TO: The Honourable Leona Aglukkaq, Minister of Health

FROM: Christopher Alkenbrack (Nova Scotia), Yvonne Anderson (Nova Scotia), Jeff Baker (Ontario), Janine Caudle (British Columbia) Karen Copeland (Ontario), Jennifer Crossfield (British Columbia) Maria Dekleer (Ontario), Francine Deshaies (Quebec), Antonio Di lorio (Quebec), Judy Filipkowski (Ontario), Robert Fraser (British Columbia), Steve Garvie (Ontario), Chrystal Gomes (Ontario), Douglas G. Hare (Ontario), Myles Higgins (Newfoundland and Labrador), Val Hoenecke (Saskatchewan), Linda Hume-Sastre (Ontario), Wendy Ireland (Ontario), Watson McGregor (Saskatchewan), Amy Preston (Ontario), Brenda Requier (Alberta), Tessa Rushton (Alberta), Duncan Thornton (Manitoba), Michelle Walsh (Saskatchewan), Sandra Young Robinson (Ontario) 

SUBJECT: Multiple Sclerosis and Chronic Cerebrospinal Venous Insufficiency

The issues surrounding multiple sclerosis and chronic cerebrospinal venous insufficiency are a subject that has been raised in the House of Commons in the last 18 months.  Your stock answer to any question about CCSVI is that you sympathize greatly with MS sufferers, that you are working with the MS Society, MS clinics, the provinces and territories and “experts” to ensure that MS sufferers receive the best information possible about CCSVI and its potential benefit for MS sufferers.  You assure us that if your “experts” recommend it, the government will take action to fund, or partially fund, clinical trials.  Minister, your stock answer is not acceptable.  

First, the MS Society does not speak for us and does not speak for many other MS sufferers we know.  In our view, the MS Society has actively worked against MS sufferers by joining with a small group of angry neurologists to stop or at least to delay any meaningful investigation into CCSVI.  The Society joined forces with the Canadian Institutes of Health Research to bring together in August 2010 a group of so-called “experts” to consider CCSVI and to make recommendations.  This group included many “experts” who have clear conflicts of interest and many “experts” who have been vitriolic in their opposition to CCSVI.  The panel did not include experts in CCSVI who, according to Dr. Alain Beaudet, were deliberately excluded.  You eagerly embraced the biased and unscientific recommendation of this group and still claim to count on their “expert” advice to determine the fate of up to 75,000 Canadians and their families.  Minister, your actions are not acceptable.

Second, CCSVI is a vascular issue that requires vascular expertise.  To our knowledge you have not sought the opinion of vascular experts.  Have you discussed CCSVI with Dr. 

Sandy McDonald, Dr. Mark Haacke, Dr. David Hubbard, Dr. Gary Siskin, Dr. Salvatore Sclafani, 

Dr. Marian Simka, Dr. Paolo Zamboni or any other highly regarded vascular specialist who has true knowledge of and experience with CCSVI?  You were invited to a breakfast on 8 February to meet Dr. McDonald, Dr. Haacke and Dr. Hubbard but you chose to send one of your officials rather than gather information first hand.  Minister, your actions are not acceptable.

Third, the studies funded by the MS Society, the results of which you say you are eagerly awaiting, are simply re-inventing the wheel.  The studies are supposedly geared to investigate any association of CCSVI with MS.  That information is already available and has been available for some time including from vascular specialists in Canada.  Indeed, the Government of Ontario, in responding to a query from the Ontario Ombudsman, stated that the Ministry of Health and Long-term Care is “unaware of any diagnosis of CCSVI separate from MS.”  The MS Society studies are being conducted in some cases by “experts” from the MS Society/CIHR “expert” panel who, we have already pointed out, have conflicts of interest and who have publicly, and with great vehemence, denounced CCSVI and have personally attacked Dr. Zamboni.  Unfortunately, you refuse to investigate for yourself whether or not the MS Society studies will be of value.  Minister, your actions are not acceptable.

Fourth, we would suggest, Minister, that you ask your staff to investigate Canadian jurisprudence regarding a patient’s right to have or not to have a medical treatment.  A decision by Justice Sydney Robins in the Ontario Court of Appeal, Fleming v Reid clearly states the case that the patient, not the physician, must decide if treatment is to be administered (Open Medicine, Vol. 5, No. 1 (2011) letter from Kenneth Arenson).  MS sufferers who want to be tested for CCSVI and treated for this vascular condition, if testing indicates that it is there, have the right to ask for and receive the test and the treatment.  We, and many MS sufferers we know, would be willing to pay for the testing and treatment in Canada.  Minister, the current situation in Canada for MS sufferers and your refusal to consider improving it is not acceptable.

Finally, election talk is in the air.  We are sending this letter to you and to your Conservative colleagues in the House because we want to know what a Conservative government, if returned to power, will do about this issue.  Dr. Ignatieff stated on 17 December 2010 in an interview with the Globe and Mail that a Liberal government would launch federally funded clinical trials that include testing and treatment.  Will a Conservative government make the same commitment and honour it?

This letter will be made public.  Consequently, we request that your response be given in the House of Commons, a public forum comprised of representatives elected by the people of Canada, at an appropriate time in the very near future, bearing in mind that your stock answer is not acceptable.

Cc: The Honourable Members of Parliament of the Conservative Party of Canada

The Honourable Dr. Michael Ignatieff, Leader of the Liberal Party of Canada

The Honourable Mr. Jack Layton, Leader of the New Democratic Party of Canada

The Honourable Mr. Gilles Duceppe, Leader of the Bloc Quebecois

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