about a clear research path, or made reference to a direct research path. Might I ask you about that, because it was in the presentations that the youth made today. They referenced a direction in which JDRF is moving.

3:55 p.m.

Member of the Board of Directors, JDRF Canada and JDRF International, Juvenile Diabetes Research Foundation

Robert Hindle

Two years ago JDRF moved from the concept of a cure to identifying what are called six cure therapies, or therapeutic cures--it works either way--because of the fact that research has shown that there will not be a single eureka moment. There will be steps along the way to achieving what we called a cure when we were back in the black hole of basic research.

Also, for people in different stages of diabetes, there will be different cures. They include the restoration of normal blood sugar that could come, for example, through islet transplants, which currently have other issues and are not the simple answer to that. For people who have islet transplants or for people like me who have a new pancreas, they don't eliminate the process of attack by our autoimmune system, the T cells. Therefore, recurrence is an issue.

That leads to prevention, which is a third area.

I'm just giving this as background to what you asked, which was the research path. There is nothing clear in terms of what the end result will look like, because it's hard to get scientists to ever talk about things like that, even behind closed doors.

But there is very definitely a direction. It's somewhat like knowing what you're looking for and seeing it behind the glass but having to figure out how you break the glass to get there. The steps that will allow us to proceed to the next stage have to be identified, and then the stages to the end have to be identified.

4 p.m.

Liberal

Tina Keeper Liberal Churchill, MB

Could I ask you about one of those six targets you're talking about? It is the islet transplant--is that right?