On June 3, 2010, Peter Liu, a scientific director of the Canadian Institutes of Health Research (CIHR) in Ottawa, sent an internal email outlining his thoughts on a procedure causing medical and political schisms—and inciting patient activism. Liu, head of the Institute of Circulatory and Respiratory Health, was responding to CIHR executives’ request for his opinion about chronic cerebrospinal venous insufficiency, or CCSVI, a condition identified by Paolo Zamboni in 2008. Zamboni, director of vascular diseases at the University of Ferrara in Italy, made headlines in Canada in November 2009 with his hypothesis that multiple sclerosis, long viewed as a neurodegenerative condition, had vascular roots and was linked to blocked veins draining blood from the brain and the spinal cord. He found venous angioplasty—sending a balloon to open an obstructed blood vessel—alleviated, even arrested, symptoms.
Zamboni’s pilot study yielded amazing results but lacked scientific rigour: it was small and non-blinded; no one could duplicate its results, including Zamboni. Still, it stirred rare hope among the estimated 75,000 Canadians suffering from the incurable, degenerative condition. By June 2010, many were travelling out of country, paying upwards of $10,000 for CCSVI scanning and treatment unavailable to them at home. Some returned with YouTube testimonials, others with dashed hopes, others with complications. The issue had become a flashpoint. People with MS were mobilizing for treatment. CCSVI was up for debate in the House of Commons. The CIHR, which hands out just under $1 billion annually for scientific funding and reports to Parliament through the Ministry of Health, was under pressure to act. Canada has one of the highest per capita MS populations: three people are diagnosed every day. Eight provinces wanted to co-fund pan-Canadian trials, according to CIHR documents obtained by Maclean’s under an access to information (ATI) request.
Liu’s response to CIHR executives was cautiously optimistic as he called for clinical trials. But his advice was ignored. Instead, as hundreds of pages of documents generated within the CIHR between June and September 2010 obtained under ATI reveal, the agency embarked on a process that was focused more on political optics than scientific results and, in hindsight, designed to reinforce the status quo.
These excerpts from documents obtained under an Access to Information request outline the Canadian Institutes of Health Research’s (CIHR) response to public and political pressure to research chronic cerebrospinal venous insufficiency, a new condition proposed by Italian doctor Paolo Zamboni.