moved:
That, in the opinion of the House, the Minister of Health should continue to work collaboratively with Statistics Canada, the provincial and territorial cancer registries, and key stakeholders towards the ultimate goal of creating uniform national standards and guidelines for the surveillance of all malignant and benign brain tumours, including data collection, analysis and reporting.
Mr. Speaker, it is with a great deal of pride and emotion that I stand today to talk about this private member's motion. It identifies a gap in Canada in research on brain tumours, especially benign brain tumours.
There is a gap in the information gathered in that there is no consistency from province to province and territory to territory. There is no opportunity for comparisons of environmental, geographic, hereditary or lifestyle causes of brain tumours.
We have definitely focused on this as a gap in research and we are asking the government to fill that gap and provide consistency with research and record-keeping right across the country, as has been done in other countries, while many other countries are working to establish the same standard.
First I want to speak to how this happened to come to my attention. Two families in my riding had children afflicted with brain tumours. They came to my office seeking help in a number of ways, including help in raising public awareness or seeking additional research and access to assistance for their predicament, which is most troubling and most difficult to handle.
In 2001, Allison and Wanda MacDonald came to me in my office in Truro, Nova Scotia about their son Matthew, who had passed away the year before. Matthew was diagnosed with a brain tumour at the age of 11 and died at the age of 14. I did not know Matthew, but everybody I talked to said that he truly was an inspiration. I understand that he visited Parliament and was here during his short life. He was named an IWK champion, that is, an Isaac Walton Killam champion, for his positive attitude and his great outlook while he was a patient at Isaac Walton Killam Hospital in Halifax. It is my understanding that he won everyone's heart.
Matthew's father became the chair of the Brain Tumour Research Assistance & Information Network, better known as b.r.a.i.n.child Maritimes, and went to work to try to help other parents and other victims of this affliction.
A few years later, another family came to me. Jennifer and Alan Dempsey from Amherst came to me about their son Brandon. Brandon was diagnosed at the age of four and has had several operations and chemotherapy and radiation. At a young age, he has been through everything that one can possibly imagine. He is now 12. He is in grade seven and has an 88% average. He is doing great. He is enthusiastic and courageous and he too is an inspiration to all of us. If I were allowed to say so, I would point out that he is in the gallery, but I am not allowed to say that, so I will not.
Jennifer, Brandon's mother, has assumed the chair of b.r.a.i.n.child Maritimes. I am so proud that both of these families had the courage, commitment and perseverance to take on this cause after having been through this. I am so glad that we in this House are going to be able to help them with this motion, if it passes, and I sincerely hope it does.
Jennifer and Alan began their eight year battle to help Brandon, but what has happened is that their effort to help Brandon has expanded a lot.
They came to my office. I did not know what to do. I did not know how to help them, but I wanted to. We had a staff meeting and decided that our office would do everything it could to help the Dempsey family and to see if we could help Brandon with his challenges.
We started to gather information. We did what we could. My assistant, Lorne Berndt, who always exceeds expectations, said, “Let us do a private member's bill”. I said that was a good idea, not thinking that it would get drawn very soon, and maybe not ever, the way things go, but here we are. It was drawn and here we are with a private member's motion and an opportunity to help.
The impact has been astounding. We have not broadcast this in any way, shape or form. This was focused on trying to help the Dempsey family and the MacDonald family and victims in our area, but what has happened is that we have had responses from all over the country. We have had responses from the United States, Australia, Germany and Britain. The response to and support for this very simple private member's motion have been absolutely incredible. It is a very simple motion asking the government to gather up statistics and to do it on a national basis with national standards.
I want to use the words of others, because I believe they are more meaningful than anything that I could ever say. I have divided them into just some of the statements. We have received hundreds of letters.
I am going to go through a few lines of a few of the letters to give the House an idea of what we are receiving.
Here is one line from a letter from Steve and Melodie Northey in London, Ontario: “As a father who lost his 8 year old daughter to a brain tumour and co-founder 25 years ago of the Brain Tumour Foundation of Canada, I applaud your efforts” and he says he supports this cause.
This is from Natalie TeBrinke of British Columbia, who says: “There have been three people living within 1/4 mile of my house who have been hit with brain cancer. I'm the only one still alive. We need to have answers”.
I think we owe them answers.
I have one from Joseph Baldanza of Toronto, who says: “I am part of a family that has lost one member to a brain tumour and 2 others have been diagnosed with different types of brain tumours”. He says that we need help.
Sherry Fleming from Dartmouth wrote: “I am the mother of a child who is a brain tumour survivor!...I am not confident that all is being done that can and should be done for prevention and treatment of these tumours”.
I hope we can help Sherry.
Joanne Morrison from Mississauga wrote: “My husband Guy was diagnosed with a malignant tumour in December 1997 and passed away from this terrible disease in March of 2002”.
Another letter states:
--I have survived since my 2001 diagnosis of a malignant brain tumour.
I was an active, healthy 43 year old wife, mother, and small business operator... As a family, we continue on our healing journey. The doctors have told me it is only a matter of time before the tumour returns.
She totally supports our efforts with Motion No. 235.
I even have a letter from Dr. Thomas Chen of Taiwan. I am sure some members know this man. He emailed me and said that his sister was recently diagnosed with a brain tumour and their family is totally devastated and stressed to hear it. He says, “We are sure that all Canadian citizens...and even the world would support you”.
Those are just some of the letters we have had from the families and the victims.
Now I want to read for members a few letters that doctors and people in the health care industry have written to us.
Here is a very poignant one. Dr. Michael Cusimano emailed me two or three times. He is a neurosurgeon at St. Michael's Hospital in Toronto. He said:
Dear Mr. Casey:
As a neurosurgeon who deals with a large number of these patients and their families, and someone who would like to study the causes of these tumours in our communities, I applaud this move.
The foresight you have shown in moving this forward will advance the hope for thousands of patients. I hope that this will be the first of many advances for these patients who are often most disenfranchised members of our society because of the nature of their tumours.
He is referring to benign tumours. He went on to explain that in a later letter.
We have had letters from all across the country and from medical facilities everywhere. They are totally supportive of this motion.
One from the B.C. Children's Hospital states: “As the director of the pediatric neuro-oncology program BC, I applaud your efforts” and he says to please push on.
A letter from Princess Margaret Hospital in Toronto states: “As the Administrative Secretary of the Pencer Brain Tumour Centre at the Princess Margaret Hospital...I am writing to express my strong support”.
A letter from the Health Sciences Centre in Halifax at the Queen Elizabeth II Hospital states:
I am the Brain Tumour Coordinator at the Queen Elizabeth II Health Sciences Centre in Halifax...As a neuro-oncology nurse who deals daily with the devastating effects the diagnosis of brain tumour has on patients and their families, I applaud your efforts to promote a national, standardized approach to the collection of the...information....
At the University of Calgary, the Calgary Health Region Foothills Medical Centre said the same thing in a letter written by an oncology neurosurgeon and cancer researcher.
These people are busy people, but they see the need.
One letter really is quite amazing. It is from the Princess Margaret Hospital in Toronto and states:
We are writing today to offer our support of your Private Member's Motion M-235.
The passing of Motion M-235 by the House would be a very positive step toward the creation of uniform national standards and guidelines for the surveillance of all malignant and benign brain tumours. This valuable data will be of great assistance to us, and our colleagues around the world in directing future research into treatments for these devastating diseases and ultimately finding a cure.
This letter was signed by five doctors: Dr. Warren Mason, Dr. Barbara Ann Miller, Dr. Mary Elliott, Dr. Normand Laperriere, and Dr. Cynthia Menard. I am so grateful to them for taking the time to do this.
Another letter came from Australia, from Denis Strangman, chair of the International Brain Tumour Alliance. He said that he had just returned from Australia and the New South Wales cancer registry has decided to count benign brain tumours in all of its information. That is exactly what we want to have done here.
I want to thank the doctors who took the time to send me my last batch of letters.
This letter is from the Brain Tumour Foundation of Canada. Every director of the board sent me a letter, but here is one of them. It states:
I am writing to express my strong support...As a neurosurgeon and Vice-Chair of the Board of Directors of the Brain Tumour Foundation of Canada...This information may help patients and families to access the resources they so desperately need.
I received a letter from Dr. David Colman, Ph.D. from the Wilder Penfield Institute at McGill University and the Montreal Neurological Institute. He says:
As Director of the Montreal Neurological Institute and Hospital at McGill University...This motion will help us answer questions about the incidence, best treatment practice and outcomes for brain tumour patients...
As a coincidence, Dr. Wilder Penfield operated on my grandmother decades ago when she went blind. Dr. Wilder Penfield operated on her and restored her sight somehow through brain surgery. She is long gone, but it was such a surprise to get this letter and to have that memory revived.
I have letters of support from the Robarts Research Institute in London, Ontario, the Algoma District Brain Tumours Support Group, the brain tumour research and assistance network at the IWK Health Centre in Halifax and the North American Brain Tumour Coalition in the United States.
This is a letter from Dr. Dr. Cusimano. He said, and this is the key:
It is extremely important to realize that the word “benign” is not entirely appropriate when it comes to brain tumours....This work represents a critical first step towards making meaningful progress that will not only have ripples throughout Canadian society but also help those with brain tumours elsewhere by the new knowledge, research and awareness it will raise.
Those words are far more effective than anything I can say. I ask members in the House to support the bill. It will do nothing but good and will help a lot of people, young people, old people, people who have no place to turn now. This will provide them with a great deal of tools and research ability that they do not have.
I do not want to finish without thanking Jennifer and Brandon for their incredible contribution to this cause and for their dedication and Allison and Wanda MacDonald, who lost their son Matthew and who are still working on this cause to raise attention and public awareness. They have put the spotlight on this gap in research and we are all very grateful for them.
I want to thank all those hundreds of people and doctors who have so surprisingly written me and our office with letters of support, all the organizations which supplied us with the details. I want to thank the Minister of Health who has supported us 100%.
I want to thank the Prime Minister for taking the time today to meet with Jennifer and Brandon. It meant so much to them and so much to us. He took the time to invite young Brandon to his office. He chatted with him and talked about what he had gone through in the way of treatment. He also asked how he was doing in school.
I want to thank all the MPs in the House today for listening to this and for their support. I want to thank my staff especially Lorne Berndt for his dedication and great work drafting this.
In closing, I will read a quote by Jennifer Dempsey, Brandon's mother, from the Amherst Daily News today. She said
When I first started on this I was doing if for Brandon, which was rather personal and selfish of me, but I believe this is going to help people all across Canada and in other places.
For Jennifer and Brandon, they already have helped so many people. They have done a great job and we are all very grateful for their persistence and determination.
