Lyme Disease Draft Framework needs more input from researchers, doctors and patients: advocates

(OTTAWA) – Lyme Disease researchers, doctors and patients are calling on Minister of Health Jane Philpott to update the Draft Federal Framework on Lyme Disease with the latest medical and patient best practices before it reports back to parliament.

“There was a clear sense of hope that emanated from the federally funded Lyme disease conference held in Ottawa last May,” said Jim Wilson, President of the Canadian Lyme Disease Foundation. “The sense was that finally the patients’ experts and the patients themselves would be engaged in drafting the federal framework outlined in Bill 442, the Federal Framework on Lyme Disease Act. But hope is fading. This framework is being written behind closed doors, which is contrary to all MPs and Senators who passed this Bill into law with the understanding that the Framework was to be consultative.”

Dr. Melanie Wills, Director of the Canadian Lyme Science Alliance (CLSA) and Professor of Molecular and Cellular Biology at Guelph University, said: “As a researcher in the field of Lyme disease biology, I am dismayed by the lack of scientific rigor, collaboration, and leadership demonstrated in this document. The Framework does not provide a balanced or holistic portrayal of the biomedical literature, nor does it capture the experiences and needs of Canadians who are suffering from Lyme disease. The CLSA strongly advocates a thorough, inclusive, critical, and transparent evaluation of all available meritorious scientific evidence, as well as meaningful integration of input from diverse stakeholders. We can, and must, do better.”

Dr. Liz Zubek, a family physician who specializes in the treatment of Lyme Disease, said: “This draft Framework tells me to follow outdated guidelines that haven’t been revised in over 10 years. There has been an explosion of research in the past decade and newer guidelines exist that include patient input. This draft Framework also suggests that, as a doctor, I should be satisfied with our inadequate Canadian tests for now, and that maybe in the future we will find improvements. This is, frankly, ridiculous.

“I urge the Minister of Health to reject the Draft Framework and insist on a real Canadian action plan for Lyme disease. This needs to be created in partnership with people affected by Lyme and those researchers and doctors who are actively attempting to treat them,” Dr. Zubek concluded.

Rossana Magnotta, President & Founder of the G. Magnotta Foundation for Vector-Borne Diseases, and a Director with the Canadian Lyme Disease Foundation, said: “We call on the Minister of Health to intervene and insist on patient experts being involved in the writing of the framework, even if that means delaying the report to parliament. This is the correct and ethical thing to do.”

Elizabeth May, Leader of the Green Party of Canada, said: “I remain very grateful for all-party support for my Bill C-442 in the 41st parliament. This issue remains non-partisan. I have confidence in Dr. Jane Philpott to hear the concerns of those in the Lyme-literate medical and patient ‎community, and to re-write the proposed framework."

Representatives from all parties were invited to the non-partisan media conference, and participants included NDP MP Tracey Ramsey, Critic for International Trade, and Conservative Senator Kelvin Ogilvie, Chair of the Senate Committee on Social Affairs, Science and Technology.

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