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Army of affected advocates continues to grow

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Every new day in one of the better medical dramas in recent memory, the debate over the future of multiple sclerosis, dubbed the "liberation war," gains another soldier.

This year, like hundreds of other Manitobans with MS, Kathleen Olson became one of them.

Just over a year ago, CTV's W5 investigative journalism series put a glaring spotlight on an Italian vascular surgeon, Dr. Paolo Zamboni, and the incredible results he reported in MS patients after the "liberation procedure," a simple angioplasty to force open narrowed veins in the neck and chest.

Olson, who has walked with a cane since 1999, still remembers the day the show aired. "I sat down, put my head between my knees, and took a deep breath," she says. "I saw the sun shining clearly for the first time in nearly 30 years."

In 1982, when she was just 24 years old and working her way through nursing school, Olson learned she had MS. At first, she went years between MS attacks; now, every day is a battle against the numbing exhaustion that is typical of MS.

For the single mom of a teen boy, those hurdles add up. Life isn't unbearable now, Olson says. But it might be. "It feels like my world is getting smaller and smaller," she sighs, a week before hopping on a plane to Albany, N.Y., to be tested and, maybe, treated for what Zamboni dubbed chronic cerebrospinal venous insufficiency, or CCSVI.

Since CCSVI blew up in the headlines, Manitoba's government and medical experts have urged caution while research comes in; there are still no clinical trials here. But there are patients, tired of patience, hopping planes in the hopes that the simple procedure will halt the progress of a disease sometimes too awful to bear.

Duncan Thornton, the co-founder of the advocacy group CCSVI Manitoba, estimates since he became the first Manitoban to be "liberated" in March, as many as 100 Manitobans have dropped tens of thousands of dollars to receive the procedure in Poland, India, the United States and elsewhere.

When they come back, their stories have helped impact the debate. "In the beginning of August... there was really compelling anecdotal evidence of people seeing positive results," Manitoba Health Minister Theresa Oswald recalls. "Listening to these very articulate individuals who have had in their view very profound changes, that compelled us to articulate at the national level (that) we can't just sit back."

By then, Oswald had been wrestling with the CCSVI issue for over eight months. Meeting frequently with doctors and unstoppable MS patient advocates, Oswald now says she was always on-board with the theory, if cautious.

And as a new year is upon us, only one thing is certain for the future of MS patients in Manitoba: if the trials don't come, the patients may just keep hopping on planes, bound for somewhere else.

 

-- With files from Mary Agnes Welch

melissa.martin@freepress.mb.ca

Dec. 14, 2009 -- At a public meeting, later broadcast online, the MS Clinic at Health Sciences Centre announces it will take a "wait-and-see" approach to the "Zamboni breakthrough." Many of the province's 3,000 MS patients express anger and disappointment.

March 25, 2010 -- At a clinic in Poland, author Duncan Thornton becomes the first known Manitoban to have the "liberation procedure." After returning to Manitoba, Thornton, 48, co-founds an advocacy group, CCSVI Manitoba, to promote access to the procedure he paid $10,000 for and tells the Free Press was "worth millions."

April 21 -- Thornton speaks to about 100 people at the first CCSVI Manitoba public meeting. He stands on a chair to speak; someone asks if he could have done that before the procedure. "Not without falling over," he says. Six weeks later, 200 people come to a similar meeting in Brandon.

May 5 -- At the legislature, CCSVI advocates launch their first rally, demanding the province support the procedure or its trials.

Aug. 4 -- Outside the annual premiers' meeting at the Fort Garry Hotel, CCSVI advocates protest what they say is a glacial pace of provincial action. Inside, Saskatchewan Premier Brad Wall pledges to fund clinical trials in his province.

Aug. 11 -- MobileLifeSciences, a screening clinic near the Manitoba-U.S. border run by ex-pat Winnipeg medical technologists, announces it will offer screening for blocked veins in MS patients.

Fall 2010 -- Provincial Health Minister Theresa Oswald publicly champions pan-Canadian clinical trials. At a health ministers' meeting in Newfoundland, she helps hammer out an agreement to lobby for them.

Sept. 20 -- About 60 people attend the second "Liberation Day" rally, where Oswald and opposition leaders speak.

Oct. 15 -- Oswald announces Manitoba will kick in $500,000 to a pan-Canadian clinical trial, if and when it happens.

Oct. 22 -- Provincial PC Leader Hugh McFadyen calls the government's response to CCSVI "slow and inadequate," urging Manitoba to join Saskatchewan in planning clinical trials.

Dec. 2 -- While provincial Tories continue to push for funding of clinical trials, some Manitobans with MS gather outside the legislature and report being denied follow-up care, such as blood-thinning medications, by Manitoba doctors after travelling abroad for the procedure. Oswald said medical staff have been given instructions not to shun patients.

Republished from the Winnipeg Free Press print edition December 27, 2010 A6

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