Mr. Speaker, I am thankful for the opportunity to speak to Motion No. 274, which essentially calls for information. Quite unbelievably, this information will not even begin to be collected until September 2012. That is 33 months since Canadians began travelling offshore for treatment. Even more unbelievably, this information will not be available for several more years. This is unconscionable, given that thousands of Canadians have already travelled for CCSVI treatments.
The motion also calls for the concerns and views of patients to be well-represented and heard. It is in fact essential that the views of patients are heard. That is why my bill, Bill C-280, calls for an advisory panel of medical experts in CCSVI, with an individual who has been treated for CCSVI to, among other things, advise the Minister of Health. My bill calls for real representation.
The reality is the government failed to hear world leading CCSVI experts and failed to hear Canadians living with MS. During this time, 800 Canadians died of MS and MS patients worsened on average by one EDSS, or disability score. It is unconscionable. Simply calling for being heard is grossly inadequate.
The questions members of Parliament must think about regarding Motion No. 274 are the following. Does this motion further advance the science of CCSVI? Does this motion do anything to ensure that proper health care is not refused to a person following treatment for CCSVI? Does this motion ensure that the Minister of Health works with the provinces and territories to ensure a comprehensive strategy for CCSVI? The answer to all these questions is no. The reality of the motion is it does nothing for patients and maintains the status quo.
In January 2012, 13 CCSVI advocacy groups, representing over 14,000 members, wrote to the Prime Minister and the Minister of Health and copied all members of Parliament, saying that Motion No. 274 “does nothing for science or for Canadians with MS and we oppose it”.
Those living with MS understand how the government has played politics with their lives. They understand that on May 2010, my colleague, the member of Parliament for St. Paul's and I were ignored when we wrote an open letter to the health minister asking for clinical trials for CCSVI and a registry. They understand that Dr. Zamboni, Dr. Simka and Dr. McDonald, the leading experts in the world on CCSVI, were ignored when they asked for clinical trials at the neurological subcommittee I founded.
Those living with MS understand that a top ranking CIHR official denied a registry in 2010 because it was outside the mandate. They understand that a top ranking CIHR official should have known what diagnosis and treatment was being undertaken in Poland in 2010, but did not because he had not done his homework, sadly, to the detriment of patients. They understand that the government failed to invite the leading international experts in CCSVI to the August 26, 2010, meeting. They understand that those who publicly criticized the validity of CCSVI were, however, allowed to participate in meetings, despite their bias. They understand that the government convened an expert group with no experts in the imaging and treatment of CCSVI and that the government failed to attend international scientific conferences, failed to undertake site visits to labs and operating theatres and blindly accepted a handful of studies.
Those living with MS understand that it was a cursory review at best by top researchers and that the government failed to review a large body of research, extending back to 1839. They understand that by the time of the August meeting, eight provinces and territories were pushing for action on CCSVI. Yet behind closed doors at the meeting there was a unanimous decision not to undertake clinical trials, despite the fact that both the presidents of the CIHR and MS Society were present and had previously been open to them and advocated for them respectively.
For over a year the process failed Canadians with MS and failed to meet the standards of the Canadian health system. It put in place a scientific expert working group with no scientific expertise or experience in CCSVI, which did not even declare conflict of interest until I pushed for it, which did not even undertake a comprehensive literature review until I pushed for it, and which analyzed interim and final results from seven studies funded by Canadian and U.S. MS societies for which we already had answers.
Finally in March 2011, 10 months after our initial request, the government reversed its position and announced a registry for MS. Collection of data will begin 33 months after Canadians began travelling overseas for treatment. Since when do scientists fail to collect data? As one Canadian neurologist who had the CCSVI procedure said to me, “If we had collected the evidence in a registry for the last many months, would we still be calling these anecdotal stories?”
Until November 25, 2011, all we had was announcements for clinical trials and a registry. Canadians with MS across this country understand the brutal, cynical politics of that week. They understand that M-274 was moved up to be debated before my Bill C-280. They understand that the motion does nothing for patients and keeps the status quo. They also understand, and are deeply offended by, the government's announcement for phase I and II trials to pre-empt this bill. They understand that it will take roughly three years to proceed with a phase III trial or a multi-centre trial with large patient groups.
In stark contrast to Motion No. 274, which maintains the status quo, my bill would call for action and accountability. It would call on the Minister of Health to convene a conference with the provincial and territorial ministers responsible for health for the purpose of establishing a national strategy for CCSVI. The national strategy would ensure that proper health care is not refused to a person following treatment, identify the most appropriate level of clinical trials for the treatment of CCSVI to place Canada at the forefront of international research, and estimate the funding necessary for clinical trials and for tracking individuals who have been treated for CCSVI. It would establish an advisory panel of experts in diagnosis and treatment.
Finally, politics continues to be played with MS patients' lives. I had my Bill C-280 moved up to be debated before Motion No. 274, as it should have been if the government had not pushed through Motion No. 274 before my bill was read in the fall.
Because the 13 advocacy groups were so afraid the government would once again play politics, they wrote to the Prime Minister, the Minister of Health and issued a press release saying that if the government moved Motion No. 274 ahead of Bill C-280, it would be playing politics with their lives.
I then invited all MPs and senators from all parties to attend a breakfast on February 14 with leading doctors treating CCSVI. I did this because this is a non-partisan issue; it is a humanitarian issue.
Those living with MS waited on tenterhooks to see what politics would be played next. The answer came on Friday, February 10 at 3:23 p.m., following the airing of theMS Wars: Hope, Science and the Internet documentary on David Suzuki's The Nature of Things.
That fair and balanced documentary included an interview with Dr. Gianfranco Campalani, a vascular surgeon who has seen marked improvements in his MS symptoms since his CCSVI treatment in 2007. He considered it unethical for doctors to deny treatment to those with CCSVI. The day after the program aired, the Minister of Health announced a briefing on MS on February 13 at 5:30 p.m. to pre-empt my breakfast on February 14 by a mere 14 hours.
Those living with MS and their families understand that this debate was never based on the science, as it should have been, but rather wilful blindness, medical politics and collusion with special interest groups. As a scientist and professor of health studies, I treated the issue as I would any scientific question. I went to the experts. I went to seven of nine international conferences and presented at three. I learned the science. Why did the government not?
I therefore beseech all MPs to do the right thing, to vote for action. MS patients say that we know what the right thing is. Let us do the right thing. Canadians with MS are waiting, getting sicker and in some cases dying.
