Mr. Speaker, it is my pleasure to rise to speak to Bill C-442, An Act respecting a National Lyme Disease Strategy, which has been tabled by my colleague from Saanich—Gulf Islands and seconded by my colleague from Vancouver East.
It is worthwhile noting that the House has looked at the question of Lyme disease in incremental steps since at least 2008. At that time, Judy Wasylycia-Leis, who is a former member of Parliament from Winnipeg North, called for a national strategy and by 2009 she was submitting order paper questions to find out more from the government about what it was doing, or perhaps better put, not doing.
As the successor to Jack Layton in Toronto—Danforth, it was of some interest to have discovered in correspondence provided to me by a constituent that on January 17, 2008, Mr. Layton had written to the Conservative minister of health at the time outlining the life circumstances of David Leggett, one of my constituents, who I rely on heavily in terms of his counsel on this issue.
To cut a long story short, Mr. Layton indicated to the minister that he had issued an information request under the Access to Information Act requesting results on the proficiency tests of a federal laboratory with respect to the ability to identify Lyme indicators in blood. The whole point was that the ability to do so was the key to early detection and therefore to effective treatment. There is this wonderful line in the letter, “The request for information was denied on the basis of national security. Neither Mr. Leggett nor I can understand the basis for this response”.
Although I am not here to explain or to talk further about why such a bizarre response to an information request on Lyme disease would have been received, it is rather indicative of the climate that patients, advocates and supporters have faced for a good number of years. There seems to be this bunker mentality in various quarters, and maybe as far back as 2008, that was shared by the Conservative government. I realize that things are moving ahead and that the Public Health Agency of Canada can be counted on more as an ally in this struggle. I hope that will lead to all members of the House supporting the bill from my colleague from Saanich—Gulf Islands.
Time is marching on. The Centers for Disease Control and Prevention in the United States has upped its estimate using a whole set of methods to approximately 300,000 Americans a year being diagnosed with Lyme disease. This is a 2013 analysis. From that, apart from the high incidence, it concludes that the CDC and other researchers must continue to identify novel methods to kill ticks and prevent illness in people. Lyle Petersen of the CDC said, “We need to move to a broader approach to tick reduction, involving entire communities, to combat this public health problem”. That is all well and good.
It is important to note the preventative angle. However, it is also, through my interactions with constituents, the whole question of diagnosis. Once people are unlucky enough to get infected, early diagnosis leads to them, potentially so early, to actually being able to prevent any effects, but within a short period of time that will be impossible. Therefore, to receive effective treatment has to be as much at the top of our agenda as the broader prevention.
It is also the case from recent research that it is very clear that the relevant ticks are moving north and that at some point in the next number of years the large majority of Canadians will live in high incidence zones. As I said, time is marching on.
My colleague from Saanich—Gulf Islands has devised something that is very much of a process, a process that will achieve something.
The first, or the central, pillar of the bill is the convening of a conference with all stakeholders within six months of the bill receiving royal assent to come up with a series of strategic outcomes, including, for example, establishing guidelines for prevention, diagnostics and treatment.
What I like in particular, and what I know people in the anti-Lyme disease advocacy community like most, about the strategy is how it makes sure to include the representatives of patient groups along with other experts in the medical community. From experience grows experience. I can attest to that in many conversations with David Leggett. From experience, he has insights that almost no member of the medical profession could hope to bring to the table.
I would like to share the stories of two of my constituents by way of bringing that home.
I am one of your constituents, living in the Danforth area, who has been battling Lyme for the last 7.5 years.
It took 5 years to receive a diagnosis, and now over 2 years of treatment to become more functionally stable. In 2011, I had to make the decision to go into massive medical debt in order to receive treatment - my Lyme literate doctor is located in New York.
I lost the ability to work 4 years ago. And, at this point, I'm quite scared about my future. I'm only 38. I've watched my 30s just rush by. I know that if I had received an earlier diagnosis, I wouldn't have had to experience such difficulty recovering.
I really don't want this to happen to any other Canadian. Lyme or no Lyme, all of us deserve medical care In our own country, and we deserve proper diagnostic tests and treatment. The current treatment guidelines for Lyme Disease in Canada, set by the College of Physicians, is an absolute joke. 30-days of antibiotic therapy is woefully inadequate: especially if a patient has been exposed to the Lyme bacteria for years. Personally, I didn't experience any noticeable, long-lasting symptom improvement until 13-months into antibiotic treatment.....
I recently calculated how much money I've had to spend on medical care in the last 7-years, and the total came to approximately $42,000. .... I want all MPs to know how incredibly expensive it is for Canadian Lyme patients to receive treatment. It never ceases to surprise me that I pay into a universal medical system (through taxes) that I have no access to. How crazy is that?
Donna also writes:
I am a Toronto-Danforth resident who knows only too well of the devastating (physically, emotionally and financially) impacts that lyme disease has on a person. I am also proof that there is a need for proper diagnosis and that extended treatment can be effective. I lost 5+ years of my life, and approximately $250,000 to the disease. I am (mostly) well again and have been very fortunate to have completed a successful return to work.
With respect to my (conservative) estimate of the cost, I don't want to mislead you...I was treated in the U.S., but those costs were only a small part of the actual costs.
I would end now by drawing on my constituent David Leggett whose insights I always welcome. He does say that when it comes to a strategy, something the NDP always emphasizes within the framework of collaborative federalism. In a recent note to me, he said:
Something to stress is the importance of working in lockstep with provincial government health ministries. To be truly effective, a national framework based on objective discovery, research, effective testing tools...training for doctors...and effective treatment regimes and timelines have to be set up and maintained.
Also, he says, echoing the other two constituents I just quoted:
—the fact that many lymies have had to rely on US laboratories and doctors for proper diagnosis and treatment. Without this support from beyond our borders (and mostly paid for out of pocket), the problem here would be borderline catastrophic.
The tabling of this bill is timely. It is needed. I congratulate and thank my colleague, the member for Saanich—Gulf Islands, for doing so. I fully intend to support it. I hope the strategy that does emerge from this, because I do have great hope that colleagues from across the way will also support it, will in fact make a big difference in what is likely to be a growing health issue for Canada in the years ahead.