The federal panel that decided not to fund further clinical trials into the "liberation treatment" for multiple sclerosis should have included a broader membership, contend two researchers in a new editorial.
Dr. Andreas Laupacis and Dr. Arthur Slutsky, medical researchers at Toronto's St. Michael's Hospital and the University of Toronto note in the online journal, Open Medicine, that many MS patients were angry when a panel of experts from the Canadian Institutes of Health Research decided in September not to fund further research into the liberation treatment.
The CIHR panel decided there was "an overwhelming lack of scientific evidence on the safety and efficacy" of the treatment and that it would be unethical to study the procedure further beyond the studies already underway.
Laupacis and Slutsky note that among the panel's 15 scientific experts were three employees of the MS Society of Canada, five CIHR employees and only one unidentified MS patient. They write that not including more members of the public on such a sensitive, hot button issue was likely a mistake.
"By 鈥榤embers of the public,' we do not mean only patients with multiple sclerosis or advocates for MS patients, but also thoughtful citizens without MS who can consider all points of view, deliberate about them, and contribute to informed recommendations," they write.
"If half a dozen or so such individuals had participated in the deliberations, they might have asked questions about why proponents of the liberation procedure were not members of the panel," they write.
"They would have also helped decide whether and they would have contributed greatly to the discussion about the appropriateness of a clinical trial in the face of poor scientific evidence supporting the CCSVI hypothesis and uncertainty about the risks of endovascular therapy."
Proponents of the procedure complained after the CIHR decision was released that if the panel felt there wasn't enough robust evidence so far on the treatment or on the theory behind it (called CCSVI) CIHR should have funded its own studies to answer those questions.
Laupacis and Slutsky say that if more members of the public had participated on the panel, they would likely have encouraged the panel "to more fully articulate the reasons why a clinical trial should not (or possibly should) be conducted now."
They write that even if the panel has still come to the same conclusion that further trials were not warranted, "the very fact that members of the public were on the committee would likely have increased the legitimacy of the report in the eyes of the public (although not in everyone's)."
