Mr. Speaker, I am very honoured to rise here today to speak to Bill C-280, An Act to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency (CCSVI).
It is with sadness that I speak to the bill. This type of private member's bill should not be necessary. It is a shame that the time of this chamber is being spent on something the government should have done over two years ago, had there been any leadership.
The government's handling of this file has been a total disgrace. The government has demonstrated a total failure to provide the federal leadership that would have been able to move this forward. There has been a total failure on the part of the government to listen to the provinces and territories. Most important, there has been a total failure on the part of the government to listen to the patients. It is what my colleague from Mount Royal calls “the mobilization of shame”.
The briefing Monday night was one of the worst I have attended since I have been in this place, the Minister of Health taking the time of the president of the Canadian Institutes of Health Research to demonize a private member's bill that has the support of that very organization and of so many patients across the country.
There has been a pathetic attempt by the government to disguise its lack of action on this issue in a private member's motion to make it look as though it is doing something. However, all that motion does is ask to collect a bit of information that should have been collected.
I wish the Minister of Health had shown up Tuesday morning at the amazing breakfast, I think the fourth of such breakfasts, that was put on by the member for Etobicoke North, the author of this bill. If the minister had been there to hear Dr. Joseph Hewett, Dr. James McGuckin, and the amazing patient Linda Hume-Sastre, she would have understood how much we care about moving forward immediately on these actions.
My journey on CCSVI started almost two years ago, on March 29, 2010. I had been asked to attend a patient summit, which was to hear the voices of so many patients from all of the disease entities across the country to share some principles. Ironically, I was on the panel, “Is the Voice of Patients Being Heard?” After I stepped down off the stage it was time for lunch. A number of patients asked me if I would sit at their table. Around this table were patients and family members from British Columbia who were absolutely convinced that this new liberation procedure could help them. They described people who were on their way to life in a wheelchair, on their way to being bedridden, on their way out of this world. It was so poignant.
It was interesting yesterday morning when Dr. Hewett and Dr. McGuckin said that those of us who are trained as physicians sometimes have a great difficulty keeping an open mind and looking at things differently from the way we were trained in medical school or in the kinds of treatments that we would normally prescribe or try to get for our patients.
It was quite interesting. These patients and their families explained how this procedure seemed to be helping a lot of people. At that point, they were already trying to get that treatment outside of Canada. I think the theme we will hear this evening and from patients across this country is that they want to be treated here and they want to be treated now.
What is absolutely astounding is that I came back to this place and had a casual conversation with my colleague from Etobicoke North, who had already expressed quite an interest in neurological diseases, as we all know. She had attended a conference on CCSVI in February and had been looking into this potential treatment since November of the previous year.
From that time on the member for Etobicoke North has been a source of inspiration for all of us, but mainly the daily counsel for hundreds and hundreds of patients across the country. She keeps their spirits up. All of us here are impressed at how that one member of Parliament has had such an important influence on the lives of so many Canadians.
In May of that year, the member for Etobicoke North and I as the critic for health wrote to the Minister of Health asking her to support the MS Society's request for $10 million for research into the potential cause of CCSVI. Clearly at that time there had been controversy surrounding it, but we thought that Canadians deserved the facts. We were not saying that it definitely did or did not work, but we were very concerned that the people making that decision perhaps were not listening to patients about things like fatigue and brain fog, and that people felt immediately better if they were able to tell their stories.
It was very important at that time for people to get on with actual clinical trials. That is what people wanted. They wanted trials in which they could take whatever risk there was with the procedure and have it documented afterward. We were already hearing stories of people who had gone out of the country to get the treatment after being refused treatment by their own physicians. The member for Etobicoke North asked for an emergency debate on this issue, which was declined, but there was a take note debate. The subcommittee of the Standing Committee on Health held four hearings. It heard from Dr. Zamboni himself, Dr. Sandy McDonald and a number of important experts in this area from around the world.
Four hundred people per year die from multiple sclerosis. It is extraordinary. As we heard yesterday morning, if this possible treatment is being caught up in some turf war similar to what Dr. McDonald talked about, it would be the same as having to get permission from the electrician to do plumbing work in one's house. This is viewed to be a plumbing problem, that is, a cardiovascular problem as opposed to a pure autoimmune disease, in the purview of neurologists. We are asking that all in medicine work together in these trials in the best interests of patients. That means the turf wars have to stop.
On August 20 in another letter to the Minister of Health, we asked that this issue be placed on the agenda for the health ministers meeting in September. We hoped that they would listen to one another and that the federal government would take some leadership on this. Provinces like Saskatchewan had very clearly taken the lead.
I ask all members of the House to go to the website of the member for Etobicoke North to read the speech that she delivered on December 8 and her reply to the response by the parliamentary secretary and the member for Simcoe—Grey. Members should read the letter from the Canadian Coalition for the Study of Venous Insufficiency and consider its words, “As such, we urge all members of Parliament to vote in favour of your bill”. The coalition outlines the parts of the bill and why it supports it.