MS Society Head in NL Resigns over Refusal to Back Clinical Trials

This post is a little off topic for Web Talk. Usually we deal with issues of political and social impact to Newfoundland and Labrador as it relates to the Canadian federation. Today however is a little different.

As someone who knows an MS patient very well, I believe its time the people of Newfoundland and Labrador, in fact right across Canada make it crystal clear to Health Canada and to provincial leaders that the time has come to distance itself from the recommendations of the MS-Society of Canada and move forward with clinical trials of the so called "Zamboni" technique for treatment of this dibilating disease.

While a ground swell of support for the trial has continued to mushroom across the Country and while NL as well as Saskatchewan have agreed to help fund those trials, the MS-Society itself has recommended that no trial should take place. Their reasoning is, if nothing else, self defeating.

According to the Society, while the anecdotal evidence is overwhelming, there is not enough clinical evidence to prove the treatment effective. If this is the case, then one has to ask why the Society does not want the trials to proceed. A process that would provide the evidence, one way or the other, on the treatment.

As a result of their stand the Chairman of the St. John's-Mt. Pearl chapter of the MS-Society of Canada, Ted Warren, has tendered his resignation. What follows are excerpts from his resignation letter. I believe his words speak far better on this topic than mine ever could and anyone reading cannot help but be touched by the case he presents.

“I am writing to express my profound sense of disappointment with the MS Society of Canada's decision to oppose clinical trials of the so-called CCSVI therapy for treatment of multiple sclerosis. I believe this attempt to undermine the growing national consensus supporting the need for such large-scale trials does a serious disservice to the very group the society professes to serve, namely those who live each day with this condition....”

“For those of us who have to live with the the harsh reality of MS ... the mornings when you awake to discover that one or more of your senses has been compromised by something that happened while you slept ... the days when you find you can no longer do the things that define you as a person ... the nights when you lie awake in terror, fearing how much more of yourself might be lost before the next dawn breaks ... for us, the personal accounts of recovery and return to the way things were before MS represent more than just compelling stories. They represent that all-too-rare opportunity for hope that we, too, can look to a better tomorrow. And that hope, in itself, is a powerful medicine...”

“I've watched the sheer delight in the faces of MS patients when they see a person who went from barely walking to building rock walls after receiving CCSVI treatment. I've shared their tears as we heard of a wife’s first dance with a formerly disabled husband who has now returned to all the precious joys of a ‘normal’ life. And finally, I’ve watched those same faces contorted in anger because the organization that is supposed to be devoted to helping them is refusing to acknowledge the sense of urgency that comes from the cruel reality of life with a degenerative condition.

“This is not a uniquely Newfoundland phenomenon. There are groups of MS patients in every part of this country who have been quietly lobbying for all 10 provinces to step up and fund a universal clinical trial for all Canadians living with MS. By stubbornly resisting this groundswell, the society has placed itself in the position of actively opposing an initiative that is supported by the vast majority of Canadians living with MS. Surely, an untenable position for this organization to take.

“What is perhaps most disturbing about the society’s stance in this matter is the lack of sensitivity it shows to the hopes and dreams of those who have the most to lose in this whole debate, namely individual MS patients. If there is any possibility that there might be an effective treatment out there, perhaps even one that can restore what has been lost, the MS Society should be doing everything in its power to make that treatment available to those who need it most at the earliest possible date. To do as the society has done this week and stand squarely in the way of this process is quite simply wrong.

“I urge you to reconsider this ill-advised, paternalistic policy before it is too late.”

There is no evidence, other than their position, to lead this writer to this conclusion but with so many stories of treatment success one can only assume the MS-Society of Canada is refusing to back this study because their own research has taken them in a completely different diretion. To switch gears now would force them to admit that they may have been wrong all these years and perhaps they fear such a situation would jeopardize their own research funding.

Thank-you Mr. Warren for looking into your heart and supporting the countless Canadians suffering from this terrible disease rather than backing the Society that is supposed to be looking out for the best interests of those same patients, not their own.