TORONTO — Multiple sclerosis patients and advocates were thwarted in a bid to win two seats on the MS Society of Canada’s board on Saturday, positions they sought in order to push for immediate access to an unproven treatment not available in Canada.
Linda Molyneux, whose 22-year-old son has MS, and Brock Winterton, whose wife has the disease, failed to secure enough votes to unseat two of the five board nominees on a slate proposed by the society’s governance committee.
Though their nominees prevailed in the election, the society’s executive and professional staff took a verbal pounding. Member after member denounced them for failing to use the society’s clout to demand immediate access to treatment in Canada for a condition called CCSVI —— short for chronic celebrospinal venous insufficiency.
“You’re not meeting the Number 1 need of your constituents,” one angry society member said in a heated discussion that stretched what is normally a 30-minute meeting to nearly five times that.
“It has become quite clear to me the MS societies have lost touch with their membership,” Molyneux said when she appealed for votes.
Patients feel the single greatest impediment that stands between them and this treatment is the MS Society, she said.
At issue is the unhappy confluence of a new theory about what causes MS, an untested therapy, a disease advocacy group that feels it must be guided by scientific evidence and a sizable membership that is unwilling to wait for science to prove something they already believe to be true.
“This house is probably divided and we may not reconcile it today,” Yves Savoie, president and CEO of the MS Society of Canada, acknowledged.
The society gently reiterated that it cannot advocate for treatment for a condition — CCSVI — that hasn’t yet been proven to be involved with MS, let alone shown to be the cause of, not a side-effect of the condition.
The theory is the brain child of Italian physician Dr. Paulo Zamboni, who has linked blocked neck veins with MS. He contends a build up of iron in the brain due to insufficient blood drainage triggers the disease. The longstanding belief is that MS is an autoimmune disease.
Since word of Zamboni’s research was publicly aired last November, patients have been demanding access to treatment for the blockages and MS society officials have been struggling to figure out how to cope with the increasingly frustrated demands.
At Saturday’s meeting, society officials noted that the Canadian and U.S. societies had granted $2.4 million in research funds Friday, and that the Canadian group had asked the federal government for $10 million to devote to CCSVI research.
But the patients weren’t in the mood to be told to wait several years for research studies to answer those questions, and dismissed the Canadian portion of that funding package — $700,000 over two years — as “inappropriate.”
“People with MS don’t have the luxury of time,” Winterton said.
“I want my veins opened. Why can’t I have my veins opened?” asked MS patient Michele Deverill, 51, of Toronto.
Deverill said she is outraged that people with other conditions can have the vein-opening procedure — which involves snaking a balloon into the vein and inflating it — but because she has MS she cannot have it done in Canada.
Many patients aren’t waiting. Instead they are flocking to clinics in Poland, Bulgaria and India to undergo the procedure.
In fact, Molyneux just arrived back late this week from Bulgaria, where her son had angioplasty for blocked veins. Winterton and his wife left the meeting early to catch a flight to the same Eastern European country, where she will have the procedure next week.
While most people attending the meeting demanded the MS Society make CCSVI research and treatment its top priority, a few raised cautionary voices.
One woman said she was unwilling to be a guinea pig. And a man whose wife suffers from MS worried that too much focus on one theory could prove to be a mistake down the road.
“If we’ve put all our eggs in the one basket, we could be years behind on the research to find the cure,” said the man, who asked not to be identified because his wife keeps her MS under wraps.
“I mean, I’m hopeful that this is it. That would be fantastic. But you’ve got to diversify your portfolio and make sure that you’ve got all avenues covered so that if this doesn’t work, well maybe this does, or this does.”