Health News: MS Grass-Roots Revolt Against MS Establishment
Helen Branswell, The Canadian Press
Date: Monday Jun. 7, 2010 8:26 AM ET
TORONTO — Impatient multiple sclerosis patients are attempting to mount a quasi-putsch, hoping to install two of their own on the MS Society of Canada's board.
The aim is to elect representatives to the national board who will agitate from inside for an unproven therapy MS patients cannot currently get in Canada.
The society, like its sister organization in the United States, insists that only through proper clinical trials can it advocate for universal access to the procedure for MS patients. But many patients aren't interested in waiting and are flying to clinics in Eastern Europe and India for something known as the "liberation" procedure.
Janet Heisey, 51, who has been battling the degenerative disease for 29 years, is collecting proxy votes from MS Society members in hopes of electing her husband, Brock Winterton and Linda Molyneux, whose son has MS, to the society's board at its annual meeting June 12.
"This may not work. We're giving it a shot. We're doing our best. Because there are an awful lot of people that want more representation," said Heisey, whose condition has progressed to what is known as secondary progressive MS.
She said the MS Society's unwillingness to push faster for universal access, in Canada, to the procedure is generating a lot of negative response on Facebook and other websites where MS patients share their views.
"There doesn't seem to be a presence (on the board) that is cheering for this, that is pushing it forward," Heisey said. "They have modestly stood behind CCSVI."
CCSVI stands for chronic cerebrospinal venous insufficiency, a term coined by Italian physician Paolo Zamboni for blockages in veins in the neck that he observed in a number of patients with MS.
His theory is that a build up of iron in the brain caused by the blockages either triggers MS or contributes to the damage caused by it, and that simply opening the veins restores at least some lost function to patients. The conventional belief is that MS is an autoimmune disease in which the body's immune system attacks the myelin sheath protecting the central nervous system.
Eager MS patients have flocked to foreign clinics that are willing to do the treatment, spurred on by anecdotal reports from others who have undergone it. But skeptical neurologists believe that may be a placebo effect at work and want to see well conducted clinical trials before they embrace the idea.
"Our point is we can't rely on anecdotes to advance it. It has to be in a controlled research setting," said Stewart Wong, national manager for media relations with the MS Society.
Patients appeared before a parliamentary hearing this week demanding the ability to get treatment in Canada. But Wong said provincial governments are unlikely to pay for the procedure here until there is proof it actually works.
Heisey and other activists believe they may be able to get more traction with people on the inside, which is why they have their sights set on the MS Society board.
It consists of 13 spots, seven of which reserved for provincial or regional representatives. The other six are open to anyone who pays the society's annual $10 membership fee.
Board terms are for three years, with terms starting at different points. Five board positions are up for grabs this year, Wong said.
But there are five incumbents who are seeking re-election. And they are on a slate of candidates that is being proposed by the society's governance committee. Normally the slate put forward by the governance committee is unchallenged, Wong said.
"They believe that this is a balanced slate that will serve the membership best," he added.
The society has roughly 31,000 members, but fewer than 1,000 generally participate in board elections.
As for Heisey, she'll leave for Sofia, Bulgaria's capital, hours after the board meeting concludes. She is scheduled to undergo treatment for CCSVI on June 14.
"I'm heading for a wheelchair.... That's why this procedure is important to me," she explained.
"Personally the best I hope for is that it will stop my progression. The evidence of other people's procedure is that more than that will happen. But I would be thrilled just to have it stop so I can walk and I don't end up in a wheelchair."
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