MS Awareness Month

The Multiple Sclerosis Society of Canada has set aside May as a month to bring awareness to multiple sclerosis (MS). While the exact cause remains unknown, the disease “attacks the myelin which is a protective covering wrapped around the nerves of the central nervous system” (for more information, and the source of my own information see here). Physical effects of this include fatigue, loss of balance, loss of vision, and paralysis. The emotional, social, and financial toll is also heavy. According to MSSC statistics, Canadians have the highest rates of MS in the world, every day three more Canadians are diagnosed with it. Women are three times more likely to develop MS, and while it is usually diagnosed in ages from 15-40, children as young as 2 years old can have it. Today I learned that the Province of Manitoba has the highest count of people with MS.
Today all around Canada protesters rallied their government to bring a revolutionary treatment into the health care system. I attended the rally at the Manitoba legislature in Winnipeg with my friend and professor, Val, who was diagnosed with MS last summer. A handout we were given nicely summarizes the reasons for the rally:

CCSVI (Chronic cerebro-spinal venous insufficiency) is a recognized vascular disorder where narrowed veins in the neck cause deoxygenated blood to flow back (reflux) into the brain. People with MS, a debilitating neurological condition are more than twice as likely to have CCSVI.
The Research
Dr. Paulo Zamboni, a vascular specialist from Italy, published his clinical trial results on CCSVI and MS in November, 2009. Results demonstrated that retreating CCSVI stopped the progressing of MS in 76% of patients and reversed symptoms for some.
Researchers around the world are currently replicating his work.
Screening and Treatment
CCSVI is diagnosed by Doppler Ultrasound, MRV and Venogram—all safe, standard tests in Canada.
Angioplasty, the recommended treatment for CCSVI, is a simple outpatient procedure with minimal risk.
The Reality
MS costs Cnada $1.1 billion each year. For a one-time cost of less than 1% of that, all Canadians with MS/CCSVI could be tested and treated.
Kuwait, for example, has undertaken to screen and test all its citizens living with MS/CCSVI.
Join us in making the MS society and Government to make the right and economic and moral choice—Allow Manitobans with MS to be screened and treated for CCVSI here in Manitoba and Canada.

We heard from two patients, Duncan Thronton and Alison Dallas, who went to Poland to receive the treatment and whose lives have been positively affected due to the treatment. The minister of health then got up and gave a little speech. We last heard from a family, seen in the top of the picture, who shared their struggle as they watch the rapid deterioration of the a loved one, father and husband, unable to access this treatment. The event was well put together, the speakers informative, personal and respectful, and the topic certainly hit a nerve here. The day was not a good day for an outdoor rally, especially considering that symptoms of MS are aggravated by cold weather. Nevertheless, a crowd numbering in the hundreds gathered to put pressure on the government.

Oh, politics! Given that most Canadian hospitals not only have the ability to test for CCSVI in MS patients, but also have the ability to do the outpatient surgery, coupled with the research saying 76% of patients have reversed symptoms after the treatment, one would think that it would be a no-brainer for the government to provided its citizens with this care. Apparently this is not so obvious to the government. It apparently seems to be a matter of certainty or proof of the effectiveness of the treatment. (Of course, I suspect it has more to do with the lucrative pharmaceutical companies which would not profit off people no longer needing medication...) Oswald, the MB health minister who gave a little speech, mumbled something up there about making sure everything was coordinated and all the risks were known. I suppose that when it is not one’s own body which is deteriorated at a rapid pace one can afford to question the scientific proof of the 76% of people who have reversed symptoms… At the end of the rally Val and I were discussing whether in her speech the health minister actually said anything. She did say she liked the ideas which were presented… Well, Oswald, something would be wrong if you didn’t like the ideas—after all, you are the health minister—but what are you going to do about the ideas?

It is always humbling how much you change once you are personally involved in an issue. While I do not have MS I have watched a close friend and mentor wrestle through two semesters of teaching, battling fatigue, pain, and numbness along with all the emotional and social effects of the condition. Not to mention all the medical procedures, drugs and doctors your body and mind must endure along the way. Walking with another person through this has a way of putting events like today in context. It is obvious to me that if she can afford it, she should be tested for CCSVI and, if positive, fly to Poland to receive the treatment. Of course every other person I know would also agree with this—but Val would not be herself if she did not protest, asking why she, due to her socio-economic privilege, should receive this treatment and others have to suffer. I can think of a few arguments for reasons why, but for a moment, I think it is good to let this tension live a little. Were it not for people like Val these rallies would not happen. It is Val’s stubborn insistence on justice and equity which has liberated my own mind, and many others I know. It is in fact the reason that I was there today, why I have attended other protests in the past and why I will continue to protest injustice. Val's stubborn insistence for social equity was the ignition to my own sense of justice which fueled my thesis and will drive me to pursue further studies. Val has taught me not only to value equality, but to live it by both instructing me in sociology and theatre, exploring justice in all its complexity, but more profoundly by living within the tensions of justice herself. I hope she does receive treatment even if it is an exercise of privilege—I am aware and grateful for the way she holds this privilege, acknowledge it as such, and demanding equal access to all.