Lyme Disease in Canada: A Federal Framework

Lyme disease report

Earlier this week, the federal Health Minister Jane Philpott tabled "Lyme Disease in Canada: A Federal Framework" in the House of Commons. This document is meant to establish a Canada-wide strategy for addressing the looming Lyme disease crisis.

For those chronic Lyme disease sufferers who were hoping that the framework would map out a course of action that would address their immediate healthcare needs, this document will be devastating. There's nothing in here to suggest that the plight of chronic Lyme disease sufferers will improve now or at any point in the foreseeable future.

Overall, the framework and accompanying action plan outline the federal government's plans for addressing Lyme disease in a way that can best be described as vague. It's ominous that the action plan itself spans not much more than a single page and speaks more in generalities than in specific action. And although my first impulse was to shrug and walk away, I'm instead going to highlight some of the items that caught my eye, keeping in mind that without any details about how any of this is going to be implemented, it's hard to make any definitive statements.

Improved statistical data
The official number of Lyme disease cases reported in this country is abysmally inaccurate and everyone knows it. The action plan includes a provision for capturing data on Lyme disease patients who do not fall into the existing criteria for confirmed and probable cases. There's no indication of how they intend to do this, so there's no way to predict whether their efforts will result in statistics that come close to the true number of Lyme cases in this country. But when you consider that a dart thrown at a random set of numbers would be more accurate than the current system of accounting, whatever they come up with is likely to be an improvement.

Analysis of the costs associated with Lyme disease
This kind of analysis is a long time in coming. There's no doubt that the cost of Lyme disease is considerable and will only get worse as time moves on. But again, no details are given and so it's unclear what figures will be included in this accounting. There are some important questions that need to be asked. Will the analysis only look at the direct costs to the healthcare system or will it also include the costs being incurred by patients funding their own care? Will it include loss of productivity figures? Will it include the costs associated with all diagnosed cases of Lyme disease or will it be restricted to just the ones in the confirmed or probable categories? If the analysis has any hope of being useful, it will need to address the entirety of the Lyme situation in Canada and not just a small segment of it.

National tick-borne surveillance system for Lyme disease and co-infections
About time. We know little about what is going on with Lyme disease in this country and even less about what's going on with co-infecting organisms. Data on Lyme bacteria is slowly being accumulated by various government, university, and independent researchers. But there has been surprisingly little data collection focussing on co-infecting organisms and there are quite a few of those. The more we know about what tick-borne pathogens are present in this country, where they are being found, and at what rates, the better doctors will be at determining whether a patient has acquired a single disease-causing organism from a tick bite or a complicated mix of organisms.

The recognition that tests with greater specificity and sensitivity are needed
It has been known for some time that current Lyme disease testing methods are not serving Canadians well and that doctors are relying on them far too often to rule out Lyme disease. As data continues to trickle in, it's becoming increasingly clear why the tests may be under-performing in Canada and continued research into Borrelia strain variation and the role it's playing in testing accuracy is included in the framework.

Chronic Lyme symptoms and treatment will continue to be evaluated
The section of the framework dealing with chronic Lyme disease is lacklustre and underdeveloped. Basically what it says is that the status quo will prevail until further research pinpoints the cause of chronic Lyme disease symptoms. Until then, the restrictive use of antibiotics outlined in the IDSA guidelines will continue to be the cornerstone of treatment. The biggest disappointment here is that no road map has been laid out for doctors to follow when formulating a strategy for dealing with their chronically ill Lyme disease patients. Short courses of antibiotics succeed in eradicating symptoms or they fail. If they fail, doctors and patients alike are hung out to dry. As a result, Lyme disease patients will continue to travel to the US or Europe for treatment, rely on alternative practitioners within Canada, or they will self-treat with all the risks that entails. Whatever they do for treatment, it won't be under the auspices of Canada's "universal" healthcare system.

In conclusion
When you consider that the single most important issue that the federal framework needed to address was how to deal with chronic Lyme disease sufferers who have to date been poorly served by the healthcare system, the failure to do so makes it hard to see the strategy in a positive light.

The framework is expected to be reviewed at some point within the next five years. Let's hope that review comes sooner rather than later. Because the way it stands now, by the time we hit the five year mark, there is a very real danger that Canada will have accumulated a massive number of chronic Lyme disease patients who will continue to be ignored by our healthcare system.

There are no safeguards in the current strategy that precludes that from happening.