‘Perhaps my advocacy will help to open the doors a little bit more, or will help to break down some of those obstacles that are holding people back from being able to have this treatment in their own country'
MS members pick surgery over waiting
October 13, 2010
Joanna Smith
OTTAWA BUREAU
OTTAWA—At least two members of the MS Society of Canada have decided to head out of the country to seek an experimental new treatment for multiple sclerosis against the advice of its national leadership.
The national organization that funds research into the debilitating disease joined the Canadian Institutes for Health Research in recommending against nationwide therapeutic clinical trials into the “liberation” procedure until it is scientifically and ethically advisable to do so.
That sparked an outcry among MS patients who had been lobbying hard to make the treatment available in Canada since Italian researcher Dr. Paolo Zamboni published results last year that raised high hopes for alleviated symptoms around the world.
About two weeks ago, rumours began circulating through the patient community that members of the MS Society were quietly going to get the procedure they told everyone else to wait for.
“Dirty little secrets,” was the title of a cartoon on the topic posted Oct. 2 to an online group for proponents of the treatment on the social networking site Facebook, with group members chiming in on the comments board to denounce the alleged hypocrisy by “big shots.”
Now it appears those accusations stem from decisions made by two volunteers who hold executive positions with their local chapters of the MS Society.
One of them is Julie Goodwin, a 42-year-old elementary school teacher with two young sons from Guelph, Ont., who will travel to Poland in early December to clear an apparent blockage in her left jugular vein.
Goodwin is the chair of the MS Society chapter in Wellington County and said she had not originally intended to share such a personal decision with the national leadership but now hopes that speaking out will help push things along.
“Perhaps my advocacy will help to open the doors a little bit more, or will help to break down some of those obstacles that are holding people back from being able to have this treatment in their own country,” said Goodwin, who has a progressive form of the disease that does not respond to medication.
Ken Mayhew, chief development officer of the MS Society of Canada, said the organization considers the decision to get treatment a personal one and does not presume there is unanimity among its volunteers and staff.
“I think that frankly that has helped in some respects to push the society towards the unprecedented steps it has taken to move forward around this research as quickly as possible,” said Mayhew.
Those steps include joining up with its American counterpart to fund $2.4 million worth of diagnostic studies exploring the link between blocked veins and MS, as well as committing another $1 million toward a clinical trial if and when one is developed and approved.
“I think it is actually fair to say that we have heard those voices,” said Mayhew, who said he is not aware of any high-level members seeking treatment but noted he would also not be privy to that kind of personal medical information.
Another local volunteer who is going against the national advice is Frank Van Oirschot, 70, vice-chair of the Chatham-Kent chapter of the MS Society. His 40-year-old daughter, Pam Lacek, has been suffering from MS for about a decade and is now living in a rest home.
He is bringing his daughter to get the treatment in Los Angeles at the end of the month.
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