Dear Mr. Carrie
I read with incredulity and severe disappointment your speech in the House of Commons regarding Bill C-280, Dr. Kirsty Duncan's private members bill to establish a national strategy for Chronic Cerebral Spinal Venous Insufficiency(CCSVI).
As president of the CCSVI Society of Alberta, I have followed this issue closely since the initial media coverage in 2009. I come from a family where Multiple Sclerosis(MS) is very prevalent. I lost my father and two aunts to MS. My sister and my cousin have MS. Out of 30 people descendant from my paternal grandparents, 5 have MS or had MS and are since deceased. Both my sister and my cousin have travelled as medical refugees to foreign countries to receive CCSVI treatment. Both are better, my sister is dramatically better.
I have copied some of your comments and statements from Hansard and pasted them into this message in italicized text. My comments follow in bold text.
This is why we are committed to advancing our understanding of this complex disease in order to develop the most effective treatments and, ultimately, a cure. While CCSVI treatment has not been proven to 'cure' MS, it has been proven safe in international studies that have been published in reputable peer reviewed journals. There is also a myriad of published research indicating the efficacy of CCSVI treatment. In general, this government's approach to what will probably go down in history as the greatest medical discovery since insulin has been confused and indeed corrupt.
The member for Etobicoke North has introduced Bill C-280 to legislate government action to establish, in collaboration with the provinces and territories, a national strategy on the CCSVI procedure. I need to stress that our government has already acted on a number of the initiatives proposed in the bill. Nonsense! Your government has dithered, waffled and spouted hot air. Announcements do not equal action!
This past summer, the Minister of Health announced the establishment of a clinical trial on the CCSVI procedure. The Canadian Institutes of Health Research, or CIHR, is leading this federal initiative. In the coming weeks, CIHR will implement a rigorous and internationally peer-reviewed competition to select the team that will conduct this important research. To waste time and money conducting a Phase I clinical trial now, given the state of international research, is criminal and an obvious attempt to delay the inevitable. Why? Is it so the MS industry can continue to profit from the suffering of others?
Our government has also been pleased to see the great interest that several provinces and territories have expressed in working with our government on this very important clinical trial. On that note, key stakeholders such as the Canadian and U.S. MS societies have also confirmed their commitment to collaborate on the proposed trial. There are thousands of Canadians with MS shouting "the MS Society does not speak for me!" Is this government listening? I would suggest not.
It is important to understand that the decision to move forward with a clinical trial must be based on scientific evidence. The CIHR scientific experts have recommended moving forward cautiously with a small clinical trial that would test the safety of the CCSVI procedure. Some people argue that the CCSVI procedure is a safe medical procedure. They have called on our government to move faster with a clinical trial on larger groups of patients. If the decision making process were truly based on scientific evidence, treatment and research would have commenced in Canada long ago. The problem is that the CIHR 'scientific experts' are not expert on CCSVI or the treatment of veins. The CCSVI procedure is venous angioplasty. In general, venous angioplasty has been proven as very safe. The risks are minimal and acceptable. As a treatment for CCSVI, venous angiplasty has been proven safe in research projects n the USA and Europe. This government's efforts to reinvent this wheel will kill many MS patients and cause unnecessary suffering in others.
We have to listen to what the experts have said on this matter. Experts from around the world are advising us to move cautiously. Researchers, including Dr. Zamboni himself, have called for further research on the safety and efficacy of the CCSVI procedure. A multidisciplinary panel of experts concluded at the June meeting of the United States Society of Interventional Radiology that there was not enough evidence on the specific parameters required to run a large-scale trial on the proposed procedure. Yes. Listen to the experts, but listen to what they are saying today, not there comments from one or two years ago that have now been superceded by events. There is more than enough evidence to procede with an accelerated Phase II/III trial that involves treatment of a large patient population and tracking the outcomes.
We also have to keep in mind that many Canadians have experienced complications following the CCSVI procedure. As indicated in a recent publication by Dr. Cal Gutkin from the College of Family Physicians of Canada, “Endovascular treatment is not without risk.” Hemorrhage and other complications have been reported. All medical procedures involve risk. The key question is: Do the potential benefits outweigh the risks? Does Dr. Cal Gutkin perform venous angioplasty? Why don't you quote a physician who has actually performed angioplasty? Has anyone considered the risks of doing nothing in the case of a patient with a progressive form of MS?
Two Canadians who underwent the CCSVI procedure abroad died following the medical intervention. What would the outcomes have been if these people had not been turned away from Canadian hospitals as a punitive measure for taking charge of their personal health?
In this regard, I am very pleased that last month the Minister of Health and Dr. Alain Beaudet, president of CIHR, announced that CIHR is ready to accept research proposals for the phase I and II clinical trials on CCSVI. The request for research proposals is available on CIHR's website.
The second requirement outlined in Bill C-280 is to track MS patients who undergo the CCSVI procedure.
Our government, in collaboration with the provinces and territories, CIHR, the Canadian Network of MS Clinics and the MS Society of Canada, is already developing a Canadian MS monitoring system. This important initiative will provide individuals living with MS and their doctors with information to better understand this horrible disease. Why has this taken so long? A great deal of evidence is lost. In addition, many Canadians with MS who received the CCSVI treatment abroad will likely refuse to participate without reimbursement of their treatment costs. The anger at this government's handling of the CCSVI file is extreme.
As I already mentioned, Bill C-280 is also calling on the federal government to establish an advisory panel to advise the Minister of Health on the medical procedure proposed by Dr. Zamboni. Our government has already established such a panel. For a plumbing problem (veins) requiring a plumber (vascular specialist) your government has assembled a panel of electricians (neurologists). To make matters worse, your electricians are so firmly entrenched in another paradigm (auto immune) that they are ignoring any evidence, no matter how compelling, that was not produced by a like minded peer.
Let me assure the House that we have already established strategic initiatives that will allow us to better understand the new procedure proposed by Dr. Zamboni to treat MS and MS patients. Dr. Zamboni's procedure is well past the 'proposed' stage! It is estimated that more than 20,000 treatments have been performed. The world, Canada excluded, is eagerly pursuing the optimal methods of diagnosing and treating CCSVI. With regards to CCSVI, I regret to say that I'm embarrassed to be Canadian.
Speaking for myself, I hope that this procedure is a cure for MS. But we all have to understand that it is up to us as legislators to work with the research community, not put unreasonable constraints on the research community and try to force research by legislation. A government is only as good as the advice that it gets. When getting bad advice, a government ought to have mechanisms in place to detect insincere or corrupt advice. Your government has deliberately ignored advice from 'experts' such as Dr. David Hubbard, Dr. Sandy McDonald and Dr. Bill Code. You have given far too much control to the MS Society which is in turn controlled by a handful of biased neurologists who are little more than pharmaceutical shills.
I think I speak for everyone in the House when I say that we would all like to work together to see what we can do to end this devastating disease. I want to thank the member for bringing up this issue again. She has done a lot of work to bring this issue forward to Canadians and Canadian families. This government needs to stop talking at and start listening to Dr. Duncan! Vote yes to Bill C-280.
I look forward to your reply at your earliest convenience
Yours Sincerely,
Warren J. Stefanuk