People with multiple sclerosis and their supporters rallied in cities across Canada on Wednesday, pressing for more funding and research for an unproven treatment for the disease.
The activists, many of whom were in wheelchairs, want researchers to speed up work on the theory that narrowed neck veins cause blood-borne iron deposits to build up and damage brain cells, and that unblocking the veins will help people with MS.
The notion that chronic cerebrospinal venous insufficiency — or CCSVI, as it's called — causes or contributes to MS has been put forward by an Italian doctor, Paolo Zamboni. But many neurologists and others in the medical community are cautious and say that much more study is needed to see if it even plays a role in the disease.
The Multiple Sclerosis Society of Canada has called on the federal government to provide $10 million that would be earmarked for CCSVI research.
About 50 people attended a rally in Toronto outside the Ontario legislature. Among them was Daphne Mansfield, of Brampton, whose husband suffers from MS.
“What brings me here today is my husband, Luciano Vascotto. He’s had MS for 20 years and we have been trying all different things to see if we can get him walking again," she said.
"His left side is gone completely, so we’re hoping one day he’ll be able to have this surgery they are saying could help to unclog the veins, and hopefully he’ll be able to have some use of his left side again.”
In Halifax, about 30 people gathered at the legislature to call on the Nova Scotia government to approve the procedure and provide funding for those seeking testing and treatment.
Christopher Alkenbrack, a 42-year-old former teacher from Wolfville, N.S., said governments should start offering help now, even though the treatment is still in the experimental stage.
"I'm not in a wheelchair yet, but I could be soon if I don't get this procedure done," he said, leaning heavily on a pair of crutches. "They need to act immediately."
Alkenbrack, who was diagnosed when he was 24, said he was forced to quit his job as a principal in Quebec six years ago and his health is in decline.
He recently cashed in his RRSPs and is planning to travel to Poland on May 15, where he will receive the treatment. He expects the trip will cost him $15,000.
Nova Scotia Health Minister Maureen MacDonald said the province needs to be sure the risks and the benefits of the treatment are clearly established.
"It's still a very experimental therapy that requires more research," she told the legislature. "We need further research to determine what the impact of this treatment will be."
In Edmonton, Mike Phillips was among roughly 50 people — some carrying placards and banners — who gathered in front of the Alberta legislature.
His 23-year-old daughter Crystal recently lost the sight in her left eye because of a major MS relapse and she has started an awareness campaign of her own. Crystal, her family and friends have been wearing a decorated eye patch over their left eye.
"She came up with this idea with a group of her friends that are supporting her so that we can help raise funds to help those people who can't help themselves and aren't able to go outside the country to get this type of help," Phillips explained.
"I think it's really important that Canada takes an immediate approach to allowing people with MS to at least be tested and then to get the medical people up to speed with these other countries so they can do this procedure."
His family plans to go to India with Crystal and "it's going to cost anywhere from $20,000 to $25,000."
An estimated 55,000 to 75,000 Canadians have MS, which causes symptoms that can include trouble with balance and walking, partial blindness and extreme fatigue.
Zamboni's theory counters the long-held belief that multiple sclerosis is an autoimmune disease, caused by the immune system attacking the myelin sheath that covers nerve tissue. It's not known what triggers that process.
Mansfield said those living with a person who has MS see "the little bits that are taken from them day by day."