The silent treatment: How Canada has failed MS sufferers

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Beatrice de Gea/The New York Times

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 schismsand 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 angioplastysending a balloon to open an obstructed blood vesselalleviated, even arrested, symptoms.

Zambonis 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 byMacleansunder an access to information (ATI) request.

Lius response to CIHR executives was cautiously optimistic as he called for clinical trials: My own interpretation of the data is that CCSVI is likely a contributing factor in a restricted subset of MS patients, he wrote. We need a much larger multi-centre trial, including merging some of the ongoing trials, or developing patient selective criteria to narrow down to [a] group that will respond.

Lius 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.

The initial call for CCSVI research was showy. In November 2009, Yves Savoie, CEO of the Multiple Sclerosis Society of Canada, invited proposals. In May 2010, the society committed $700,000 to a US$2.4-million, two-year project with its U.S. counterpart: seven studies looking at the relationship between vein anatomy and MS. Treatment studies would await results. Savoie also called on the feds to invest $10 million: It is obvious that the relationship between CCSVI and MS requires further investigation, he said.

The feds appeared willing. On June 15, 2010, CIHRs president and CEO Alain Beaudet spoke before a parliamentary subcommittee looking at CCSVI; he boasted of the CIHRs patient-based research and urged researchers to apply for targeted grants. Research into clinical treatment has to be accelerated, he said, noting an August meeting at the CIHR would review how best to accelerate research and innovation in MS.

But research wasnt accelerated; it was stalled. No grant proposals met the CIHRs criteria. The August meeting ended with a decision not to fund clinical trials. There wasnt enough evidence to proceed, according to a press release. Not mentioned was the fact the CIHR didnt have the money to fund clinical trials; it was overcommitted by $10 million for the year. Only in June 2011, a week after Liberal MP Kirsty Duncan announced plans to table a bill calling for a national CCSVI strategy that threatened to turn the issue into a political football, did the CIHR find evidence to justify trials. Five months later, it called for proposals. On April 18, 2012, Health Minister Leona Aglukkaq announced one had been selected. The researchers identity will be revealed if and when ethics approval is granted, a CIHR press release offered cryptically.

Meanwhile, an estimated 25,000 CCSVI treatments have been performed worldwide; how many on Canadians is unknown. A registry announced by the CIHR in March 2011 will be running by the end of the year. Three deaths have been reportedtwo Canadians and one Americanalong with complications and reports of the dangers of using stents to keep veins open, contrary to Zambonis protocol. The situation is at a crisis pointwith desperate patients travelling for treatment that may or may not benefit them, and the MS Society advising people with MS not to be examined or treated for CCSVI outside an established research protocol, which doesnt exist in Canada.

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The silent treatment: How Canada has failed MS sufferers