Thank you, everybody. Thank you for giving the Canadian Lyme Disease Foundation this opportunity to speak before you today on this very important issue.
Thank you, Elizabeth May, for putting this important bill forward.
Bill C-442 is a very important first step toward developing a made-in-Canada solution to a very serious illness now affecting Canadians in the thousands. Lyme disease is a bacterial infection caused by a spiral-shaped organism called Borrelia, and we have many strains of Borrelia in Canada and North America. Therefore, Lyme disease is a Borreliosis.
The first case was confirmed in Canada in Ontario in 1977. Here we are in 2014, almost 40 years later, and we still do not have a good definition of what Lyme disease is. Tens of thousands of Canadians have been tested for suspected Lyme over the past decades and have been wrongly told they didn't have Lyme, based on a test that cannot look at all strains of Borrelia. Yet all research and testing has stemmed from only that one strain that is recognized in the current testing model. To date, it is that poor test that has defined what Lyme disease is.
It's been known for decades that we have multiple strains. They are not new, and more strains are still being discovered as technology improves. The Public Health Agency of Canada recently published a paper showing that we have a strain of Borrelia called miyamotoi, and we have that coast to coast. There currently is no human blood test for that particular strain of Borrelia that causes Lyme disease.
In reality, Canada has no idea how much Lyme disease is in our chronically ill population. An entire set of guidelines was created in the United States that revolved around that one strain, to the exclusion of all other strains. The U.S. guidelines were adopted overnight in Canada without any discussion except within a small group of individuals from within government and the infectious disease community, who were also in regular contact with that small group of their peers in the United States who created the now infamous guidelines.
We patients and our experts were excluded from those discussions despite our years of repeated requests to be involved. As a result, our hard questions were never considered and never heard. As a result, we have a much larger problem on our hands now.
The first Lyme society was formed in B.C. in 1989 by Diane Kindree. Another was formed the next year in 1990 in Ontario by John Scott, a researcher who has now since published many papers on Lyme disease, its genetic diversity, and how it is transplanted randomly in vast numbers by transplanting the ticks via migratory birds, both on the north-south migratory flyways and the east-west migratory flyways.
Since then, the victims of Lyme disease have been connecting with scientists and physicians around the globe, developing a great deal of expertise. We've pointed out many times since then that testing was flawed and that many Canadians were falling through the cracks—or actually, falling through the gaping holes.
It has come to our attention that there is this amendment to the wording of Bill C-442 changing the term “standard of care” to “best practices”. As soon as Lyme patients from across Canada heard that mentioned on television, we got inundated with calls and e-mails from patients. That term terrifies patients. Many years ago, without giving a fair hearing to the patients and their experts, those poorly contrived, narrowly focused guidelines were imposed and from that point forward were referred to as “best practices”.
People with Lyme disease became not only the victims of the disease, but they became the victims of best practices. The term best practices became the phrase most used in media and literature to simply quiet the discussion, as though some all-knowing group had everything under control. They did not, and we have a huge and growing problem in Canada and around the world. The U.S. government announced last summer that they had been underestimating the number of cases of Lyme disease: instead of 30,000 cases a year, there are 300,000 cases per year.
Patients were too lowly to be listened to, despite our warnings since the early nineties. In one letter sent to us here at CanLyme from the Public Health Agency of Canada, in response to our request to be at the table for policy and guideline discussions, we were told we were just an advocacy group, end of story.
We pointed out that we had expertise in all the necessary fields of science and medicine at our fingertips, and that we had a great deal to offer; still nothing.
We pointed out that we had a vested interest in what they were deciding, as we represent the most significant and important stakeholder—the victim—whose life is directly affected by what they decide; still nothing.
Best practices continued to be imposed upon the system, yet there was no diversity of opinion allowed in their creation. Diversity of opinion is the foundation of a healthy society.
Best practices for Lyme are currently wrong on many levels, yet any physician who dares operate outside of these best practices is immediately targeted and sanctioned. Less than 2% of all physicians are investigated because of their practices, yet almost 100% of physicians in Canada who dared use their best judgment on Lyme issues and not followed the poor best practices have been effectively shut down. The complaints in almost 100% of these cases against the doctors did not come from patients; they came from specialists who did not like their initial diagnoses being questioned. The complaints were specifically that the doctors were currently not following best practices.
Best practices currently trivialize the many symptoms caused by Lyme disease, labelling them in writing as the aches and pains of daily living.
These so-called aches and pains of daily living have been causing people to no longer be able to work or go to school. These aches and pains of daily living have been putting people in wheelchairs, continuing to confine them to bed, or, in an unknown number of cases, causing death.
These are hardly the aches and pains of daily living.
Best practices ignore the fact that thousands of Canadians have been misdiagnosed with having everything from multiple sclerosis, Alzheimer's disease, Parkinsonism, Lou Gehrig's disease, lupus, chronic fatigue syndrome, fibromyalgia, psychiatric disorders, various forms of arthritis, and many more, only to find out later it was treatable, chronic Lyme disease all along.
Best practices have allowed inadequate level-3 evidence to guide health care, when only level-1 evidence should be allowed where lives and health are at stake. Best practices have denied treatment for chronic Lyme disease because the best practice states there is no such thing as chronic Lyme disease.
Each committee member will be receiving a compilation of references to over 300 published papers that show quite convincingly that chronic, active, persistent Lyme disease, beyond short rounds of antibiotics, is very real. Best practices ignore and dismiss this body of research; no discussion allowed. Instead, they made up a name for symptoms after short-term antibiotics, calling them “post-treatment Lyme disease syndrome”, a term for which there is no research to support; no discussion allowed.
We haven't even identified what Lyme disease is yet, and we have not explored all the various strains of Borrelia for their response to treatment and for their broad symptomatology. Yet we have best practices in place and enforced.
Physicians refuse to diagnose and treat Lyme disease regularly by claiming they follow best practices. Tens of thousands of people who chose to ignore best practices now have their life back, including me and my daughter. My son didn't make it, though. He passed away in 2005. I contracted Lyme disease in 1991 in Dartmouth, Nova Scotia. My children contracted their infection in B.C. a decade later, along with other kids in our area, another of whom is deceased as well.
If this committee recommends the change of wording from “standard of care“ to “best practices“, we believe it must be made clear in the wording that there can be no best practices put in place without full participation and approval of the victims and their chosen experts. We cannot continue to allow the current autocratic system to further erode what should be a common-sense democratic process of evidence-based health care. That demands a diversity of opinion.
Bill C-442 is only a start, but it can be the hand that opens the door to a new era of cooperation and discussion. If we simply use the term best practices without open discussion and all-inclusiveness, then that door will quickly close again.
According to Health Canada, we have two million Canadians suffering from conditions of unknown origin, many of which, as I mentioned, are those misdiagnoses given to Lyme patients. We have no idea how many in fact have Lyme disease, but we do know that number is significant.
Those chronically ill people are also the biggest user group of our health care dollars. Many of those people have had their careers stopped short. That affects employers from coast to coast to coast. Still others will be unable to enter the workforce and will instead draw on our public disability payment systems.
There is much more needed to be done. Victims and their experts must be allowed an equal voice at all levels from this point forward.