On Monday, a group of Liberal MPs swung the ongoing debate over CCSVI treatment for MS patients back into the federal court, metaphorically speaking. At a press conference held in the Parliament Hill foyer, Liberal MP Kirsty Duncan announced a private members bill advocating clinical treatment trials would be tabled at the earliest possible date. Liberal Senator Jane Cordy plans to introduce a similar measure in the Senate.
CCSVI has been a political hot-potato since late 2009 when research by Italian vascular surgeon Paolo Zamboni identified venous blockages in the neck and chest of MS patients; clearing them with a basic balloon angioplasty, he reported, significantly reduced symptoms, even arrested the degenerative disease’s progression in some cases. Canadian MS patients, estimated to number between 55,000 and 75,000, who clamoured for testing and treatment were told it was not available. Many neurologists—along with the Multiple Sclerosis Society of Canada– expressed concern the procedure was unproven and risky.
Last August, the Conservative government accepted a Canadian Institute for Health Research panel’s recommendation that the feds not fund clinical trials. Provincial governments, which have jurisdiction over health care, have adopted an ad hoc approach: Newfoundland and Labrador is funding “observational studies,” Saskatchewan is funding clinical trials, and New Brunswick is creating a fund for residents traveling abroad for treatment. Meanwhile, more than 14,000 MS patients worldwide are estimated to have received CCSVI treatment. Many report profound improvements; a few report their health is unchanged; some report restenosis of veins; in tragic circumstances, a St. Catharines, Ont. man died after returning to a Costa Rica clinic for follow-up care.
In an email to Maclean’s, Duncan says it’s time the federal government stepped up on the issue: “We need federal leadership, and a nationally-funded, multi-centre clinical trial to determine if treating CCSVI will improve the quality of life for MS patients.” Clinical trials have been undertaken in other countries and credible, peer-reviewed studies have been published, she said in Ottawa yesterday: “Clinical trials have demonstrated the safety of this procedure. We can’t have proof without clinical trials and it seems like we’ve been in this box of discrimination.”
The Liberal politicians were joined by Canadian MS patients who have received treatment in the U.S., among them New Brunswick resident Tim Donovan, who is currently on a cross-country CCSVI awareness tour. A year and a half ago, Donovan was wheelchair bound; his future “was looking grim,” he told media. CCSVI treatment, which cost him $10,000, left him able to walk again without difficulty. “I have my life back,” he said. “I think caution is good but we need trials, we need treatments, we need to find out if this works.”
Liberal MP Carolyn Bennett expressed her party’s concern over the lack of follow-up care for and tracking of MS patients who travel abroad. It was a refrain voiced at the MS Society of Canada’s annual meeting in Toronto, a fractious event where one member angrily referred to Canadians’ exodus for CCSVI treatment as “the greatest medical refugee crisis of the Canadian healthcare system.” Outgoing board chair Linda Lumsden called CCSVI research “exciting” but expressed caution, noting preliminary results of research studies the charity has undertaken with its American counterpart would be ready in two months (final results are not expected until next year). These studies address issues surrounding CCSVI scanning only, not efficacy of treatment, patient advocates complain. MS patients do not have the luxury of time, Duncan stated: “Four hundred people die each year because of MS in Canada, and if we can improve their quality of life, we should be doing so.”