The "Conference to Develop a Federal Framework on Lyme Disease" ended on Tuesday with a recognition that public health policy on Lyme disease has fallen far short of what Canadians demand. As conference co-chair Dr. Gregory Taylor put it, "If what we are doing is not making a difference to individual Canadians, it's not good enough." And it was clear to everyone that what health authorities have done for Lyme sufferers so far is not nearly good enough.
From the conference's outset, it was obvious that a great deal of thought had gone into figuring out how to bring together a diverse group of people - patients, advocates, doctors, scientists, researchers, and politicians among them - with widely varying views on Lyme disease without the process bogging down in anger and frustration. Facilitators were clearly experienced in conflict management and did what has to be described as an admirable job of keeping the conversation on track and moving forward when the opposite could so easily have been the case. That does not mean there weren't flare ups - of course there were - but never to the point where the conference derailed.
Discussion focussed on three key areas: Surveillance, Guidelines and Best Practices, and Education and Awareness. Here, in no particular order, are a few of the highlights:
1. The national reporting system has failed.
The one thing that all conference participants could agree on is that we have no idea how many people in Canada suffer from Lyme disease. And unless significant changes are made, we never will. Although doctors are expected to report any patient they diagnose with Lyme disease to public health authorities, they are fairly universally failing to do so. With few exceptions, the only Lyme disease cases public health officials are aware of are the ones where patients came up positive on standardized tests here in Canada. Clinically diagnosed cases are not included in the numbers to any significant degree. Nor are cases diagnosed by doctors in the United States or naturopaths here in Canada. In short, most cases of Lyme disease in this country go unrecorded, resulting in an official body count that reflects only a small fraction of the total number of diagnosed Lyme cases.
2. Surveillance data is being applied inappropriately.
Researchers expressed consternation that their data has been misused by both doctors and insurers to exclude people not living in known endemic areas from being diagnosed with Lyme disease. Surveillance data, they point out, was never intended to be used in diagnostic situations and for a very good reason: Most of Canada has never been surveyed for the presence of Lyme infected ticks. For the majority of regions, there isn't enough data to state whether that region carries a high or low risk for Lyme infection. As one researcher put it, "Absence of proof is not proof of absence." What existing surveillance data does show is that it's possible to contract Lyme disease anywhere in Canada, that no region can be considered zero risk, and that Canada's geography is so vast that active, ongoing surveillance of all regions is impossible, meaning that we will never have a surveillance map of Canada that contains up-to-date data for all regions.
3. Existing clinical guidelines are not useful for chronic Lyme disease sufferers.
There are several problems with the existing clinical guidelines. Top of the list has to be that surveillance criteria is being used to clinically diagnose Lyme disease. Why is this an issue? Because surveillance criteria is deliberately restrictive so that only unequivocal cases of Lyme disease are included in the research that will be used to help form public health policy. Probable and possible cases of Lyme disease are excluded (or at least recorded separately) since they could taint the data. For surveillance, this is important. For diagnosis, however, it's much more important that all of the probable and possible cases of Lyme are identified and that appropriate treatment is immediately administered. This currently is not happening in Canada. A second glaring problem with existing guidelines is that they do not give doctors clear guidance for what to do with patients who have been treated with a short course of antibiotics and are still experiencing symptoms. As a result, Canadian Lyme disease patients often find themselves with no further treatment options, no long term plan for managing their symptoms, and a diminished quality of life.
4. Canadians are woefully uninformed about Lyme disease.
For years Canadian researchers have been warning anyone who will listen that a Lyme disease epidemic is on the way, but those warnings have failed to gain any significant traction. The average Canadian has no idea that Lyme disease cases have started to skyrocket as the ticks that carry the disease spread rapidly across this country. We have already seen a significant increase in the number of high risk areas within major cities and yet the Canadians living in those cities are largely unaware of it. As a result, very few can name Lyme's major symptoms and virtually no one in Canada takes precautions to protect themselves from a Lyme infection. Lyme is only a preventable disease if people know when they are at risk and take appropriate action. That currently is not happening.
5. Lyme disease sufferers need help and they need it now.
Not six months from now. Not a year from now. Now. And Lyme patients were very clear about what kind of help they need: Better treatment options, long-term symptom management, access to knowledgable doctors, publicly funded complementary therapies, better recognition of the role of co-infections, disability payments, and the immediate eradication of the stigma associated with the disease. No one could possibly walk away from the conference with a cloudy notion of what Lyme disease sufferers want and need in order to cope with the day to day challenges of this poorly understood disease.
The conference ended with the suggestion that a federal framework on Lyme disease could be hammered out fairly quickly. But it also ended with few answers, no details, and little in the way of firm commitments. And although it was noted that some of the changes Lyme disease patients are looking for could be put in place without much delay, it was also abundantly clear that several issues presented problems for which health officials did not currently have answers.
So the success of the conference remains to be seen. The ball, as they say, is now firmly in their court and Lyme disease sufferers must once again wait, with all of the patience they can muster, to see what happens next.