Health Committee on Oct. 31st, 2006

[Robert Hindle]

Yes.

[Tina Keeper, Liberal, Churchill, MB]

There are problems with that for youth. They mentioned in their presentation to me that islet transplant is not an option at this point for children. Could you explain that a little bit?

[Robert Hindle]

Islet transplants were first attempted back in the 1970s. Dr. Alex Rabinovitch, also from the University of Alberta, took them on as a serious research project in 1987 or 1988, and never achieved a success rate that reached 10%.

What Dr. James Shapiro, Dr. Ray Rajotte, and Dr. Jonathan Lakey did was bring that up to a level of 80% by changing the immunosuppressing mixture, and that has resulted in a higher than 80% success rate after one year. What happens is that the success rate declines drastically over five years--so of course it took until 2005 before there were reviewable numbers--and therefore more work is required on that.

Is it because the T cells are coming back to attack the new islet cells? We don't know. Because it's a transplant, it also requires exposure to immunosuppressants, which is a risk not worth putting on the heads of young children and otherwise healthy diabetics. Those are the issues that are currently being dealt with through JDRF-funded research.

And I may add that because of the success of the researchers at the University of Alberta, 12 different protocols, around the world, copying Edmonton, which will be slightly different, have been tried or put in place. So we're trying to advance the timeline by having different researchers try different protocols and share information.

[The Chair]

Thank you.

Madame Gagnon, you have five minutes.

[Christiane Gagnon, Bloc, Québec, QC]

Thank you, Mr. Chair.

I would like to thank the children and the parents. I know that being here today has meant a lot of time and energy, as well as a willingness to tell us the story of your lives. When children have a disease, it affects the whole family. We know that day-to-day living is not easy for these families, as we heard this morning. They chose a good way to reach us, describe their everyday experiences and explain how they live with this illness and the diagnosis.

You have raised this issue with several governments—not just the federal government for research, but also other governments for school protocols. This morning, one girl told us that it is not easy for her to do her tests and take her medicine at school and she talked about her teachers' understanding of the disease. Although I realize that this matter falls within the purview of the provinces, including Quebec, I would like the children to tell us what kind of standard protocol they would like to see to provide guidelines for supporting children in terms of their treatment.

I have a second question. Earlier, I asked Ms. Goulet what she thought the best question to ask would be. I think she answered in part or perhaps in whole: What would you do with more money, and what would it enable you to accomplish?

I am not sure I understood your remarks, but it seems to me you said you would like to see legislation on research. Did I understand correctly, or did I misinterpret because people around here are always talking about legislation? I may have misunderstood your remarks, but I think you said something about research legislation or spending more money on research. I think you were saying we need to spend more money on research.

[Josée Goulet]

I said that we need to spend more money on research.

[Christiane Gagnon, Bloc, Québec, QC]

Okay. I misunderstood and I apologize.

[Josée Goulet]

If legislation would give us more money for research, maybe that is what we need, but—

[Christiane Gagnon, Bloc, Québec, QC]

I think you were very clear about how important it is to act now. You are sure that with enough funding, a cure will be found within five years. Can you tell us a bit more about your short-term objectives? It is not easy to find cures for degenerative diseases within five or ten years. I know because my daughter has multiple sclerosis. Research in these areas is very difficult. I would be very happy if a cure for type 1 diabetes could be found.

[Josée Goulet]

I will answer both of your questions.

You mentioned a protocol for schools. Awareness programs for schools happen more on a local level. When children are diagnosed with type 1 diabetes, juvenile diabetes, their parents need to be educated of course, but when the children go to school, as Chloe said earlier, everyone around them needs to be aware of what is going on, of what could happen, and so on. I would call this a school program, because in some schools, there is more than one child with type 1 diabetes. We have to work with local boards. We really have to do this on a local level. I would not call it a protocol; rather, it is a way of working with school boards and individual schools to educate them about the child's illness. We have to tell them that it is not contagious, and we have to educate classmates, teachers and parents of the other children so that everyone knows what is going on. I would even go so far as to say that in some places, schools take this so seriously they hold fundraisers to help these children. That is how I see school programs.

With respect to research and timelines, Bob can tell you more about that. What I would say is that research is research. When I met Dr. Shapiro to discuss the Edmonton protocol, I asked him right away if we would have a cure in two years, or five, or ten. He did not want to give me an answer because, he said, that would not be very professional. Research is sometimes full of surprises. He did say that he could see the light at the end of the tunnel. I found this very encouraging, and I heard something similar from someone else when I went to New York after that. He said that he could not see that light before now. I think that is very interesting. I met an extraordinary man in New York, Dr. Richard Hansell, who said:

“If there's one disease that is cured in our lifetime, it will be type 1 diabetes.”

He has already done something similar for another disease. This is very encouraging. With more money, we can do more research and we can probably reach our goal faster. That is the underlying logic. As Bob said, we have a very strong international team that can identify which horses are likely to get to the finish line faster. That is one way to describe the situation.

[The Chair]

Thank you very much.

Mr. Fletcher, you have five minutes.

[Steven Fletcher, Conservative, Charleswood—St. James—Assiniboia, MB]

Thank you, Mr. Chair.

Thank you very much to the panellists, especially to the kids, for coming here today. I'd like to thank my colleague Mr. Batters for suggesting that you come to committee. This has been quite a day for everyone, I think.

Everyone, regardless of their party, is very concerned about this issue. As chair of the juvenile diabetes caucus, and Ruby Dhalla is on the committee, I think all of us, including Dr. Bennett, Madam Gagnon, Penny Priddy, Dave Batters, and Pat Davidson, are involved outside this committee on this issue. We are very concerned.

I have two questions, one to Mitchell and the other to Madame Goulet and Robert.

First, at lunch today, Mitchell, who is from the great province of Manitoba, gave me a poem. I'd like to just read it into the record, if that's all right. I think it speaks a lot to the challenges that are faced.

Here is The Cure, by Mitchell Burke, special agent:

Happiness, Freedom, no more pokes
Normal like other kids,
And no more stupid jokes

Happiness, Freedom, no more pain
L - shots and N - shots
Washed down the drain

Happiness, Freedom, the silly questions all gone away,
No more frustration,
And treated normally for one whole day

Happiness, Freedom, no more lows
No tablets to chew,
No more silly diabetes woes

Happiness, Freedom, no more testing
No meter to carry,
And a lot more resting

Happiness, Freedom, when there's a cure
Back to normal and happy
And no diabetes stuff to endure.

Mitchell, I was caught by some things you said at the start of your poem, such as “no more pokes”, and “no more stupid jokes”. Can you explain to us the stigma here, or the attitude of your classmates and friends, how they challenge you on this issue, and what we can do as a society to create more understanding about the challenges you face?

I also have a question for the older people around the table. This committee is going to be reviewing the assisted reproduction act regulations that deal with issues around research, specifically around stem cell research. I wonder if you could explain JDRF's position on stem cell research.

Mitchell, and then Madame Goulet.

[Mitchell Burke]

What I mean by the joking is that sometimes some of the kids in my class ask questions about why I have to poke every time, and they make fun. They go, “Pokey Fingers”, or “Black Dot Fingers”, and all that.

And what I mean about the pokes is the lancets going into your fingers, and the needles.

[Steven Fletcher, Conservative, Charleswood—St. James—Assiniboia, MB]

Is there anything we can do to make them understand?

[Mitchell Burke]

I don't know.

[Steven Fletcher, Conservative, Charleswood—St. James—Assiniboia, MB]

And on the stem cell research, Madame Goulet?

[Josée Goulet]

Robert is going to take that one. I have the formal answer, but he will be able to give that answer in more detail.

[Robert Hindle]

First of all, seeing that we have this unique opportunity that you've granted us, I'd like to be very practical in the answer. JDRF's official position on stem cell research is that we do not want to see any areas of potential research leading to a cure be cut off. We recognize the issue that everybody has with embryonic stem cell research. What we're saying is that adult stem cells have yielded great potential as well. You folks are the parliamentarians who have to make those decisions. We are in agreement, and always have been, with the Canadian position. We made that position clear prior to the passage of the current legislation.

I'd like to add one further point, if I may. Without the concept--the word is “concept”--of cell regeneration, which came from this huge time-bomb of an issue called stem cell research, our researchers did not have the ability to think of the body regenerating its own ability to take care of itself, if I can put it that way. What was not known before the area of stem cell research was first delved into is that the pancreas in fact still produces islet cells, and those very few islet cells, which are not sufficient to take away type 1 diabetes from any of us who have to take insulin, may be capable of regenerating themselves.

In fact, at our JDRF research centre in Canada there is currently research going on in Montreal on a very specifically identified portion of the islet that seems to be the button you push to make islets replicate. The goal of that research is to make someone's own islets reproduce within their own bodies. That is a step beyond what you've referred to, Mr. Fletcher, which is stem cell research. I would just like to point out already what tangible research progress has resulted simply from the idea that stem cell research has been carried out.

[The Chair]

Okay, thank you.

Ms. Priddy, you have five minutes.

[Penny Priddy, NDP, Surrey North, BC]

Oh, thank you.

Thank you to all of the panellists.

I'd like to ask Mitchell and Chloe both, what is the hardest part for you of walking every day with this disease, including getting wakened up in the night? That's one thing I didn't realize, that you have to get tested during the night, which would be pretty sleep disruptive if you have to get up for school in the morning. The kids I talked to today said yes, they all wake up; they don't sleep through it.

What's the hardest part? And a bit like Mr. Fletcher's question, what is it you would like your classmates to either do or understand about you?

[Chloe Rudichuk]

I'd say the hardest part is when kids bring treats to school, and testing and having my blood sugar too high to actually enjoy the treat with the rest of them--just for them to understand that I can't have this some of the time, and for them to take into consideration to call the night before or let me know so that I can raise or lower my insulin accordingly so that I can have the treat along with the rest of the class.

[Penny Priddy, NDP, Surrey North, BC]

Okay. Does the teacher ask for sugar-free snacks or treats for everybody when you do treat day?

[Chloe Rudichuk]

No.

[Penny Priddy, NDP, Surrey North, BC]

Okay. One of the young people talked about that today.

Mitchell.

[Mitchell Burke]

The stuff that I find hardest is when I'm in the middle of a sports game or something, having to stop and do the test--the needles and all that.

Back to what Chloe said about the snacks, they should try to use less sugar, sweeten them without real sugars, use Splenda and all that. They should do that--and call, too.