People battling multiple sclerosis, their families and other supporters of the ‘liberation treatment' rallied on Parliament Hill Monday for a better future, pushing politicians to fast-track clinical trials that would use angioplasty to open up narrow veins in their necks.
Right now, patients who want the surgery have to go to the United States or abroad to have it done.
"My quality of life has gone through the roof just because of this procedure and I think that other people should have access to this procedure as well," said Wendy Ireland, one of many MS patients to get the treatment outside Canada.
"It's frustrating. I feel really frustrated about it," added MS patient Erika Pasanko, who is waiting to get the treatment done in the United States.
She said she feels discriminated against, and it's time for the government to take action.
"Anybody else that would have blocked veins would get this treatment, they would get it fixed right away, but because we have a prior diagnosis of MS, they're not treating us and they're holding us back from something. It's about a quality of life, a standard of living."
Federal gov't responds
However, federal Health Minister Leona Aglukkaq maintains the government will wait for more research before going ahead with nation-wide clinical trials.
"At last week's health ministers meeting, my colleagues and I agreed on the importance of accelerating research, so that families can make informed decisions about the MS treatment options," she said on Monday.
Aglukkaq said last week the government "has never said no" to funding clinical trials that would open narrowed veins in MS patients to accelerate blood flow from the brain.
"What we've said all along is that there are studies underway -- seven research projects that we announced. We hope to . . . accelerate the development of a pan-Canadian clinical trial," Aglukkaq told reporters in St. John's, N.L. last week.
Research projects
The theory, put forward by Italian doctor Paolo Zamboni, links blocked veins to multiple sclerosis, a chronic and often disabling disease targeting the brain and spinal cord.
However, MS experts have been critical of the theory, dubbed Chronic Cerebrospinal Venous Insufficiency (CCSVI), insisting more research needs to be done.
An Ottawa doctor is one of seven in North America to receive a grant to study Zamboni's CCSVI theory. His team will use MRI technology to explore whether vein structure and iron deposits on the brain are unique to people who have MS.
Canada has one of the highest rates of MS in the world. The Saskatchewan and Newfoundland and Labrador governments have both committed to funding clinical trials of CCSVI.
With files from CTV Ottawa's Norman Fetterley
