With Minister of Health and Community Services Jerome Kennedy’s announcement last week about the province’s plans to help fund treatment trials for multiple sclerosis (MS), particularly what’s come to be known as the “zamboni” or “liberation” treatment, word from the MS community has been mixed, but mostly positive.
Newfoundland and Labrador joins other provinces in a pursuit to fund clinical trials that will help determine the success and necessity for a treatment many patients have spent significant amounts of money and time to pursue. The zamboni treatment (named for Italian Dr. Paolo Zamboni, who pioneered it) is not offered in Canada, and the testing to determine if one qualifies for it is not currently covered under the country’s medical plan. Yet, many MS patients from this province are spending their own money to travel to places like Poland, where the treatment is offered.
Now government has responded to critics who have been saying that it should take action, by announcing they will take part in funding clinical trials in Canada to determine if the results for the treatment are worth pursuing and covering under this country’s Medicare system. In the shadow of this announcement, some people who are associated with MS are speaking out.
Alex Harrold of Westport was diagnosed with MS in 1989 and has lived with the disease ever since.
Six of those years were spent representing Newfoundland and Labrador on the board of directors for the MS Society of Canada. He sees the announcement last week as a positive thing, but feels it isn’t enough.
“This is a step in the right direction, but clinical trials are still a time consuming process,” he said. “Right now, what people with MS really want is eligibility to have the testing done. They want to move ahead.”
While Mr. Harrold recognizes that testing isn’t going to come without some form of clinical trial, he feels that the anecdotal evidence for the treatment is overwhelming enough that government should be considering it more strongly when making a case for the zamboni procedure.
“At some point, anecdotal evidence becomes so overwhelming that to ignore it would be wilful blindness,” he said. “In some regard, I think that’s where government is, because they keep using the excuse that the results aren’t from a clinical trial – but when you have such overwhelming anecdotal evidence, you don’t really even need the clinical trial.”
Also taking into consideration that last week’s announcement was merely that government would help with the research and trials into the zamboni treatment – no amount of money was pledged, and no date has been set for those trials to began as of yet.
Mr. Harrold, and others, feel that government is taking too long.
“If they’re going to do the clinical trials, then at least couple that with testing people,” he said. “With 1,100-1,200 MS patients in this province, it would be the ideal place to hold trials, and at the same time determine how many people would qualify for this treatment.”
Mr. Harrold points out that this province should be leading the way when it comes to MS research with one of the highest populations of MS patients in the country, and Canada being one of the highest in the world.
Mr. Harrold says that he himself has been able to keep his spirits up despite his MS by remaining active and still working. Many who would be considered in better health than he is, he says, are not responding so well due to their lack of motivation and determination.
As he sees what has developed over the past several months with the new discoveries around the world, here at home Mr. Harrold remains a voice of reason for all those who aren’t in a position to travel thousands of miles for a treatment.
“With all the factors we have right now in this province, I see no reason why we can’t be at the top of MS research. We are a progressive nation – it’s ridiculous that we have to stand in line to go to Poland or India to do something that we certainly have the resources to do here.”
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