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.”