Members repeatedly expressed disillusionment with a society they’d supported for decades. Some questioned the make-up of the medical panel who approved the CCSVI research grants, noting it was filed with neurologists and lacking vascular specialists familiar with Zamboni’s protocols.
Some MS patients took to the floor to express fury that they were being discriminated against. “I want my veins opened. Why can’t I have my veins opened?” asked 51-year-old Michele Deverill of Toronto. “Why won’t MS Society agitate in Ottawa on our behalf?” Someone else made the analogy with the Heart and Stroke Society’s advocacy for the new blood-clot vacuum used on stroke victims. It was tested on 27 people before going into widespread use and subjected to no clinical trails.
Yves Savoie, the society’s president and CEO, was calm and measured in his responses: “I understand the sense of urgency,” he said. “Yet the evidence base needs to be robust.” Factions exist, he admitted. “This house is probably divided and we may not reconcile it today.”
By meeting’s end, however, it was clear “this house” has been duplexed. Eleanor Barker was among the most outspoken. Her 51-year-old brother Grant who has had MS for decades is now a quadriplegic, she told the room; over the past six months, MS-related dementia has set in, stealing his once-vibrant intellect. Scans reveal no blood flow in one vein. Her family is so desperate they’ve researched the cost of air ambulances to transport him to Bulgaria: $125,000 each way.
The MS Society’s number one advocacy goal should be for every MS patient in the country to have CCSVI testing, Barker said. “People have a right to have blood flowing through their bodies, even if they have MS.” She challenged the room: “Is there anybody who doesn’t believe that people shouldn’t have access [to CCSVI]?”
Not all members did. One man whose wife has MS which has been progressing slowly expressed concern that the focus on CCSVI could leave MS patients further from a cure. One woman said she was unwilling to be “a guinea pig” and had “faith in the system.”
They were in the minority. Brian Light, a Toronto publisher who addressed the room from his wheelchair, spoke of traveling offshore for CCSVI treatment in January. Since then, the disease has not shown any signs of progression, he said. He questioned why the society has shown no interest in tracking Canadian MS patients among the more than 1,000 who have received CCSVI treatment elsewhere in the world.
“MS is a disease of testimony,” Light said. “Everyone has a completely different story.” He too begged for the society’s support on behalf of fellow MS patients: “We’re getting worse. We’re going down and we’re going down bad,” he said. “Give them this chance.”
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