An unproven theory that the cause of multiple sclerosis is due to constriction of bloodflow in major neck and chest veins has been deemed “promising” by the MS Society of Canada, and has gained support from the Alberta Division and the president of Drumheller’s Chapter.
CCSVI is said to be treated by a balloon angioplasty, routine in operations of the heart, which opens up veins in the neck and chest to increase blood flow. It is also referred to as the “Liberation Treatment”.
Although yet unproven, there are reports of MS patients seeing remarkably positive changes after the operation, and some patients experiencing no change at all.
Health Canada has said there is not enough evidence to proceed with Canadian clinical trials to investigate the Liberation Treatment, causing some Canadians, including local MS patients, to seek the operation elsewhere.
Canadians have been travelling to private clinics in Mexico, Kuwait, India, Poland, and Costa Rica, among others.
The operation can cost upward as $20,000.
“At some point, you're desperate. Out of desperation, you hear that it's helped someone and you’d spend your life savings to go over and get it done,” said Drumheller MS Society chapter President Deb Wynia, who also suffers from MS herself.
“I’m very much in support of testing and studying it quickly here in Canada,” said Wynia.
“I don’t want people running to other countries to get it done without knowing the risks, but I wouldn’t blame them because of the nature of this disease. MS is so unpredictable, you can be walking today and in a wheelchair tomorrow.”
Wynia has said a few local MS sufferers will be travelling elsewhere to receive the CCVSI procedure, going to Mexico, Costa Rica and India.
They were not prepared to comment to The Mail before the operation, but have shown interest in meeting with press upon their return in late October, Wynia said.
“As someone standing back and watching people spend money to have the operation out of country, which still may not work, it’s crazy,” said Shawna Johnston, an MS patient living in Hanna. “For me, if they did studies here in Canada, I would definitely want to be a part of the studies.”
Johnston had written a letter to Member of Parliament Kevin Sorenson, gaining a response.
Sorenson’s office said, “the clinical diagnostic trials currently underway will help us determine how to proceed in a safe and ethical manner.
“The MS Society of Canada is in support of this, but we can’t do the testing. It’s up to the medical community, and they need funding from the government to do the study,” Wynia said. “I’d like to see more pressure on the government for funding and consideration of this procedure, which doesn’t appear to be happening.”
“We don’t know whether MS causes the narrowing of these veins, or if the narrow veins cause MS. Even Dr. Zamboni says more study is needed.”
On September 16, the MS Society of Canada's Board of Directors unanimously approved a motion to reserve $1 million for CCSVI and MS pan-Canadian therapeutic clinical trials. The funding will be set aside so that an immediate infusion of funding will be available when such a trial is developed and approved.
Already, $2.4 million has been committed by the society and National MS Society (USA) to support seven research projects, including one project in Calgary.
Health Canada has said scientific evidence thus far has not proven the need for clinical trials, and they have these seven two-year studies to monitor the situation.
Sorenson’s response to Johnston had mentioned the clinical studies approved by Health Canada.
“Diagnostic trials, which usually include individuals who have signs or symptoms of a particular disease or condition, are conducted with the goal of finding better tests or procedures for diagnosing that disease or condition. In this case, the seven diagnostic trials of CCSVI currently underway are focused on the nature of venous blockage and on establishing whether or not there is a connection between MS and CCSVI.”
Late this summer, the Federal Minister of Health accepted the Canadian Institutes of Health Research’s recommendation to create an expert scientific working group to monitor the results of the studies already underway. The experts will analyze the evidence about the definition and nature of venous blockages and their relationship with MS, since this information will be central to obtaining ethical approval to enrol participants in a trial.
“The MS Society is committed to doing all that it can to ensure that an eventual trial will be rigorously designed and successfully implemented,” said Neil Pierce, President of the MS Alberta and NWT Divisions.
“We will continue to expedite the research process so that the treatment potential of CCSVI as it relates to MS can be understood as quickly as possible.”