National Lyme Disease Strategy Act

An Act respecting a National Lyme Disease Strategy

This bill was last introduced in the 41st Parliament, 2nd Session, which ended in August 2015.

This bill was previously introduced in the 41st Parliament, 1st Session.

Sponsor

Elizabeth May  Green

Introduced as a private member’s bill.

Status

This bill has received Royal Assent and is now law.

Summary

This is from the published bill. The Library of Parliament often publishes better independent summaries.

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.

Elsewhere

All sorts of information on this bill is available at LEGISinfo, an excellent resource from the Library of Parliament. You can also read the full text of the bill.

May 29th, 2014 / 9:50 a.m.
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Jim Wilson President, CanLyme

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.

May 29th, 2014 / 9:30 a.m.
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Green

Elizabeth May Green Saanich—Gulf Islands, BC

Thank you so much for the question.

When you talk about the cost, not only is it the cost of treating Lyme disease, whether it's a 10-day course or a nine-month course, but add up the costs of misdiagnosis, of putting people on treatments for diseases they don't have. You're not only setting back the health of the patient who is misdiagnosed, but that's also a very significant cost to our health care system, which is why the economic costs of Lyme disease form part of the surveillance program that Bill C-442 would put in place.

I've been very gratified—and I thank you for the question, Terence—by the fact that the Canadian Medical Association is absolutely in support of the bill. The letter will be shared so you'll all have it in detail. They support the implementation of a national strategy or federal framework because they believe that we need “to address the breadth of public health and medical issues surrounding the spread of Lyme disease in Canada”. They regard it as a new infectious disease threat. They're looking at in a very holistic way, looking at the various ways in which the bill will help patients.

The College of Family Physicians of Canada likewise wants to make sure that their representative on the Public Health Agency steering committee will help develop practice guidelines on Lyme disease. This is the medical community itself saying, “It's hard to diagnose. We need practice guidelines. We want to work with you. We want to make this happen.”

As I said, there's been a barrier around it, and I think there's a substantial attitudinal change happening. People used to say, “There isn't Lyme disease in Canada”, or “There isn't Lyme disease in my province”, or “We don't get Lyme disease on Vancouver Island.” These are all things that patients have told me they've heard. Now there's such clear evidence that it's spreading and we do have this illness in all parts of southern Canada that I've heard of.

So the medical community is supportive. I know the Medical Association of Canada would have provided a witness to the hearings on Bill C-442, but just due to timing they're not able to be here in person. But they do plan to submit a brief, and I'm grateful for the chance to mention that.

May 29th, 2014 / 9:10 a.m.
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Green

Elizabeth May Green Saanich—Gulf Islands, BC

Thank you. It wasn't until you drew my attention to what you had seen in Europe, the expansion of tick populations and Lyme disease there, that I started looking into what is happening in Europe.

My bill does touch on this; Bill C-442 deals in paragraph 3(b) with guidelines that also touch on prevention. Of course, that is not quite the same thing as.... A portion of prevention could be the studies that you suggest, to understand exactly why it is spreading. The current prevalent theory is that because of changing temperatures caused by the changing climate, the tick population is spreading.

But we're also seeing other evidence. There was a story in the Times Colonist, the newspaper that covers part of my riding, from Victoria, that there was a raptor discovered—a dead hawk—that had a number of ticks around his eyes. When they analyzed those ticks, they found that some were not deer ticks, but they were also carrying the bacteria that carries Lyme disease. This is hypothetical, so please don't take it as evidence, but there certainly is anecdotal evidence that the bacteria is spreading from deer ticks to other kinds of ticks.

So it may be on the move in other ways that scientists have not yet quite understood. We know that it's more prevalent and we know that it is spreading, and not just where it started, around Lyme, Connecticut—that's why it is called Lyme disease—but into other jurisdictions, obviously including Canada, but also Europe.

Of course, that is the challenge for the medical community. When many of our doctors went to medical school, this wasn't something that was presenting itself as a serious cause of illness.

May 29th, 2014 / 8:50 a.m.
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Green

Elizabeth May Green Saanich—Gulf Islands, BC

Thank you, Mr. Chair.

It is a great honour for me to appear before you as a witness on Bill C-442, An Act respecting a National Lyme Disease Strategy.

This bill was conceived in a non-partisan perspective in order to help people everywhere in the country. I hope that in an equally non-partisan spirit, we will be able to create the strategy set out in the bill.

The bill would introduce a collaboration framework involving the federal, provincial and territorial ministers, as well as representatives from the medical community and patients' groups, in order to expedite diagnosis and treatment of the disease.

I think all members are now quite familiar with the fact that Lyme disease is spreading, particularly across southern Canada.

As I just mentioned in French, I have to say that this is a very non-partisan effort. I am enormously grateful to all members and all parties represented in the House for support for this bill. At the top of my list is thanks to the Minister of Health, Rona Ambrose. I know her officials will be coming in the second part of the health committee's review of the bill.

Let me just explain what it is I hope my bill will do, and then I'll talk about some of the supporters we have for this effort. The support, both politically and from the expert medical community, is quite substantial. Of course, Lyme disease patients from coast to coast have been extraordinary in their support and in reaching out with petitions, which I think many of you have tabled in the House on behalf of your constituents, in support of the bill.

As any of you will know, as members, when you set out to write a private member's bill you're very aware of the constraints: it has to fall squarely within federal jurisdiction and it should not attach itself to any measures that involve spending money.

That said, I know that the Minister of Health would like to have some amendments made. I want to get that out right away. From my point of view, the amendments that the minister or the health department officials will bring to you, certainly the ones I've been consulted about, are absolutely fine.

I tried very hard; I called this the national Lyme disease strategy. It may work better in terms of avoiding any treading on provincial jurisdictions to call it a federal framework or something like that. I'm not prescriptive about what the minister brings forward, obviously. But we do want to make sure that it doesn't tread on provincial jurisdiction. That was my intention in drafting. To any extent that I failed to do that, I want to make sure that the bill is a purely federal effort that engages the other jurisdictions in a collaboration.

So that's the first thing to set out: the effort is to make sure that the federal Minister of Health takes the lead, but the engagement is truly across provincial boundaries in a way that's respectful of jurisdictional limits.

In that vein, I'll let you know that I was amazed to discover that just recently a bill has been tabled in the province in Nova Scotia that will mirror this one. So I think that might be the beginning of what we'll see across the country as more provincial jurisdictions are aware of the spread of Lyme within their own area.

I give credit to Health Canada that since 2009 Lyme disease has been a reportable illness. That's quite a lot of progress, because there was a time, a decade or so before that, when you would be hard pressed to find a jurisdiction that thought Lyme disease was a serious problem. There are horror stories.

The first person I knew with Lyme disease was a neighbour in Nova Scotia, Brenda Sterling. She's very prominent in the movement, so I don't mind mentioning her name. But when she first contracted Lyme, she kept trying to talk to provincial authorities in Nova Scotia. They told her they didn't have Lyme disease in Nova Scotia, so therefore she couldn't have it.

Imagine the change that's occurred. As I said, there's a bill before the Nova Scotia legislature that mirrors this bill.

So what will this bill do? Under this bill, the minister will be required to convene a conference. Now, my bill says within six months. The timing around that might change in terms of government amendments. I don't think that's material as long as it's clear that it must happen. The minister will convene a conference of his or her provincial and territorial colleagues in the departments of health, as well as representatives of the medical community, as well as representatives of patients' groups, and that group will work together to develop a strategy.

There are several key elements of what's missing for the best possible approach in Canada to this illness.

One is that we lag behind the U.S. in terms of awareness for prevention—i.e., when people go out on a hike. I was talking yesterday to the cameraman from CBC who interviewed me on this. He's a volunteer Scout leader. He said it's his second job, and he loves it. He takes the kids out in the woods. They have really ramped up their own awareness for tick awareness, such as checking each other for ticks.

We want people to enjoy the outdoors. We don't want people to get phobic about going on hikes and being outdoors. But we need the awareness to tell them to tuck their pant legs into their socks, to check afterwards, to have a friend check to see if they picked up a tick, and then to know what to do if they have. Awareness and prevention are key.

The next piece, which is much more complicated, is the diagnostic piece. In the letter of support from the Canadian Medical Association, which will be tabled with you in both official languages at your next hour's hearing—I've checked that with the clerk and that appears to be fine to do—the president of the Canadian Medical Association, Louis Hugo Francescutti, had this to say:

Diagnosis of Lyme disease can be difficult because signs and symptoms can be non-specific and found in other conditions. If Lyme disease is not recognized during the early stages, patients may suffer seriously debilitating disease that may be more difficult to treat.

We should find ways to share best practices across jurisdictional lines between members of the medical community so there is a shared understanding of best practices for diagnosis because, as the Canadian Medical Association has noted, with quick diagnosis, treatment is excellent. It's usually a course or round of antibiotics, and patients return to full health. On the other hand, as with my friend Brenda Sterling in Nova Scotia, left untreated, it's debilitating. When I met her she was already in a wheelchair, and I was shocked at the time to discover that she was in a wheelchair due to Lyme disease.

The next piece, of course, is better treatment and management, and that again can be done through sharing of best practices within members of the medical community and finding a recommended national approach that will reflect best practices for treatment of Lyme disease.

All of the materials that can be shared are described in the bill so that there's a public health aspect of this to increase the awareness to help the medical community with the treatment and management of this disease.

The bill goes on to describe the ways in which the Minister of Health will, in an ongoing fashion, share information and help the medical community and provincial and territorial colleagues to work together so that the spread of Lyme disease does not represent a significant threat of permanently debilitating illness to Canadians when it's easily treatable if properly diagnosed. Also there are ways to avoid contracting the illness by being aware of ticks and tick bites.

This is pretty straightforward. I just want to stress one thing about the illness. We know it is under-reported in Canada. How would we know this? In the United States last summer in 2013, the Centers for Disease Control and Prevention in Atlanta, Georgia, based on their understanding of the disease in the United States, increased their estimate of the prevalence of the disease tenfold from 30,000 understood cases to probably in the range of 300,000.

We can assume the same is likely the case for Canada. Since tabling my bill I've had literally hundreds of Canadians write to my office with personal stories. I've also had health professionals, both nurses and doctors, contact my office and say, “I know that in my own province of X, we have only x number of reported cases, but we think it's far higher.”

We are actually acting in a timely fashion. The Parliament of Canada is doing something really useful and helpful, and the Minister of Health in the lead can make a real difference in the lives of Canadians, those who are already suffering with Lyme, and those who can avoid suffering with the steps that can be taken through a federal framework.

I have one very last comment, Mr. Chair. This is not a case where parliamentarians should become doctors, or think we're doctors, or have the politics of the issue have any impact whatsoever on what the medical community decides around the issue. I think that's really important. In some cases in the U.S., there have been some areas where the medical community has felt that politicians went too far. I'm very grateful, again, that in Canada the established medical community and organizations are very supportive of this bill. We're not doctors. We're here to work on public policy.

With that, I open the floor to any questions anyone may have.

May 29th, 2014 / 8:50 a.m.
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Conservative

The Chair Conservative Ben Lobb

Good morning, ladies and gentlemen.

This is our first meeting on Bill C-442, and we have Ms. May here, who is ready to present. The first hour of the meeting will be allocated to her and her comments, and to questions and answers. In the second hour, we will have some additional guests.

Ms. May, you have 10 minutes or thereabouts. If you need longer, you have a bit more time.

Lyme DiseasePetitionsRoutine Proceedings

May 28th, 2014 / 4:15 p.m.
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Green

Bruce Hyer Green Thunder Bay—Superior North, ON

Mr. Speaker, I have a petition regarding Bill C-442, the national Lyme disease strategy act, brought by the member for Saanich—Gulf Islands, which would develop a national strategy to ensure the recognition, timely diagnosis, and effective treatment of Lyme disease in Canada. We have a large and growing number of citizens in Thunder Bay—Superior North who have Lyme disease, and unfortunately, it is increasing with climate change.

Lyme DiseasePetitionsRoutine Proceedings

May 27th, 2014 / 10:15 a.m.
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Green

Elizabeth May Green Saanich—Gulf Islands, BC

Mr. Speaker, the second petition comes from residents of Brampton, Kingston, and Caledon. I am grateful for their support for the private member's bill that will be going to the health committee this week, Bill C-442, my private member's bill on a national Lyme disease strategy. I am very grateful to all members of the House for their support and for this petition.

Lyme DiseasePetitionsRoutine Proceedings

April 30th, 2014 / 3:20 p.m.
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Conservative

Patrick Brown Conservative Barrie, ON

Mr. Speaker, I rise to present two petitions on Bill C-442, the national Lyme disease strategy.

National Lyme Disease Strategy ActPrivate Members' Business

April 29th, 2014 / 5:55 p.m.
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NDP

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.

National Lyme Disease Strategy ActPrivate Members' Business

April 29th, 2014 / 5:45 p.m.
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Liberal

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.

National Lyme Disease Strategy ActPrivate Members' Business

April 29th, 2014 / 5:35 p.m.
See context

NDP

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.

National Lyme Disease Strategy ActPrivate Members' Business

April 29th, 2014 / 5:25 p.m.
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Conservative

Terence Young Conservative Oakville, ON

Mr. Speaker, I rise today to offer my thoughts on Bill C-442. The subject is a national Lyme disease strategy.

I am very pleased to second the adoption of this bill by Parliament to address the urgent needs of victims of this disease. I congratulate the member for Saanich—Gulf Islands for this initiative. I totally support the important principle of this bill and our government's efforts to amend the legislation at the health committee, of which I am a member.

As my colleagues on both sides of the House have recognized, Lyme disease is an emerging infectious disease in Canada. It is caused by a bacterium transmitted by ticks, now increasingly found in southern Canada, including in the greater Toronto area.

Like the member for Saanich—Gulf Islands, I have a friend who suffers from Lyme disease. In 2006, I received a call from my long-time friend, Janet Mitchell, a former Oakville town councillor, who had recently, after years of confusion and misdiagnosis, been diagnosed with Lyme disease.

Janet told me a hair-raising story. She had in previous years lost the feeling in and control of her lower extremities and had difficulty walking. She was naturally deeply engaged with and worried about what was happening. She had great trouble getting up and down steps and ended up using a walker to get around. She and her husband had to move to a condominium that had no steps. She had a fear that she would end up needing a wheelchair due to a disease that she had previously never even heard of.

Then Janet told me that she had heard that her condition could have come from the bite of an insect, which is very frightening. A deer tick had bitten Janet, and unlike most victims of such bites, she did not develop a visible target-like rash, so she had never noticed. This is not that rare. That tick had deposited a kind of poison in her bloodstream, bacteria that over time can hide in the human body and cause those symptoms. It finds places in our joints and elsewhere where antibiotics cannot easily reach. It is like a scary movie.

Reported Lyme disease cases in Canada increased from 30 in 2003 to over 300 in 2012, and these numbers are expected to rise even further as ticks responsible for Lyme disease move into Canada's most densely populated areas. These numbers will also rise as conditions thought to be something else or diagnosed to be something else are increasingly correctly diagnosed as Lyme disease. Indeed, based on current rates in the U.S., Canada is likely to experience a marked increase in Lyme disease cases in the coming 10 years. Some estimates report that by 2020, the economic cost of reported Lyme disease cases in Canada could reach $8 million annually, for cases diagnosed early, in medical costs alone.

Being from Oakville, in southern Ontario, I understand that it is my part of the country that will most likely see the sharpest spike in Lyme disease cases over the next decade. That is why it is so important to my constituents that we address this issue sooner rather than later, and it is why I thank Janet Mitchell for educating me about this nasty and insidious disease.

These unsettling statistics are some of the chief reasons I am supportive of this legislation before the House today and why I have also been pleased to hear of our government's work in addressing Lyme disease. In recent years, our government has committed to working with the provinces and territories to address these risks to Canadians. The Public Health Agency of Canada has undertaken enhanced stakeholder engagement, public and clinical education, enhanced surveillance, and research to improve diagnostic integrity, which is one of the key problems.

The Public Health Agency's work has focused on surveillance, prevention, and control as the first step. The second step is research and diagnosis, and the third step is engagement, education, and awareness. This work has demonstrated positive first steps to address an emerging yet serious disease, and Bill C-442 promises to further add to this drive. Additionally, our government has devoted funding dollars in support of Lyme disease research, primarily through the Canadian Institutes of Health Research. Indeed, since 2006, we have invested approximately $4.6 million in Lyme disease research.

Our government has also been diligently working in concert with the provinces and territories on surveillance and on prevention and control activities. Provinces and territories report Lyme disease as a national reportable disease, and these data are contributing to the Public Health Agency of Canada's ability to monitor and report on the disease's progress.

Of course, the reality is why I am supportive of our government's proposed amendments to the bill, as outlined in the above facts.

Janet Mitchell was originally told by her doctor that she had MS, a disease that is somewhat more common in Canada than in other countries. She was told, like many others across Canada, that she could not possibly have Lyme disease, because we do not have Lyme disease in Canada. That was the best diagnosis she could get at the time. I shudder to think of how frightening that false diagnosis would have been for her and other Canadians who may have been diagnosed in a similar way.

However, Janet studied her condition on her own. She had spent a lot of time camping and hiking. Absent a visible rash, she had all the described symptoms of Lyme disease she found on the Internet. Janet found a new doctor, who advised her that the only test done in Ontario was not that reliable. She paid to have her own blood sample sent to the U.S. for a test called IGeneX, otherwise referred to as Western Blot, which is far more reliable. That test told her that she had the Lyme spirochete in her bloodstream. She had Lyme disease.

The theory that we do not have Lyme disease in Canada was actually never really true. We just did not have very much of it. Yet our specialists misdiagnosed many Canadians with Lyme disease as having other conditions, preventing them from getting the treatment they needed, as if deer and birds do not cross international borders, because both carry the ticks.

If caught early, Lyme disease can be cured. The bacteria can be eliminated with common antibiotics like erythromycin. However, once the spirochetes invade the cells, it is difficult to kill them, requiring, in some cases, months of treatment with more powerful antibiotics. An early and accurate diagnosis is key.

It is clearly important to respond to emerging diseases such as Lyme, but as the federal government, we still maintain the responsibility to respect jurisdictional boundaries, especially with regard to health care.

I have been very pleased to see that our government has been delivering historic funding dollars in support of health care to be delivered by the provinces and territories. They are projected to reach $40 billion annually by the end of the decade, which is, of course, a new record.

Provinces and territories are responsible for health care delivery, and it is important that the bill reflect that reality. At the federal level, we do our part by supporting research and sharing best practices across jurisdictions. Indeed, we are the single largest investor in health research, with support of nearly $1 billion annually. These research dollars will deliver the resources necessary to support medical experts in developing the research necessary to adequately respond to new and emerging diseases.

As I mentioned earlier, I am a member of the Standing Committee on Health and very much look forward to further review of Bill C-442 when it is referred to us in the coming months.

In the course of the committee's work, I hope to hear from various stakeholder groups on the current and possible future impacts of Lyme disease, not the least of which will be medical experts on the subject. Their input will help contribute to the committee's understanding of this emerging disease and further inform our work going forward.

I would be pleased to work with the member for Saanich—Gulf Islands on the bill, which promises to further build upon the good work our government has been doing to address Lyme disease in Canada. I think her commitment to this evolving issue and her willingness to work with our government demonstrates a spirit of co-operation that will be important going forward.

As we look to proceed on the bill at its current stage, I anticipate a good and full discussion on its merits and on ways it can be further improved.

I thank my hon. colleagues from all parties for their attention, and I urge them to support Bill C-442 at this stage so that we may work to improve its recognition of jurisdictional responsibilities and the proper role the federal government plays in addressing emerging diseases.

I look forward to the health committee's proceedings on the bill and the testimony we will hear on the subject of Lyme disease.

National Lyme Disease Strategy ActPrivate Members' Business

April 29th, 2014 / 5:15 p.m.
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NDP

Craig Scott NDP Toronto—Danforth, ON

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.

Alison says:

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.

The House resumed from March 3 consideration of the motion that Bill C-442, An Act respecting a National Lyme Disease Strategy, be read the second time and referred to a committee.

Lyme DiseasePetitionsRoutine Proceedings

April 29th, 2014 / 10:05 a.m.
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Green

Elizabeth May Green Saanich—Gulf Islands, BC

Mr. Speaker, I rise today to present two petitions.

The first is relevant to business that we will take up later this afternoon in private members' business. My bill, Bill C-442, calling for a national Lyme disease strategy, is up for the second hour of its second reading. Citizens from Etobicoke, St. Marys, and other locations in Ontario have petitioned this House to support the bill. I hope that will be the case.