Bill C-442 (Historical)

National Lyme Disease Strategy Act

An Act respecting a National Lyme Disease Strategy

This enactment requires the Minister of Health to convene a conference with the provincial and territorial ministers responsible for health and with representatives of the medical community and patients’ groups for the purpose of developing a national strategy to address the challenges of the recognition and timely diagnosis and treatment of Lyme disease. It also authorizes the Minister of Finance to establish guidelines in respect of the allocation of funding to provincial and territorial governments that have enacted legislation to implement that strategy.

National Lyme Disease Strategy Act

[Jean Crowder, NDP, Nanaimo—Cowichan, BC]

Mr. Speaker, I too am pleased to rise in this House today to speak to Bill C-442, because like many other members in this House, I have constituents who have suffered from Lyme disease. Sadly, for many constituents, it has taken them months if not years to get an adequate diagnosis. In the meantime, their lives have been lives of misery, as they simply have not been correctly diagnosed or have not received the proper treatment.

Bill C-442 aims to track the incidence rates, create educational materials to raise awareness about Lyme disease, establish testing and treatment guidelines, and track the related economic impacts of Lyme disease. It would also support the research and implementation of better and more reliable diagnostic testing and increased education and awareness among physicians.

I want to turn for a moment to a Globe and Mail article that was in the paper on April 27. The headline was “Lyme disease on the rise in Canada, linked to ticks”. The subheading is, “This is the first in a series examining health repercussions for Canadians due to a changing climate. First up: Lyme disease”. In the article, the writer notes:

Most Canadians think of Lyme disease as a rare illness that afflicts hikers bitten by ticks in the deep woods. Infected individuals develop a bull's-eye rash and go on antibiotics for a few weeks to clear it up. Problem solved.

The trouble with this picture—promoted for years by Canadian health authorities—is that it does not begin to capture the true threat of Lyme disease, which in its chronic form can turn into a life sentence of debilitating joint pain and neurological problems. Disease-carrying ticks in Canada have increased tenfold in the past two decades, spread by migratory birds and nurtured by warming climates that allow them to thrive in our own backyards. While reported cases jumped 146 per cent between 2009 and 2012, advocates say that testing is inadequate and doctors lack awareness of Lyme, resulting in gross underreporting and under-diagnosis of this rapidly emerging infectious disease.

I can certainly say that on Vancouver Island, some of the response from the medical community has been that Lyme disease does not exist on Vancouver Island, so someone could not possibly have Lyme disease. Of course, when some of the constituents were able to get the testing, outside of Canada, sadly, spending thousands of dollars, it was demonstrated that they did in fact have Lyme disease and then needed to be on prolonged courses of antibiotics to deal with it.

Later in the article, it says:

Detecting Lyme disease is an evolving science, however. Recent studies have shown that different strains of Borrelia, the bacteria that causes Lyme, may target different organ systems, triggering a variety of immune responses. While the responses vary, one strain alone can affect skin, joints, the heart and nervous system.

Canadian health authorities recognize the need to detect different strains of the bacteria, the PHAC [the Public Health Agency of Canada] said in a statement, adding that Canadian labs are using “updated screening tests that are reactive to a much broader range of Borrelia strains”.

Mr. Wilson is with a not-for-profit organization that has been trying to raise awareness. The article continues:

But Wilson said that from what he has heard in the Lyme community, Canadian patients are still being offered the same old tests. The standard Western blot test detects only a lab strain of Borrelia and its close cousin.

The second test, known as the ELISA, isn't sensitive enough to distinguish Lyme from such illnesses as lupus or rheumatoid arthritis, according to Dr. Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University.

Both are known to have “significant limitations,” Fallon said.

Newer tests available at private U.S. labs can detect all strains and species of Borrelia bacteria. Although these tests have their own pitfalls, “they're really an improvement on the standard tests,” said Fallon, who saw no reason why they should not be widely used in Canada.

The article concluded by stating:

Unless Canada starts doing a better job at detecting Lyme disease..., “we're going to continue to have most people in the chronic category, because they're just not being picked up.”

This has a devastating effect. Certain people talk about the economy, but it has a devastating effect on people and their lives and on their families.

Part of the challenge with this is that, as I mentioned, in Canada, many patients report issues with the testing and treatment for Lyme disease. The different types of blood tests performed to identify Lyme disease often yield inaccurate results. This may mean that patients who in fact have Lyme disease are not diagnosed, or even more worrying, are misdiagnosed with multiple sclerosis or chronic fatigue syndrome and do not receive the appropriate treatment, exacerbating their symptoms. Some patients even have to travel to other countries to receive treatment, because it is inadequate in Canada.

The NDP believes that this bill would improve the treatment and outcome for Lyme disease sufferers. Canadians need a national strategy on Lyme disease to ensure that the testing and treatment options in Canada are improved. Therefore, we support this bill and believe it lays out a concise plan for educating Canadians about the disease and, more importantly, providing a better quality of life for Lyme disease sufferers.

To provide a bit of background on it, this disease is spread by tick bites. Ticks are small parasites that feed on the blood of animals and humans. They pass on Lyme disease when they feed on mice, squirrels, birds, or other animals who carry the bacterium and then bite humans.

Ticks are most common during the warmer months, from spring through to late autumn. Canadians who live in areas that have mild winter temperatures and minimal snowfall have an increased risk of coming into contact with ticks, which is a description of the climate on Vancouver Island. Climate change is one of the factors causing more regions to be at risk, with warmer weather increasing tick distribution across many parts of Canada.

I have been working on this file for a number of years. Back in 2010, I had written a letter to the then minister. We had a back and forth with a number of letters. I had written a follow-up letter asking for further clarification and action because part of the response from the government was that treatment and diagnosis is a provincial responsibility so there is really not much role for the government. I was trying to argue that of course there is a role for the federal government, and part of that role is around leadership. However, I reminded the minister that the federal government has a clear role to play in establishing the guidelines and that it is within this area that most action needs be taken.

I went on to remind the minister that the Canada Health Act's principle of reasonable access to health services without financial or other barriers is an important aspect of what Canadians expect in our publicly funded, publicly delivered health care system and that when we were seeing unequal access or seeing Canadians have to go out of the country in order to get adequate testing, that is absolutely a financial barrier.

I went on in the letter to say:

A number of studies have concluded that the tick vector is spreading rapidly in Canada, a process likely to be accelerated by climate change. Without current, up-to-date information about the geographical distribution of tick vector populations, doctors may falsely discount a possible Lyme disease diagnosis, and thus deny serological testing. In addition, the tick vector is also carried by migratory birds, and is therefore not isolated to any geographical region.

I quoted from an article published in the Canadian Medical Association Journal in 2009, entitled, “The emergence of Lyme disease in Canada”, stating:

...“effective enhanced surveillance involving federal and provincial agencies needs to be instigated and that clinician awareness of Lyme disease will be crucial in minimizing its impact”…as it is an emerging disease in Canada.

Further on I state:

Ultimately, Canadians are receiving inadequate care or no care at all when it comes to Lyme disease, forcing them to leave the country to seek medical attention. This is a direct denial of their rights. New national guidelines must be put in place to address this serious contravention of the Canada Health Act. Canadians should have confidence in their health care system.

Based on recent studies, the current Guidelines simply do not take into account that Lyme disease is emerging in Canada and that geography cannot be relied upon to diagnose Lyme disease. In addition, the two-tiered testing is fundamentally problematic as it excludes many patients who have Lyme disease from the more sensitive...testing...

In the response from the minister of September 15, 2011, it was interesting that the she indicated this in the letter:

Climate change is anticipated to accelerate the emergence of Lyme disease in Canada. Endemic Lyme disease risk occurs in much of southern British Columbia, but the vector here is less efficient, and risk is relatively low.

Therefore, even a couple of years ago the minister is indicating at that point that the risk was relatively low. I would argue that, because the government was not doing the kind of surveillance and follow-up that was required in order to determine the real incidence, people were simply being excluded.

There have been some changes. Although the government has moved to look at making this a nationally reportable disease in Canada, many people simply do not trust those numbers. Therefore, I will certainly be supporting Bill C-442. I want to commend the member for Saanich—Gulf Islands for bringing this matter forward. It is a very important matter for us in Nanaimo—Cowichan and the rest of Canada. I would encourage all members of this House to support this bill and let us get on with developing that national strategy that is so important for our constituents.

[Irwin Cotler, Liberal, Mount Royal, QC]

Mr. Speaker, I am pleased to rise to join in the debate on Bill C-442, an act respecting a national Lyme disease strategy. I commend my friend, the hon. member for Saanich—Gulf Islands for bringing forward this important bill that proposes the development of a national strategy in response to a growing issue of national concern.

I cannot overly stress how important this debate is, as well as its personal significance for me. As some members of this place may recall, a few years ago my daughter became ill. She had unexplained pains and symptoms of the kind and character that have been described by other members in the House in this debate that led her from doctor to doctor and diagnosis to diagnosis without any relief in sight.

It was a stressful and traumatic time for our entire family, a period and sense of both hopelessness and helplessness. Hopelessness on the one hand because it was unclear what the correct diagnosis was in the place of competing diagnoses, or the absence of any diagnosis at all, and helplessness because it was difficult to watch my daughter struggle and not be able to help in any way.

As is too often the case, one only learns the intricacies of a disease when one is confronted with it. That was my experience with Lyme. When my daughter's purported diagnosis came I read as much as I could about the disease and was shocked at the Canadian experience with the disease when compared to the American one. Indeed, at the time I learned that there was already a U.S. Congressional caucus discussing this issue, and that there had already been proposed legislation introduced south of the border, while the debate had hardly begun in this House at all.

While many statistics have been quoted in the debate here, I would like to take a slight step back to note how Canada has been behind when it comes to Lyme disease. Here, I refer everyone to a response tabled by the government on November 15, 2011, in response to an order paper question from my colleague and friend, the member of Parliament for Etobicoke North. In that answer the government said:

The percentage of Lyme disease cases thought to be reported is unknown at present as Lyme disease has only recently become reportable.

Recall that was in 2011. Now less than three years later we know the reported cases of Lyme in Canada jumped 146% between 2009 and 2012. According to the Public Health Agency of Canada, 315 cases of Lyme disease were reported in 2012. According to CanLyme President Jim Wilson, the actual number is likely to be in the thousands given the massive under-diagnosis and under-reporting of the disease. The first reported case of Lyme disease in Quebec was in 2004. It was not until 2008 that the first case was confirmed inside the province.

Referred to as the “great imitator”, Lyme poses great difficulties for medical practitioners because it presents symptoms that are quite nebulous. Indeed, symptoms include joint pain, headache, and fatigue and these can easily be mistaken, and often are, for other illnesses.

Moreover, tick bites often go unnoticed and it is therefore difficult for doctors to recognize early stage Lyme based on initial symptoms that are generally associated with more benign conditions like the flu. It can also be very difficult to diagnose Lyme in children, who may not notice or communicate that they have been bitten by a tick. Indeed, in one recent study published by the journal Arthritis & Rheumatology, the first such study to identify the effects of untreated Lyme infection in children, researchers found that 76% of patients did not recall even having a tick bite.

If diagnosed early and treated with antibiotics within the first six weeks of an infection, the chances are high that a Lyme disease patient can achieve a full recovery. However, if left undiagnosed, the disease can quickly escalate: patients can develop a variety of neurological symptoms and are much more likely to develop debilitating and chronic conditions including arthritis and even facial paralysis. Currently, researchers at a new Lyme disease research facility, funded in part by the non-profit organization CanLyme, are preparing to use genetic testing to determine the extent to which some chronic diseases such as multiple sclerosis, fibromyalgia, and Alzheimer's may in fact be the result of Lyme or other tick-borne infections.

It is clear that my background is not in medicine. Yet I understand as others in the House have said that much research remains to be done and the medical community itself is engaged in a debate over Lyme disease and its impacts over the long term.

This is in part what makes the bill so important. It allows medical professionals to share with each other and with policy-makers across the country at the federal, provincial, and territorial levels their evidence and best practices in order to facilitate a standardized approach to diagnosing and treating this disease.

In particular, the bill would require the Minister of Health to convene a conference bringing together his or her counterparts, representatives of the medical community, patients' groups, and other stakeholders to discuss this important issue. Through collaboration with the provinces and territories and medical professionals, this bill would result in the development of a national strategy to address the challenges posed by the growing risk of exposure to Lyme disease in Canada. As has been acknowledged during previous debate on this bill, Lyme disease poses a major health problem about which Canadians are not sufficiently aware and for which we remain still ill-prepared.

Other members in this place have acknowledged the laudable intent of this bill, which the member for Saanich—Gulf Islands detailed in her remarks and has spoken to as eloquently as one could. As she explained, this is a bill that would deal with the threat of Lyme disease by creating a national surveillance system to address the problems of under-reporting and misdiagnosis, which we know can have severe consequences. It would also strive to achieve the sharing of best practices by medical professionals and ministers of health in the provinces and territories.

Before I close, I would like to draw attention to one other aspect of this national health crisis, which is the extent to which communicable diseases are inextricably intertwined with our natural environment. The recent explosion of the incidence of Lyme disease is tied to changes in climate and land use that can be difficult to track and may be overlooked by both medical practitioners and policy-makers. Indeed, the recent report by the Intergovernmental Panel on Climate Change specifically noted:

Substantial warming in higher-latitude regions will open up new terrain for some infectious diseases that are limited at present by low temperature boundaries, as already evidenced by the northward extensions in Canada...of tick populations...the vectors for Lyme disease...

Indeed, there are myriad unforseeable ways that climate change and other environmental concerns may affect public health. While this example is apparent now, there will be other such occurrences and we need to make sure that we take a holistic approach to understanding and responding to these types of threats.

Public health concerns of this kind, which require collaboration and education to achieve prevention, are perfectly suited for a co-ordinated federal framework to achieve, as the bill before us expressly sets out, increased public awareness, consensus for best practices, and an up-to-date understanding of emerging evidence regarding how this disease operates.

I trust that the members in this place will join in supporting this initiative by voting for this bill, thereby sending a clear message to Canadians that we are listening to their concerns, we are seeking to do what we can, and that we will act.

In closing, may I add that the member for Saanich—Gulf Islands' initiative in this regard is already having a positive influence. Indeed, just by debating this bill in a multipartisan matter, we are raising awareness and signalling to Canadians that this is a public health issue of national concern that deserves urgent attention and action.

I further trust that we will all join in supporting this bill so that we can take action to find the necessary solutions for the suffering of thousands of Canadians. It is a sad reality, as I indicated at the outset, that Lyme disease remains massively under-diagnosed and largely misunderstood, with the U.S. and Canadian experience differing in this regard. Cases have been skyrocketing along the U.S. side of the Vermont, New York, and Maine border with Quebec, though it should be clear that ticks do not stop at the border, as it has been said in this debate. Indeed, the prevalence of disease-carrying ticks in Canada has increased tenfold over the past two decades and there is just cause for great concern.

I am hopeful that in working together to address the situation, and with excellent bills like this going in the right direction, we will succeed in a common cause. May I conclude, again, by thanking the leader of the Green Party for this important initiative. I join again with all members in this place in expressing our sympathy and solidarity with those suffering from Lyme disease, as well as our support and appreciation to the doctors, nurses, and researchers seeking to combat Lyme disease and treat those afflicted with it.

[Djaouida Sellah, NDP, Saint-Bruno—Saint-Hubert, QC]

Mr. Speaker, I am honoured to speak to an issue as important as Lyme disease. I would like to acknowledge the work of my colleague from Saanich—Gulf Islands in bringing forward this very important initiative.

This disease is spreading in Canada, and it is expected to continue to spread in years to come. That is why we have to act quickly. Bill C-442, the bill introduced by my colleague, is a step in that direction.

As was said before, Lyme disease, caused by the bacterium Borrelia burgdorferi, is transmitted through tick bites. In addition to causing serious symptoms, the disease can cause serious health consequences, affecting the joints, the heart and even the nervous system.

In Canada, ticks that can transmit Lyme disease are found in the southern parts of Manitoba, Ontario and British Columbia, as well as in some regions in New Brunswick, Nova Scotia and Quebec. In Quebec, ticks that carry the bacterium are found in the Montérégie region in particular.

The Bulletin québécois de vigie et d'intervention des maladies infectieuses, produced by the Bureau de surveillance et de vigie of the Direction de la protection de la santé publique, shows that there has been a significant increase in the number of Lyme disease cases in Montérégie.

In 2012, the number of cases increased considerably, going from 16 in 2007 to 43 in 2011. My riding is in that region, and I am greatly concerned by Health Canada's inaction in containing the spread of the bacterium.

Today, Mont-Saint-Bruno is a risk area, where many ticks spreading the disease can be found. We must start a national campaign to warn Canadians that these ticks exist in their region.

As early as 2008, a New Democratic member of Parliament, Judy Wasylycia-Leis, was asking the minister of health to implement a strategy to protect Canadians against an increase in the number of cases of Lyme disease. Her requests fell on deaf ears. However, five years later, we are seeing the disease progress exponentially.

At the time, the government turned a deaf ear. Now it can no longer deny the urgency of the situation. Lyme disease will continue to spread, because it goes hand in hand with global warming. Winters are not as cold as they once were, allowing the ticks to survive more easily. Inevitably, more places will become risk areas.

We must therefore be proactive in establishing a national medical surveillance program to track incidence rates, a solution proposed in Bill C-442.

Since 2009, Lyme disease has been a nationally reportable disease. That means that all medical professionals must report cases of Lyme disease to the Public Health Agency of Canada through the provincial public health system. This imperative must go hand in hand with preventive measures and programs tailored to public health needs. However, nothing specific has been done to date.

We have heard testimony from those suffering from Lyme disease who have had to deal with ignorance of the disease on the part of some doctors. The observation is alarming, but doctors are overlooking the disease because the blood tests used to diagnose it are very unreliable.

Existing diagnostic tests are effective when Lyme disease is spread, but not when it is in the early stages. Furthermore, people with Lyme disease are often misdiagnosed.

A number of specialists believe that the ELISA tests used in Canada are inadequate. A recent study at Johns Hopkins University, one of the most prestigious medical schools in the United States, showed that the ELISA test protocol for Lyme disease could not even detect the disease in 75% of patients. That is not right. The federal government needs to show some leadership on health care and needs to find ways to better protect Canadians' health by coming up with more effective and efficient solutions.

Canadians need a national Lyme disease strategy, which is why I strongly support Bill C-442, which was introduced by my colleague. This bill is effective. It proposes some guidelines for preventing, diagnosing, treating and managing the disease, as well as for creating and distributing educational material for health care professionals.

There is little documentation on people affected by Lyme disease, and their health care is often mismanaged. Research to improve the diagnostic process should be a priority so that we can prevent incorrect diagnoses.

Such a strategy has been needed for a long time. Canadians' health cannot take a back seat. The government needs to roll up its sleeves and work with the provinces to adopt measures to control this pandemic. Now is the time to take action. I fully support Bill C-442, and I urge my colleagues to do the same.

[Elizabeth May, Green, Saanich—Gulf Islands, BC]

Mr. Speaker, I would like to thank all of my House of Commons colleagues. It is a great honour for me because this bill has received support from all of the parties in the House.

I am quite overwhelmed with gratitude for this effort to bring forward something in a non-partisan spirit to help people across Canada who have been exposed to bacteria-bearing ticks and who have, as a result, suffered from Lyme disease. They are going to have help.

The fact I brought forward the bill in a non-partisan fashion has been received in equal measure as a non-partisan effort, as was evidenced by the speeches we heard here today and earlier. I will mention particularly the member for South Shore—St. Margaret's, himself a parliamentary secretary and part of cabinet as a result, who spoke so passionately about why we need to act on Lyme disease, and equally so the members today for Oakville, Toronto—Danforth, Saint-Bruno—Saint-Hubert, and Nanaimo—Cowichan. I was particularly struck by the member for Mount Royal. For him the experience of Lyme disease is very personal, because his daughter was exposed to it and suffered from it.

I am probably most grateful, more than to any other individual, to someone who has not spoken to the bill. That is the hon. Minister of Health. Without her support it would be much harder to imagine that we would see the bill leave this place and go quickly to the health committee, where I hope we will have constructive amendments, which I have already discussed with the Minister of Health, to avoid any interjurisdictional problems with the provinces.

I hope to see the bill passed in the House of Commons and go directly to the Senate. Right now I think it is not a question of if the bill is passed, but when, and how quickly we can get help to the people who are suffering from Lyme disease.

My thanks go also to the College of Physicians and Surgeons of Ontario and to the Canadian Medical Association for their quite clear stand in support of the bill to bring the support and the help people need at the level of prevention through greater public awareness, adequate treatment, quick diagnosis, and further research.

To have all these things happen through the sharing of best practices, we need all the players around the table: provincial, federal, and medical experts, as well as the people in the Lyme disease community themselves, who have rallied around the bill, collected thousands and thousands of names on petitions, and delivered them to their MPs.

My thanks go out to all. Let us see the bill passed, and quickly.

[The Acting Speaker, Conservative, Bruce Stanton]

The question is on the motion.

Is it the pleasure of the House to adopt the motion?

[Some hon. members]

Agreed.

[The Acting Speaker, Conservative, Bruce Stanton]

I declare the motion carried.

Accordingly, the bill stands referred to the Standing Committee on Health.

(Motion agreed to, bill read the second time and referred to a committee)