Persons with Lyme disease, and their families can be faced with a devastating set of circumstances if the bacterial infection if not caught early.
The current health care system in Canada is set for failure when it comes to the all important early diagnosis, and once the disease has been allowed to disseminate unchecked or insufficiently treated early on, the late stage of the disease is completely mismanaged from coast to coast across Canada. Worst of all there is no mechanism to track the disease and it’s cost to society because the medical leadership deny the existence of chronic ongoing active infection despite the abundance of evidence based published peer-reviewed science.
Those medical leaders in Canada have for decades owned all aspects of this disease and have made a mess. Our tax payer funded Canadian Institute of Health Research (CIHR) continually funds indirect research that uses the same poor data that got us into this mess in the first place. Poor data in equals poor data out. It is a telling situation that CIHR stresses on one hand the importance of involving patients and their chosen experts at the earliest of stages yet we have been continually denied access to research direction and design relative to this disease. After the fact token review does not equate to collaboration.
Canadians must be alarmed. This is the fastest spreading infectious disease in the world and is occurring at rates that far exceed other diseases including breast cancer. We must stand together to insist that our medical leadership follow ethical and collaborative standards and that they stop making claims that are factually non-provable (ie. These patients are sick with something but it is not Lyme disease).
All Canadians need to be proactive and force the hand of those people who draw large salaries from our tax dollars to cease their exclusive ways and become completely inclusive and collaborative. Our provincial and federal legislators must set up appropriate oversight or laws if necessary that include patients and their experts. The notion that patients and their experts have no place in discussing and directing diagnostics and treatment has no place in healthcare and must stop as it is a recipe for continuing what has shown to have been a disaster for tens of thousands of Canadians, and these numbers continue to grow.
The Canadian Lyme Disease Foundation works with scientists and medical experts on several continents. It is time we were at the table for all Lyme disease diagnostic and treatment discussions, policy decisions, and research recommendations federally and provincially.
Jim Wilson (West Kelowna, BC)
President and Founder; Canadian Lyme Disease Foundation
Jim Wilson has been involved in networking with Lyme victims and providing information for over 20 years. He contracted Lyme disease in 1991 in Dartmouth, N.S. and his daughter contracted Lyme disease in 2001 in the Okanagan Valley of British Columbia.
With a background in investigating medical malpractice and legal liability matters, Jim provides unique insight into medical research from a perspective of conflict of evidence and works with medical and science experts around the globe.