he following is a copy of a letter that I drafted to Ms. Francine Anne Roy, Director Health Spending and Strategic Initiatives, Canadian Institute for Health Information. It is my understanding that Ms. Roy will play in integral role in the management of the new Monitoring System for Multiple Sclerosis patients.

WireService.ca Press Release - March 16, 2012

OPEN LETTER

Honourable Leona Aglukkaq

Canadian Health Minister

RE: Canadian Multiple Sclerosis Monitoring System

Honorable Aglukkaq,

The following is a copy of a letter that I drafted to Ms. Francine Anne Roy, Director Health Spending and Strategic Initiatives, Canadian Institute for Health Information. It is my understanding that Ms. Roy will play in integral role in the management of the new Monitoring System for Multiple Sclerosis patients.

As an MS patient myself, I am greatly interested in the Monitoring System that has the potential to address many of the issues, needs and concerns of MS patients across our nation.

After having read the minutes from the meeting of the CCSVI Working Group (http://ccsvi.ca/en/pdf/wkgrp/SummaryOct11.pdf) from the MS Society of Canada’s website, this registry concerns me for several reasons.

As a former chapter president for the Multiple Sclerosis Society of Canada, Annapolis Valley, Nova Scotia Chapter, I have had contact with many people afflicted with Multiple Sclerosis not only in our region, but throughout Canada. As a CCSVI advocate, I also take issue with the organization of this registry.  I trust that you will be able to answer some of the concerns that I have about the organisation of this registry.

1.   I would strongly urge that the registry have a confidential online access code for patients with Multiple Sclerosis who no longer visit their MS clinics. For doctors or neurologists who object to patients giving information, may I remind you that this type of tracking system already exists through the Consortium of Multiple Sclerosis Clinics. This tracking system collects data on more than 35,000 MS patients across North America. http://www.narcoms.org/  I know many people, especially those who are in the more advanced, progressive stages of MS, who no longer frequent MS clinics for various reasons. In Nova Scotia, there are only two clinics in the entire province, and travelling hundreds of kilometers to access care and follow-up through an MS clinic can be a tremendous burden.

2.   Many people in the more advanced stages of MS require assisted living units, and therefore cannot travel to MS clinics. Missing out on this data would skew and invalidate the information being collected. In this case, it would be important that family physicians, and not just neurologists, submit data for collection.

3.   As for patients who have sought treatment for CCSVI outside of Canada, I think that there needs to be some serious discussion as to why these patients have chosen not to share this information with their neurologists. Many have left the MS clinics, and have not renewed their membership with the MS Society of Canada. Though a meeting has already taken place with the CCSVI working group of the MS Society of Canada, it must be known that this group does not voice the opinion of thousands across our nation.

4.   CCSVI patients have become leery of any involvement with the Canadian Network of Multiple Sclerosis Clinics, since their leadership has shown on several occasions overt disdain for the theory of CCSVI. This has created a breach of trust between certain MS patients and their neurologists. When Dr. Mark Freedman, the former president of the Canadian Network of Multiple Sclerosis Clinics was quoted as referring to CCSVI as a “hoax” and calling CCSVI advocates “cultists”, this created a larger gap in confidence between the CCSVI advocates, MS clinics and their neurologists. Therefore, any data collected through the MS clinics will, in my humble opinion, be incomplete.

I am providing you with my personal contact information, and would be honoured to share my concerns surrounding this registry, as I have only stated a few of the key points in this letter.

Warmest regards,

Christopher Alkenbrack
Wolfville, Nova Scotia

c.c.

-Honourable Stephen Harper, Prime Minister of Canada

-Mr. Scott Brison, MP for Kings-Hants, Nova Scotia

 -Dr. Alain Beaudet, President of the Canadian Institutes for Health Research

  - Mr. Yves Savoie, CEO and President of the MS Society of Canada

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