OTTAWA -A year of attention on multiple sclerosis and a potential treatment for the degenerative disease has
been good for patients, the MS Society and a patient advocate agree.
The controversial CCSVI procedure, also known as the liberation treatment, theoretically unblocks neck veins to ease symptoms.
Last
year, Italian doctor Paolo Zamboni pioneered the procedure. The disease
was always thought to be a neurological disorder, but Zamboni suggests
some of the symptoms could be caused by blocked neck veins. The
procedure inserts a stent or uses an angioplasty to unblock them.A spokesman for the MS Society of Canada says it's been good to have so
much media and political attention focused on the disease.
"However it plays out in terms of whether CCSVI becomes a treatment for MS or
not, we've at least studied it," Stewart Wong said.
"Any efforts we make at furthering our understanding of any aspect of MS I think is a
positive thing and hopefully will lead to an accelerated process of
discovery."
Rebecca Cooney, who runs the MS liberation support group in Ottawa, says she's frustrated because angioplasty is an
approved procedure for other medical problems. She doesn't understand
why it's different for MS.
But the attention the issue has garnered has made for "an incredible year."
"In terms of public support it's been wonderful," she said.
"What's amazing to me is that it has stayed in the media so much. ... Every
month there has been almost one major shift in the story."
The liberation treatment isn't approved in Canada, although several
provinces and the MS Society are paying for observational studies to see
if patients who have the procedure outside Canada show improvement.
Patients who have gone to other countries and paid for the treatment say they see immediate and noticeable results.
MS symptoms can include extreme fatigue, speech impairment and paralysis,
but many say they have more energy and much less severe symptoms after
having the procedure. They're pushing for the federal government to
approve it before it's studied. For those facing a constant
degeneration, an untested treatment doesn't seem like much of a risk.
Doctors at the Canadian Institutes of Health Research said last summer there
need to be preliminary studies before starting clinical trials. Aside
from the risks that come with any surgical procedure, there's a chance
of clotting, or the stent can travel through a patient's veins and into
the heart.
After one Canadian died in October of complications following the procedure, the MS Society said it wants the government to
create registries for patients who have the procedure abroad, and to
ensure doctors don't deny followup care to Canadians who undergo CCSVI
abroad.
The attention on the liberation treatment is likely to continue in 2011, with the MS Society having committed to report back on
the seven studies they're currently funding. Earlier this month, the
government of Saskatchewan posted its request for proposals for $5
million it's offering to run clinical studies on the procedure.
Cooney says MS sufferers made a lot of progress through 2010, but Canada is on the wrong track.
"Especially for people who have progressive forms (of MS), where there's no other
treatment, because there are no drugs approved for progressive MS, why
can't you try this?" she said.
"They don't have any other choice."
laura.payton@sunmedia.ca
http://www.woodstocksentinelreview.com/ArticleDisplay.aspx?e=2905962