Sunday January 21st 2018

The politics of CCSVI research in Canada

On Thursday the Senate Social Affairs, Science and Technology Committee was scheduled to go clause-by-clause through Bill S-204, a National Strategy for Chronic Cerebral Venous Insufficiency (CCSVI), before voting on it. The bill, sponsored by Liberal Senator Jane Cordy, called for accelerated pan-Canadian CCSVI clinical trials, a registry to track patients who went out of country for treatment, and assured medical aftercare in Canada. But there was no cause-by-clause reading. Instead, in a surprise move, the Conservative majority silenced debate and six-to-five voted down the bill. No surprise there. Amid much politicking, Bill S-204′s twin, Bill C-280, a private member’s bill proposed by Liberal MP Kirsty Duncan was quashed by six votes last February.

Of course, the chamber of “sober second thought” is supposed to exist above petty partisan concerns–and Santa really does exist. But the details of this particular Senate committee, which heard from vascular specialist Paolo Zamboni, who pioneered the CCSVI hypothesis, makes clear just how skewed the process can be. Earlier this month, Conservative senators unanimously refused to hear testimony from Canadians with MS, which shocked Cordy. “This is a patient-based system,” she says. “Why would the government silence the voices of the Canadians the committee was supposed to be helping?” (Patient testimony was invited when Saskatchewan was deciding whether to fund CCSVI clinical trials now taking place in Albany, NY.) Instead, the committee received written submissions from MS patients, many who’d had CCSVI treatment, some of whom had been denied medical aftercare in Canada.

There was concern voiced by some committee members that the summary report released Friday misrepresents the evidence presented. On the subject of aftercare being denied people who travel for CCSVI treatment, for instance, the report had this to say:

“Your committee also shares the concern expressed by proponents of the bill that, in the early stages, some patients were refused medical treatment after having experienced complications resulting from venoplasty performed in other countries. However, it should be noted that provincial health authorities and the colleges of medicine took quick action to ensure that no Canadians would be denied medical treatment.”

According to transcripts of the proceedings, Liberal Senator Art Eggleton was quick to object, noting committee witnesses told “numerous stories” of people who badly needed medical treatment and were not getting it: “Because they had gone overseas to get the procedure, they were not finding it very easy, if at all possible, to get follow‑up medical treatment here. Some of them ended up with some complications or just needed some follow‑up advice, but were being turned away. In fact, we heard that one person died as a result of this. Another person we heard was told to go back to Poland rather than being treated by a medical specialist here.” He added: “I am not aware of any evidence that came before this committee that indicated any action was taken. We certainly heard from medical professionals and professors that they thought that it was abhorrent that these MS patients who had gone through the procedure were not getting proper medical treatment.”

The concluding statement that “the best path forward should be determined by science and medicine, not by Parliament,” (which dovetails nicely with the Harper government’s increasing decentralization of health care), also met with opposition from the Liberals. Senator Larry Campbell called it ”completely hypocritical”–and incorrect: “Parliament deals with health matters all of the time,” he said. “We deal with drugs and we deal with issues involving health, even though it is a provincial responsibility. As far as this last paragraph is concerned, it would be nice if the government actually did rely on science for decision making, which we know is not true.” His coup de grâce: ”If this in fact is true, we should not have a Ministry of Health.”

The committee’s summary also suggest a willful blindness to the state of CCSVI research and monitoring in this country. That’s reflected in its statement that the interests of Canadians with MS are best served by “continued efforts on the part of the Government through the Canadian Institutes of Health Research Scientific Working Group and the Public Health Agency of Canada’s Canadian Multiple Sclerosis Monitoring System.” Anyone following CCSVI will know those efforts are all show, no action. The government proposed a monitoring system to track MS patients in early 2011 to be run by the Canadian Network of MS Clinics, the MS Society of Canada and the Canadian Institute for Health Information. This summer, a government spokesperson told Maclean’s it would be up and running in 2012. That’s a pipe dream. The ”Canadian Multiple Sclerosis Monitoring System” on the Public Health Agency of Canada website hasn’t been updated since Mar. 23, 2011. “It’s a work in progress,” says neurologist Anthony Traboulsee, the contact person for the Canadian Network of MS Clinics in an interview today with Maclean’s. And CIHR’s Scientific Expert Working Group, criticized for not having any actual CCSVI experts on it, isn’t even going to be around: it’s about to be shut down, according to Traboulsee who sat on the panel.

In a trifecta revealing of the tight network now adjudicating Canadian CCSVI research, Traboulsee, who’s also affiliated with the University of British Columbia Hospital MS Clinic, is the principal investigator overseeing Canadian phase I/phase II clinical trials scheduled to take place in four centres in three provinces. They were slated to commence Nov. 1 but that has been pushed back, Traboulsee says, due to procedural hurdles to overcome and additional ethic board approvals to be be passed. (That’s not counting the Quebec City and Winnipeg centres which have yet to pass ethical review boards, which could take months.) Traboulsee is “hopeful” patient enrollment will begin in Jan. 2013.

Kirsty Duncan, who blasted the government for refusing to hear from MS patients, is skeptical any progress is being made. “It’s all smoke and mirrors,” she told Maclean’s yesterday. It’s now more than three years since Zamboni’s theory made headlines, Duncan notes. And three years of resistance to a procedure covered by provincial health plans for people with venous malformation who have not been diagnosed with MS. ”We are no further along,” Duncan says. “We have announcements, that is it. Meanwhile, people’s lives are at stake.” She questions why the bill even made it to the Senate, given the deep-rooted opposition to it. ”Was that just for show too?” she asks. Whatever the intention, a show was definitely had. Just don’t believe the Senate committee’s own review of its performance.

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