An Etobicoke MP continues to push for clinical trials for a controversial multiple sclerosis (MS) procedure despite a recent decision by the federal health minister to hold off on funding.
Leona Aglukkaq, Canada's top health figure, accepted recommendations based on a "thorough review of the current state of science" by experts during an Aug. 26 meeting organized by the Canadian Institutes of Health Research (CIHR) and MS Society of Canada.The controversial treatment in question has been dubbed the "Liberation Procedure", which Etobicoke North MP Dr. Kirsty Duncan said has been performed in several countries, adding a physician in Barrie - Dr. Sandy Mcdonald - has also treated a Canadian patient using the technique. That patient, Steven Garvie, who Duncan said hails from Barrie, shared his experience to a House of Commons subcommittee on neurological disease. In the minutes of that meeting, dated June 1, Garvie explained he is a 53-year-old who was diagnosed with secondary progressive MS about 10 years ago. "Before the procedure on Jan. 29, 2010, I was in (government-funded) housing," noted Garvie, adding he was visited by caregivers three times a day. "People have pride. I had none. My life was taken away from me."He said a television program on the procedure prompted him to talk to his doctor, who referred him to Mcdonald's clinic. "It's a 45-minute procedure. Painless. Life-giving. It gave me back what I lost, and I can't thank them enough for that."The procedure, said Duncan, involves "standard balloon angioplasty" and was pioneered by an Italian doctor to treat chronic cerebrospinal venous insufficiency (CCSVI). But at the Aug. 26 meeting, "the scientific experts agreed that there is an overwhelming lack of scientific evidence that there is any link between abnormal venous drainage and MS," according to the government statement. "The scientific experts unanimously agreed that it was premature to support a pan-Canadian trial on the treatment of abnormal venous drainage, also known as the Liberation Procedure."Duncan explained the procedure is being performed "at a cost" in Bulgaria, Germany, Poland, India, Mexico, Costa Rica, India, "and the list goes on". She said the government's decision to not move forward now is "going to force more patients overseas" to be treated. She is also pushing for Canada to collect data from the "hundreds of Canadians" who have left home soil for the procedure.Duncan wrote a letter to the health minister dated Aug. 20, also posted on her website, asking for CCSVI to be on the agenda for a health ministers' meeting in St. John's, Newfoundland, on Sept. 13 and 14 and that Mcdonald and Dr. Mark Haccke - "a world leader in diagnostic imaging" - be invited to present their scientific evidence. The MP said there are injections available for MS patients to reduce the frequency and severity of "attacks" but they cost $20,000 to $40,000 a year. But, "If you have a very severe form (of MS) ... there's no help," she said. To give those patients "a glimmer of hope" clinical trials are needed, she added. However, Health Canada did say the government will establish a scientific working group, and based on the outcomes of studies currently underway, reach conclusions about "the association or lack thereof" between impaired venous drainage and MS. Based on the conclusions, the scientific expert working group will "make recommendations on further studies including, if appropriate, a pan-Canadian interventional clinical trial." The first meeting of the working group could happen this year based on the recommendations.Aglukkaq said through the statement, "This government recognizes the difficulties faced by the thousands of MS patients across Canada and their families. We'll continue to work hard in the fight against MS."