MS Society members 'break ranks' and try treatment
Published Tuesday, October 12, 2010 10:00PM EDT
With a number of multiple sclerosis patients heading to clinics overseas for the "liberation treatment," some members of the MS Society of Canada have found themselves in a quandary: follow the Society's advice and wait for more evidence about the treatment, or break ranks and try it anyway.
Julie Goodwin is one of those who have been forced to make the choice. She has a progressive form of MS and recently moved to an electric wheelchair.
Goodwin is a mother of two, living in Guelph, Ont. She's also the chair the MS Society chapter in Wellington County.
Goodwin heard months ago about the liberation treatment, developed by Italian surgeon Dr. Paolo Zamboni. Zamboni theorizes that blocked neck and chest veins -- a condition he calls CCSVI (chronic cerebrospinal venous insufficiency) -- contributes to MS. He believes that opening the veins with angioplasty can provide some relief of symptoms.
The MS Society of Canada's position is that while Zamboni's theories are of great interest, they want to see more evidence that CCSVI is real and connected to MS. They also want to be assured that the liberation treatment is safe and effective before recommending it to patients. They're advising patients to await the results of trials already underway, results that should be available in about two years.
Despite the MS Society's stance, Goodwin has decided to try the hotly debated treatment.
"I just really feel I can't wait indefinitely," she tells CTV News. "My symptoms are getting more severe. I have been spending more and more time needing the assistance of this wheelchair."
"If it happens in Canada, when it happens in Canada, fantastic. But how long do I have to wait for that?" she adds. "I can't afford to wait. My family can't afford to wait."
So Goodwin has booked a treatment at a clinic in Poland for early December.
Until a few days ago, she wasn't going to tell her national leadership about her plans. But when she mentioned it to fellow patients at a local MS meeting, word spread. And when CTV News called, Goodwin decided to speak out.
"They are still really being cautious to the point of utter frustration," Goodwin says of the Society.
She says the Society's position is not in touch with a membership that wants active treatment studies as soon as possible.
"I think that their position should be revisited. I think they should move forward, and really, encourage a valid study being done within Canada," she says.
Goodwin says she hopes her speaking out will grab attention.
"I think I have more influence, and more impact in my position. I like that I am helping people and helping myself," she says.
Goodwin is not alone. There are now several MS Society chapter leaders across Canada defying the national position, often after seeing other patients returning from foreign clinics -- some reporting improvements in balance, energy and vision.
Frank Van Oirschot, vice-chair of the Chatham-Kent MS Society chapter for eight years, is determined to send his daughter Pam for treatment at a U.S. clinic. Pam has progressed to a point where she now lives in a long-term-care facility that helps her with feeding and bathing. There are no treatments for her progressive form of MS.
"We have between 20 and 17 people who are going, or who have had it done, and every one of them has shown a marked improvement in their life and functions and everything. So we are hoping the same for Pam. But we can't get that across to the MS Society," he says.
In a statement to CTV, the MS Society of Canada says that it honours the right of personal choice.
"We recognize that the decision to seek treatment of any kind is a personal one and we respect these decisions. The MS Society is committed to accelerating the research process so that we can get to definitive answers on CCSVI as quickly as possible," the statement reads.
Jamie Chalmers, a 40-year-old patient with relapsing-remitting MS, says these stories illustrate the cracks within the MS Society ranks. He hopes to try the liberation treatment at a U.S. clinic and finds the fact that MS community leaders are going for treatment a bit "shocking."
"When we see our chapter presidents going for liberation, they are basically breaking rank from their superiors. It tells us little guys: we have to break ranks too," he says.
Neither Goodwin nor Oirschot plan to quit their volunteer roles with the MS Society, but they say they are hoping their stories add to the discussion of whether the Society needs to change its position.
With a report from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip