Abstract
BackgroundIn 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and the associated treatment (“liberation therapy”) received little more than passing interest in the international scientific and medical communities, his ideas became the source of tremendous public and political tension in Canada. The story moved rapidly from mainstream media to social networking sites. CCSVI and liberation therapy swiftly garnered support among patients and triggered remarkable and relentless advocacy efforts. Policy makers have responded in a variety of ways to the public’s call for action.DiscussionWe present three different perspectives on this evolving story, that of a health journalist who played a key role in the media coverage of this issue, that of a health law and policy scholar who has closely observed the unfolding public policy developments across the country, and that of a medical ethicist who sits on an expert panel convened by the MS Society of Canada and the Canadian Institutes of Health Research to assess the evidence as it emerges.SummaryThis story raises important questions about resource allocation and priority setting in scientific research and science policy. The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made. It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and further emphasizes calls to improve science communication so as to support balanced and informed decision-making.
Highlights
In 2009, Dr Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS)
The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made
This paper addresses some aspects of this dynamic as it has played out over the past three years in Canada with regard to a controversial new treatment for multiple sclerosis (MS)
Summary
Politics and publicity—André Picard On November 21, 2009, the CTV network’s flagship newsmagazine broadcast a story entitled “The Liberation Treatment: A Whole New Approach to MS” [13]. Such early phase trials are generally designed to gather additional evidence in support of a promising hypothesis, and to see whether clinical equipoise can be established so as to justify a larger Phase III study In this case, while the available evidence was equivocal at best, approving a Phase I/II study provided a means by which to forestall some of the continuing political pressure. The current power of social media represents a whole new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which particular resource allocation and priority setting policy choices are made in scientific and medical research contexts, especially if political leaders begin to play more direct roles in such decisions.
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