“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,” Warren wrote to Yves Savoie, president of the MS Society of Canada.
This province has said it will support national clinical trials of the treatment.
Top Canadian and American scientists now say there’s not enough evidence to back claims by Italian Dr. Paolo Zamboni that blocked neck veins are linked with MS.
The Canadian Institutes of Health Research held a news conference Tuesday to make recommendations on MS research priorities. The head of the federal agency which funds health research said the experts weren’t convinced Zamboni’s procedure works and is safe, and so they say it’s too early to back clinical trials.
“There was a unanimous recommendation by the members of the working group not to support such a trial at this stage,” Alain Beaudet said.
“Quite simply, the experts agreed that there is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure.
“Nor is there any evidence at this time that there is a link between venous malformations and/or impaired brain venous drainage and multiple sclerosis.”
MS has long been thought to be an autoimmune disease. But Zamboni contends that iron builds up in the brain because blood isn’t draining properly.
Warren said he’s spent the last few months defending the society’s “nuanced approach, first conducting basic research on the theory to gauge its validity, but the growing tide of anecdotal evidence from patients who have experienced dramatic improvements in their condition cannot be denied.”
“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,” Warren said in his resignation letter.
“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.”
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Thank you Mr. Warren for standing up for those of us suffering with MS. It's so sad to learn that the MS Society looks the other way and lacks the integrity to do the right thing. If these "people" that refuse to support CCSVI had to spend one day in our shoes or had a loved one with this cruel disease, I'm sure that they would do whatever it took to get this treatment. I have been diagnosed with MS for over 10 years and had the Liberation procedure. Ten years of feeling no hope for the future and now I'm getting my life back. As angry as I am with the MS Society, I could never wish MS on them, but I truly hope that they stop letting greed dictate their decisions.