MS patients rally to demand CCSVI treatment
Published Wednesday, May 5, 2010 9:51PM EDT
Hundreds of multiple sclerosis patients rallied at demonstrations across the country Wednesday, demanding treatment for a controversial, newly identified condition that many believe is the root cause of MS.
The patients say that governments should open up funding immediately so that patients can be tested for CCSVI, or chronic cerebrospinal venous insufficiency. It's a condition named by Italian vascular surgeon Dr. Paolo Zamboni in which veins in the neck and chest become blocked and fail to allow blood to drain properly from the brain.
With some studies suggesting that MS patients have up to twice the likelihood of having CCSVI, and with many patients describing relief from some of their MS symptoms after having their veins opened, MS patients say they want governments in Canada to begin offer testing and treatment right now.
"In the meantime, we're deprived of everything knowing that outside this country, outside the border, there are some people allowed to get the diagnosis and the treatment," MS patient Charles Laferriere told CTV Montreal during a rally at Trudeau Park in Cote Saint-Luc.
To make their demands, patients marched at provincial legislatures and city centres across the country, from Vancouver to Ottawa and Halifax, and cities in between. The rallies were co-ordinated by patient groups over the Internet, who decided to designate May 5 "World CCSVI Liberation Day."
About 50 people attended a rally outside the Ontario Legislature in Toronto, including Daphne Mansfiend, whose husband is an MS patient.
"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."
Hundreds of people attended a rally in Winnipeg, while 30 people attended a rally in Halifax, and another 50 people rallied in Edmonton.
The patients say that while they want more studies into the CCSVI theory, they can't afford to wait for the results of those studies, which will likely take years to complete.
They say that not only do they want testing for CCSVI, they want to be given access to the "Liberation treatment," a venoplasty procedure in which the veins are opened using a tiny catheter-guided balloon.
The MS Societies in both Canada and the U.S. have called the early findings surrounding CCSVI "exciting and intriguing," but have said more research is needed to firmly establish the link between blocked neck veins and MS symptoms.
They have also cautioned patients against seeking untested treatments, urging them to not discontinue conventional treatments for their disease.
But Canadian MS patients are travelling outside the country to get the liberation procedure, spending sometimes tens of thousands of dollars to do so.
Montreal patient Francine Deshaies said she is travelling to Poland next week for the procedure.
"I'm not expecting a miracle," Deshaies said. "I just want to stop the progression."
While one clinic in Quebec was performing scans to diagnose CCSVI, the Quebec College of Physicians has asked it to stop because the theory is not yet proven in widespread studies.
"If it's not scientifically proven, why should you lose your money?" Dr. Yves Lamontagne of the College of Physicians told CTV Montreal. "Wait a bit, try some conventional treatment, and if in a year or two or six months we have full proof that this is miraculous, of course we would do it."
MS patient advocate Diana Price says it's not right that patients feel forced to leave Canada for the health care they should receive here.
"We shouldn't have to leave our country in order to have this procedure done. The government should step up and do the right thing and serve its people," Price told CTV's Canada AM Wednesday, ahead of the rallies.
Price was diagnosed with MS 24 years ago. Her health has declined in the last seven years, marked by problems with her vision and balance and with what she describes as "incredible fatigue."
She said she underwent ultrasound testing and found that both of her jugular veins were blocked. But she says she can't access the "liberation treatment," because of the controversy over CCSVI.
Venoplasties are considered relatively safe and are performed routinely for such conditions as peripheral artery disease, so Price wonders why she can't have the procedure done too.
"This procedure is performed every day in our country. But because we have MS, it's being withheld. And that is wrong. Testing and treatment should be made available immediately because it's just the right thing to do," she said.
She said blocked neck veins should be looked at as a vascular problem, separate from MS.
"The issue of blocked neck veins should be looked at separate situation. I want the blood that is flowing in my veins to be flowing freely," she said.
Later this week, representatives of the MS Society of Canada, including its president, Yves Savoie, will be on Parliament Hill, speaking before the Commons Subcommittee on Neurological Disease, part of the Standing Committee on Health, to request more money from the federal government for further studies on CCSVI.
As well, an MS patient will be speaking about the need for all Canadians at risk for CCSVI to have access to screening and the services of vascular specialists to advise on any necessary treatment.
With a report from CTV Montreal's Annie DeMelt