Past Session:

Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology

Issue 24 - Evidence - December 10, 2014

OTTAWA, Wednesday, December 10, 2014

The Standing Senate Committee on Social Affairs, Science and Technology met this day at 4:13 p.m. to study Bill C-442, An Act respecting a Federal Framework on Lyme Disease.

Senator Kelvin Kenneth Ogilvie (Chair) in the chair.

[Translation]

The Chair: I would like to welcome you to the Standing Senate Committee on Social Affairs, Science and Technology.

[English]

I'm Kelvin Ogilvie from Nova Scotia. I will ask my colleagues to introduce themselves.

Senator Eggleton: Art Eggleton, senator from Toronto and deputy chair of the committee.

[Translation]

Senator Chaput: Maria Chaput from Manitoba.

[English]

Senator Enverga: Tobias Enverga, Ontario.

Senator Stewart Olsen: Carolyn Stewart Olsen, New Brunswick.

Senator Seidman: Judith Seidman from Montreal, Quebec.

The Chair: Thank you, colleagues. We are continuing to deal with Bill C-442, An Act respecting a Federal Framework on Lyme Disease, and we have two groups with us today. From the Canadian Institutes of Health Research we have Dr. Marc Ouellette, Scientific Director, Institute of Infection and Immunity, Canadian Institutes of Health Research. He's here with us via video conference.

From the Public Health Agency of Canada we have Steven Sternthal, Director General, Centre for Food-borne, Environmental and Zoonotic Infectious Diseases; and Robbin Lindsay, Head, Field Studies, Zoonotic Diseases and Special Pathogens Division, National Microbiology Laboratory.

Colleagues, I want to remind you that this session of the committee will end no later than 5:15 p.m., and we will immediately go into clause-by-clause following the conclusion of that session. Because of the issues of technology, the weather, et cetera, I will ask Dr. Ouellette to present first so we have his testimony on the record and then let the elements take care of themselves. With that, Dr. Ouellette, we ask you to make your presentation.

Dr. Marc Ouellette, Scientific Director, Institute of Infection and Immunity, Canadian Institutes of Health Research: Thank you, Mr. Chair, and honourable senators. I would like to thank the committee for inviting me to speak to you on how the Government of Canada is supporting Lyme disease-related research across the country.

As you know the Canadian Institutes of Health Research, CIHR, is the Government of Canada's health research funding agency with a mandate to support the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products, and a strengthened Canadian health care system. Within CIHR, the Institute of Infection and Immunity, for which I am the scientific director, supports research and helps to build capacity in the areas of infectious disease and the body's immune system.

Since its inception in 2000, CIHR has invested more than $7 million in Lyme disease research. This includes an investment of more than $500,000 in 2013-14 alone.

These investments have supported research examining the dissemination and replication of the bacteria Borrelia burgdorferi, which is known to be the causative agent of Lyme disease. CIHR's investments have also allowed researchers to examine protective practices against tick bites and tick-borne diseases.

[Translation]

For example, CIHR is currently supporting the work of Dr. George Chaconas, a Canada Research Chair in the molecular biology of Lyme borreliosis at the University of Calgary, who is investigating how the genetic information in the bacteria which causes Lyme disease is passed on from generation to generation.

Part of Dr. Chaconas' research focuses on identifying interactions between the bacteria and the human immune system. This research will help provide a better understanding of the complex processes of this disease-causing organism, and may well lead to the development of drugs to either block or treat infection associated with Lyme disease.

[English]

Over the past decade, Dr. Chaconas' research has been recognized internationally. His CIHR-funded research has resulted in the publication of over 30 peer-reviewed scientific articles and has allowed him to collaborate with the best Lyme disease researchers in the United States. In 2011, Dr. Chaconas received the Canadian Society of Microbiologists' Murray Award for Career Achievement for his research in the area of Lyme disease.

CIHR is also supporting the work of Dr. Tara Moriarty from the University of Toronto. Dr. Moriarty developed a new microscopic technique for studying the dissemination mechanisms of Borrelia burgdorferi in real time. This technique facilitates the work she's currently conducting with engineers at the University of Toronto to design novel devices to screen inhibitors of Lyme disease bacteria in the bloodstream. This will help further our knowledge on the vascular dissemination of the bacteria — a key step to better understand the progression of Lyme disease in humans.

[Translation]

In 2011, Dr. Moriarty received the Bhagirath Singh Early Career Award in Infection and Immunity, which facilitated the expansion of her research program into new areas related to susceptibility to Lyme disease infection and dissemination.

[English]

As you can see, research conducted in Canada has significantly contributed to global knowledge surrounding the bacteria responsible for Lyme disease. Thanks to researchers' efforts, we have a better understanding of how this bacteria replicates, how it spreads in the bloodstream, how it evades destruction by the immune system, and how the bacteria is regulated.

Advances in imaging technology now allow the visualization of the Lyme disease bacterium in the living host. Understanding how this organism survives, functions and causes disease will help us develop innovative treatments for those who suffer from Lyme disease.

CIHR is dedicated to continue supporting research related to Lyme disease through various programs, including the CIHR open suite of programs.

In conclusion, Mr. Chair, let me assure you that CIHR will continue building Lyme disease research capacity in the country and promoting international research collaboration to address the impact of Lyme disease on the health of Canadians and the global population and ultimately to find a cure to this disease.

We're also committed to pursue our long-lasting and productive collaboration with the Public Health Agency of Canada.

Thank you for your attention.

[Translation]

Steven Sternthal, Director General, Centre for Food-borne, Environmental and Zoonotic Infectious Diseases, Public Health Agency of Canada: Thank you for the opportunity to contribute to your deliberations on Bill C-442.

[English]

The Public Health Agency of Canada aims to promote better overall health of Canadians by preventing and controlling infectious diseases. We undertake primary public health functions through health promotion, surveillance and risk assessment. These inform evidence-based approaches to prevent and control the spread of disease.

As you have heard from other witnesses, Lyme disease is one of the most rapidly emerging infectious diseases in North America. The spread of Lyme is driven in part by climate change as the tick vector spreads northwards from endemic areas south of the border in the United States.

Based on the lessons learned in the United States, we anticipate the disease will affect over 10,000 Canadians per year by the 2020s. Those are our projections. To date, we have seen cases increase from, in 2009, a case count of 128 to approximately 680 in 2013, a fivefold increase in just over five years, so we are seeing the trends go up. However, the agency has estimated that the true numbers of infection are likely about three times higher than what is reported, so three times higher than the 680 figure.

[Translation]

Following a thorough review of Canadian surveillance data, available research, stakeholder views and existing public health messaging, the agency has put in place an action plan on Lyme disease to prevent and control Lyme disease in Canada.

The action plan identifies three pillars for concrete action: engagement, education and awareness; surveillance, prevention and control; and research and diagnosis.

[English]

The first pillar includes a comprehensive public awareness plan that focuses on educating both the general public and health care professionals that Lyme is here in Canada. Raising awareness amongst health professionals is one of our key goals: educating them on the symptoms and encouraging them to properly diagnose and report cases to local public health and to the Public Health Agency in Ottawa. We have already reached roughly 200,000 health care professionals with awareness posters over the past year, posters published in medical journals and through other professional fora. The agency has also worked with provincial and territorial public health authorities to develop a coordinated communications strategy and various public awareness tools focusing on Lyme disease.

[Translation]

I would now like to address the second pillar, which focuses on innovative ways to conduct surveillance and encourage preventive behaviour.

[English]

Efforts made in Lyme disease surveillance are starting to show results. This year, the majority of provinces across Canada are providing detailed case data which will help to identify new areas where Lyme disease is endemic and assist provinces in tailoring their own preventive strategies as well.

[Translation]

Our final pillar focuses on increasing lab capacity, testing new diagnostic methods, and research to generate new insights into effective diagnosis and treatment.

[English]

Under this pillar, the agency is increasing testing capacity and quality by using and applying state-of-the-art laboratory equipment. We recognize the challenges with current testing, particularly around detecting early Lyme disease, as you have heard from other witnesses, and are committed to improving diagnostic testing. New methods are being evaluated, and any that outperform current methods will be adopted.

The agency's National Microbiology Laboratory, in collaboration with the Canadian Public Health Laboratory Network and other stakeholders, will be updating our laboratory diagnostic guidelines. I am pleased today to have my colleague here from the National Microbiology Laboratory from Winnipeg to answer any of your questions.

However, in doing so, the agency faces a challenge. We can update the guidelines to reflect current evidence, but new evidence is needed to inform new diagnostic and treatment methods. The agency is working with medical professionals and their various national associations; patients; advocacy groups, such as the Canadian Lyme Disease Foundation; and, of course, our colleagues, Dr. Ouellette and the Canadian Institutes of Health Research to identify and to try and address these research gaps.

[Translation]

In closing, I would like to restate that the goal of the agency is to mitigate the impact of Lyme disease on Canadians. Through our collective efforts, Canadians will be more aware of the disease to recognize its symptoms and benefit from early treatment. Together, we can reduce the severity of Lyme disease in Canada.

[English]

Senator Eggleton: Thank you for your presentations.

The preamble to Bill C-442 states:

Whereas the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness;

Can you comment on that?

Mr. Sternthal: The agency doesn't have a position on the sections of the preamble. We certainly view the bill overall as building on the action plan that the agency has put in place over the last three years, and we believe the framework that is proposed in the act will help us continue the dialogue and discussions.

We are certainly aware of and are in discussions with many of the witnesses you had here before your committee and with other professional and patient advocacy organizations, and there really is a challenge. Certainly, we recognize that we believe more evidence is needed, and we are trying to work on that, as I said in my remarks; but the reality is the discussions we hope that will come from the framework, the conference that the minister will hold, the dialogue and discussions will help us bridge that gap and get closer together in that regard.

Senator Eggleton: Okay. Well, how does the action plan that you're putting in place then dovetail with what this bill is about? Are you going to hold off on the action plan until you get this meeting and these processes in place that the minister is being asked to carry out in the bill?

Mr. Sternthal: So the action plan that's been under way for the last 18 months to 24 months. We've already been working on raising public awareness, improving surveillance and collaborating with the stakeholders to look at how we can improve the research on diagnostics. Those elements in the action plan are very much aligned with the spirit and also some of the specific requirements outlined in the act.

Senator Eggleton: Let me ask Dr. Ouellette this. You've mentioned the development of reliable diagnostic testing. There's also the need to educate physicians on these issues. We've certainly heard that from our witnesses here.

The research you talked about, Dr. Ouellette, is it working on the diagnostic testing aspect of things, and do you or either of your agencies propose to do something with respect to the education of physicians?

Dr. Ouellette: Thank you for your question. The short answer is the research that I have described is not about the diagnostics. It's more about treatment. It's about finding new molecules that will be able to treat Borrelia or also to understand how the bacteria is causing the disease. This is mostly the research that has been funded so far through CIHR.

But we do recognize the importance of education, so there can also be interesting research questions about how to better educate and the best strategy to move forward. This is part of the action plan that Steven Sternthal was talking about. We are in communication with PHAC to try to move in those directions.

Mr. Sternthal: One of the efforts we're undertaking in the next few months is what CIHR calls a ''best brains exchange.'' We're bringing together a group of scientists across Canada, with some international participation, particularly focused on the issue of diagnostics and what diagnostic-specific research can we advance.

We have been working with very much with the CanLyme foundation, CIHR and the medical professional organizations to bring the right experts together, and we're planning to have that session in the month of April. If all goes well, again, it will point us in the direction of which questions will be helpful to advancing the diagnostics.

Maybe my colleagues from NML could also comment, given that they're at the front lines of laboratory testing in Canada.

Robbin Lindsay, Head, Field Studies, Zoonotic Diseases and Special Pathogens Division, National Microbiology Laboratory, Public Health Agency of Canada: We've been working through this Canadian public health lab network to try to update the guidelines that are currently in place for the diagnosis of Lyme disease. We're working with the lab directors from across Canada who do the diagnostic testing, trying to help to standardize and to improve the communications about standard protocols, and we are also looking at updating those guidelines.

As a function of that, as well, we are also evaluating new diagnostic tests as they become available. One just got licensed here in Canada within the last year and we're doing a collaborative study between the national microbiology lab and the QE2 in Halifax looking at the performance characteristics of that particular assay. It's quite an exciting one because the diagnostics with Lyme disease are most challenging when people have acute disease or very early on. This particular assay has a couple of markers that are specifically expressed very early on in the disease, and these are unique proteins, or antigens or peptides, that are being expressed, so we're trying to work with that group. Those are the bench level people; those are the laboratorians.

We're evaluating assays, standardizing and evaluating them as they become available, and we're also looking at improving the quality of the samples we do. We're looking at proficiency, expanding our proficiency panel, so we're doing an overall better quality job of diagnostic testing. It's all part parcel of the same package.

Senator Seidman: Thank you very much for your presentations. We all understand that surveillance is directly connected to prevention and control and, Mr. Sternthal, you made that connection in your presentation.

I would like to ask you about PHAC's current surveillance system. Your website says that you're currently surveilling in two forms: first, human cases of Lyme disease; and, second, ticks that carry the bacteria. Could you tell us, please, what the current system is and how the bill will dovetail with that or improve the system?

Mr. Sternthal: I can start, and my colleague can assist me.

One of the things we've been able to do in the last 12 to 18 months is work with provincial officials to broaden the types of information that they're collecting from physicians who are diagnosing the cases. It is the kind of information about signs and symptoms, what the presentation of patients are in the doctors' offices, what it looks like, so we can try to better inform the diagnosis.

For the training, we're working with the College of Family Physicians so that the cases of Lyme disease can be more clearly identified in the differential diagnoses of physicians.

We now have most of the provinces who have signed up, so to speak, collecting that information from the local physicians, and we're now in a position with our over 600 cases to look at trends, patterns and typical and atypical presentations of cases in the country.

Of course, as numbers increase, we'll have an even greater depth of the data with which to do our analysis.

Mr. Lindsay: The tick surveillance is unique to Canada. We have been running this passive tick surveillance since 1990. It started in Quebec, and we've been trying to use those as an indicator of risk, because the risk for these ticks is where the populations are established. We, of course, have air-borne specimens that come up and carry there, and they represent a low risk, but the greatest risk to Canadians is where the populations is established.

We have been trying to document those and observe the changes, so that we can educate the people in those areas with our provincial collaborators to make sure that we know where the populations are establishing, so the messages about personal prevention can get out and doctors in those areas know that the ticks are established there and they might expect to see human cases.

That program has evolved over time, and now we're looking at documenting populations more actively. Our passive surveillance program really involves submission of ticks from a wide variety of subscribers, but now we're more actively going in the field with our provincial collaborators and looking specifically based on habitat for areas where these ticks are starting to establish so we can make predictions about where they're going to go from there.

We've already done some very good modelling exercises and are looking at the effects of climate change on where those populations are going to go. Unfortunately, it only gets worse over time, because these ticks are going to continue to move into suitable habitats. Even in the Ottawa area, they're becoming established where 10 years ago they were not. They are very much progressing.

Ticks give us an early warning. When populations are establishing, the infections are usually low in those ticks and they build up over time. It gives us an opportunity to educate people locally that these ticks are here and to take the precautions and, hopefully, that educational information flows back to the people on the front lines.

As to how it will dovetail with the bill, I suppose we will look collectively at how we're doing surveillance. I think within these discussions we'll get feedback on whether there are different approaches we should be taking, or whether this is an effective way to manage risk or to forecast risk in the future.

[Translation]

Senator Chaput: Thank you, Mr. Chair. My first question is for Dr. Ouellette. In your presentation, you said that the research conducted in Canada has significantly contributed to global knowledge surrounding the bacteria responsible for Lyme disease.

The last paragraph of the preamble of Bill C-442 advocates ''. . . placing the highest priority on the development of reliable diagnostic testing for the disease and on educating physicians so they can recognize the symptoms of Lyme disease and treat patients in a manner that is medically appropriate. . . .''

Are there currently any federal research investments targeting the development of reliable testing techniques for Lyme disease? Has that been done?

Dr. Ouellette: Thank you for your question. I must admit that I have a challenge because when I do not understand the questions in French, they are translated into English, then when I speak in French, they are speaking in English at the same time as me. I will try to answer your question in French.

The research that is currently funded does not focus on diagnosis exactly. I would like to repeat what Steven Sternthal said about the initiative of the CIHR, the Public Health Agency of Canada and CanLyme, known as the ''best brains exchanges,'' that aims to examine the evidence to establish priorities within the health care systems, like diagnosis.

There is also a commitment from various federal, provincial and territorial partners to generate more applied research. Basic research was done to better understand the bacteria but, now, we will see what kind of research can be done in response to those who make the regulations and establish the priorities so that we can better care for patients with Lyme disease.

[English]

Senator Chaput: Has the federal government contributed to this kind of research already?

[Translation]

Dr. Ouellette: Now you are asking me a question in English, and it is translated into French.

With respect to the diagnostic testing, since 2000, when we looked at CIHR statistics, I did not see research that had been funded for diagnostic testing. CIHR is only one of the various partners that fund the research. For example, there is much talk about ticks, so it is a zoonosis and is transmitted between the animals, the insects and the human. Another agency, NSERC, can also fund this type of research. I have not done any research into that. There is the Public Health Agency of Canada, represented by my two colleagues, that also funds diagnostic research, and it is possible that there are activities not specific to CIHR that have been done on this problem.

Senator Chaput: Thank you. My next question is for the Public Health Agency of Canada. Could you please give me some examples of best practices for treating Lyme disease at the acute stage, then at the chronic stage? Do best practices already exist?

Mr. Sternthal: For treatment or prevention?

Senator Chaput: Both.

Mr. Sternthal: For treatment, if Lyme disease is diagnosed, antibiotics are usually given in the short term to treat the disease. In most cases, the symptoms and the disease are cured. However, a certain percentage of people do not respond to short-term antibiotic treatment, and that is one of the cases where we have to follow up with provincial specialists.

As for prevention, our website currently lists precautions you can take when you are involved in outdoor activities, including checking your body after those activities. We are trying to educate the public about behaviours, including taking precautions when they go outside.

Senator Chaput: Is diagnosis very difficult?

Mr. Sternthal: For doctors in the community, it involves examining the patient and considering the symptoms, because we know that lab tests will not help in the first few weeks. However, if people find a tick, they can capture and send it to my colleague in Winnipeg, Dr. Lindsay, to see if it carries the bacteria.

[English]

Senator Merchant: First, if I were suspicious that I might have Lyme disease — and I will follow on from the previous questioner — do the procedures vary from province to province today in Canada?

Second, because the initial tests are not always able to detect the disease, if I were able to afford to go somewhere else, if I were one the lucky people who can go and pay, is there a world-accredited lab to send my blood to and be tested and, once I get the results, could I get treatment here in Canada? Are there doctors who will accept the results of a world-accredited lab?

Mr. Sternthal: I'll start and then ask Dr. Lindsay to comment as well.

Certainly the front line for treating Lyme disease is family physicians in Canada. That's the first place all of us would go if we had a fever or a rash and not quite sure what it would be. That would be the gate-keeping into the health care system.

In most cases, if the physician diagnoses the symptoms and diagnoses your potential exposure to being in an outdoor activity or other area where you might have been exposed to Lyme, then they would simply go ahead and treat and give you the short course of antibiotics. That would be the first reaction that I would do if I was feeling unwell.

For those who went through to their physicians and not having a diagnosis or been misdiagnosed, that's when others will look at other potential medical professionals to go to or holistic practitioners or to look outside of our borders for health services.

We are aware that there are a number of Canadians who have travelled or have sent their blood samples to laboratories in the United States. We are quite aware of that. Dr. Lindsay can comment on how we view those test results, because we are concerned from the perspective of wanting to ensure that patients in Canada receive the best possible health care. We are very much reliant on the physicians to diagnose locally across the country and to refer to infectious diseases specialists to follow up if there are ongoing concerns about a Lyme or a tick infection.

Mr. Lindsay: I think you would see a little difference between the provinces based on their experience. If you were dealing with a physician if you lived in southern Ontario, you may likely run across a family doctor who has seen Lyme disease patients. If you are somewhere in Saskatchewan or Alberta, the odds of a physician being familiar with or likely to have already seen human cases is much lower. In that circumstance, they will do a consult with an infectious disease person right away.

In terms of the diagnostic testing, there really is no major difference between the different jurisdictions. We do use slightly different assays in some instances. Many of us use the same assays. Some of the smaller provinces do not do their own testing; that comes to the national microbiology lab, but in the larger jurisdictions, such as Ontario and British Columbia, who have been grappling with Lyme disease longer, they do the complete suite of testing on their own and everybody in Canada follows the two-tiered algorithm.

If you went south of the border, depending on where you went, you may end up with exactly the same testing as is done here in Canada. If you go to the Mayo Clinic — and many people have heard of that famous medical institution — they do the same two-tiered testing as is done here, in some instances using the same tests.

If you want to go a specialty laboratory which specializes in Lyme disease testing, we don't necessarily recommend that because they in some instances use criteria different from what we use or they use interpretive criteria that are slightly different and we feel that in the vast majority of instances you should be able to get diagnosed and treated here in Canada without having to resort to going to the U.S.

Often people are not convinced that they maybe perhaps lack some confidence in their physician and want a second opinion and certainly can seek that, but the standard they set for the diagnostic testing is not any higher than what is done in the provincial and federal laboratories here, so we don't necessarily recommend that people have to go outside of the country to get treated.

Senator Merchant: There are people who do go out of the country to get treated and they get results that are different from perhaps what they have received here, because it's difficult to detect the Lyme disease in the early stages. So, if people can afford to go, they go.

I also asked, if they were to come back with results that indicate they have the disease, whether they would be able to get treatment here in Canada.

Mr. Sternthal: The treatment decisions are very much in the hands of our physicians across the country. Someone who has gone through multiple physicians and gone to the U.S. for testing more than likely would go to an infectious disease specialist with their results. As I understand, because of the differences in the interpretation of laboratory results, the fallback position is sort of a Canadian standard, which is as well the U.S. international standard. That is why we have acknowledged a primary short-term priority for us is to look at the issue of diagnostics, including laboratory and clinical aspects of diagnosis.

We understand the issue is right now for Canadians who can get a positive test from one lab and a negative result from another lab. Not being a laboratory person, you say that a test is a test. Obviously, there are differences inherent in the tests, and that's why we invest in trying to standardize and make sure we don't have false positives or false negatives and, therefore, have treatment advised and provided to patients that may not be the right course of treatment.

Right now we have that reality and those differences; and we are trying to work through the best brains exchange and other research ways to try to get at the answer to that question.

Senator Cordy: We've heard before from witnesses that there were 680 cases of Lyme in Canada in 2013, but that it may be three times higher. In determining that number, are they 600 cases that were diagnosed in Canada or were any of them diagnosed in the U.S.?

Mr. Sternthal: Our surveillance system is based on information collected by local public health authorities, which comes from Canadian physicians; so they're Canadian diagnosed cases.

Senator Cordy: Anybody diagnosed in the U.S. would not be counted.

Mr. Sternthal: If they were also diagnosed by a physician in Canada, then, yes, they would.

Senator Cordy: It's unlikely they would be as that's why they went to the U.S.

Dr. Lindsay, you said they should be diagnosed and treated here in Canada. The overwhelming number of emails I received from Canadians suggests that, in fact, diagnosis seems to be the major factor in their concern and distress. We've already heard that early intervention is the best, so if they're not diagnosed and it's taking a long time to go from doctor to doctor. The longer they wait, the more challenging it is to treat the disease.

It's good to say they can get to see the specialist, but they have to go through the gatekeepers, the family doctors, to get the specialists. If your family doctor does not raise the concern, you will not get to see that specialist.

Diagnosis, of all of the information that I've received from people with Lyme disease, would be the key worry that they have. I know you're doing work on this now, but how soon will we get diagnostic tests that people are confident in such that they don't feel they have to pay their own money to have tests done in the United States?

Mr. Lindsay: That's a number of years down the road. The test haves evolved. When Lyme disease first became a clinical entity in 1982, most of the tests were a simple ELISA test but it lacked specificity. Over time, in the late 1990s, they standardized the cutoffs for these different tests to recognize which were most informative or less informative. Since that time, there has been a movement away from whole-bacteria-based or whole-organism-based as opposed to the ones that have these special recombinant proteins or peptides so the accuracy of the tests has gone up.

Even over that 20-year period, we are seeing only modest improvements in the diagnosis. The early disease is the most challenging, because people have an immune response. The problem is that there aren't a lot of different antigens or materials within the bacteria that would illicit an immune response present in the early infections. There are not a lot of targets shared among the different bacteria that could narrow it down. It will take a number of years before the new diagnostics. We preach to the physicians that if it's an early infection, the diagnostics have only limited value. You can't lean on them too heavily.

Senator Cordy: When you are talking to the physicians, communication is the most important. I gather you are working with the provinces and territories. One thing we heard is that the doctor will look for the bull's-eye rash, which does not always appear, and at the location to see if it's a tick area or Lyme disease area. However, that range is changing and growing significantly.

We had a witness here last week who got his Lyme disease in Dartmouth, which is where I live. It's a highly populated area. We are hearing about cases coming from Bedford, which is another highly populated area. Are doctors understanding that some of the things they were looking for in the past are not necessarily going to be there in diagnosing someone with Lyme disease if the testing is years away?

The Chair: The question is important, but the bill is what we're really looking at here. Can you relate the uncertainty in this area to the importance or significance of the bill?

Mr. Sternthal: Perhaps part of what is in the bill alludes to some of the best practices both on prevention and treatment for Lyme disease. We acknowledge we don't have all of the evidence or the perfect diagnostic tests available; so outreach to family physicians, which is well under way, is to try to get them, at least in early Lyme disease, first to not focus on whether or not there's a rash, as we do acknowledge that the rash is not there 100 per cent or looks like a perfect bull's-eye, and, second, to treat the whole person and look at the symptoms.

Unfortunately, we know it's easy to misdiagnose and easy to miss because of the kinds of symptoms that show up.

We had a symposium in Toronto where over 90 family physicians stayed behind for a three-hour session on Lyme disease. The interest is growing; but we have a lot more work to do with the colleges, the provincial licensing bodies and the training schools. McMaster is developing an excellence or family-physician-focused-modules on Lyme disease to try to show typical and atypical cases that they might see in doctors' offices. There's an awful lot of interest, and I am seeing some movement. They're all being done in parallel, because we're not waiting for one to do the other. They are all happening at the same time.

Senator Enverga: Gentlemen, I was listening to your presentation: engagement, education, awareness and surveillance, prevention, and so on. My question is: Have you ever thought about, as awareness, the fact that we are looking at the host. What about the ticks? Have we thought about developing some sort of working relationship with national parks or something to put up a picture of a tick and say that you don't have to be bitten by a tick to get the target rash? The mere fact that you saw the tick there might be the clue that Lyme disease was there. Have you thought about this kind of thing?

Mr. Sternthal: One of our target audiences for our recent public awareness education activities was working through Parks Canada to have campers and folks going to the parks receive information on entry into the parks and on exit so they could be aware that if three days after they leave the park they come down with some of the symptoms that we ascribe to Lyme disease, they can take that to their family physician. It is very much on our radar in terms of accessing where folks are going to be most likely exposed to ticks in the country. That's definitely one audience.

Senator Wallace: Mr. Sternthal, you described the action plan on Lyme disease that the Public Health Agency has been developing and working diligently on, and you refer to the three pillars for concrete action. Those pillars seem to be very comprehensive and I'm sure in many ways complete.

When I compare that to what is outlined in the bill, in the development of a comprehensive federal framework, it seems to me that the pillars of your action plan are very much in line with the purposes of that comprehensive framework.

I'm just wondering, what is in this comprehensive framework or the process — the purpose for which this framework would be used — which would start with the convening of a conference with provincial and other stakeholders? What would the bill precipitate that your agency is not already involved in in?

Mr. Sternthal: As you rightly pointed out, our work is focused on what our agency can do, but I appreciate in Ottawa and from Winnipeg, we have limitations on what happens on the front lines across the country and what happens across various federal departments. We have certainly had, with colleagues within CIHR, the health portfolio and Health Canada, a lot of good collaboration that a federal framework would only strengthen. But it focuses on our engagement with provinces and territories and how we can continue to build Lyme disease and other upcoming and emerging infectious diseases into their programming.

At the end of the day, like West Nile virus today, in the early days, it was the Public Health Agency and Health Canada that led initiatives from the federal level. Today there are programs across the country, in local public health, to deal with mosquito control for West Nile virus. As these things are new, we take the leadership at the federal level and they allow us to work with our provincial colleagues and professional associations to try to find the right mix.

In this case, there are some specific issues that we've discussed and raised today in this session that would benefit from a broader discussion and that is that consensus building, the framework and the conference would allow us to make greater headway.

Senator Wallace: Has there ever been a conference on a national basis that would bring together all of the experts on the topic of Lyme disease?

Mr. Sternthal: There have been previous, so-called, national consensus at conferences that have been supported by the federal government and put in place over the years, not just on Lyme disease, but for many other diseases as a way of trying to reach consensus. Not all of these for a do reach consensus. Often they find commonalities, but often have a lot of unanswered questions. The federal framework will allow us to really identify those areas that we believe we can action and move forward, as the federal government, and get the collaboration of our provincial and territorial colleagues.

Senator Stewart Olsen: I have a tonne of questions, but I will stay with the chair and go with what's in the bill.

I take the diagnostics very seriously, and I'm wondering whom you think should be at this conference, so that we can solve some problems like the diagnostics and be comprehensive in our approach, should the bill pass.

Mr. Sternthal: I think from the perspective of what's been called for, it is fairly broad and inclusive. For participation we need: obviously, patient advocacy; folks with laboratory expertise that can come with expertise on Lyme disease and other diagnostic tests; academia because they have a role to play; ultimately, the private sector would be nice, but that is something that we have to assess; and the users of this, who will really be the health care professionals and the health care associations. They have to be in the discussion from the beginning so that we can evolve our comprehensive understanding of what's possible and what we can fix along the way.

Senator Stewart Olsen: Would you include some foreign or outside-of-Canada agencies and bodies? Would you consider that they should be invited as well?

Mr. Sternthal: Yes, we absolutely would.

The Chair: Dr. Ouellette, I'm going to give the last words to you. You've been very patient, and I'm sure you have some thoughts on some of the questions. I'm going to give you an opportunity to add anything that you would like, with regard to what you've heard in the last few questions, before I bring this session to a close.

Dr. Ouellette: Thank you for the opportunity. Yes, I totally concur with what Steven Sternthal has indicated. I think the best brains exchange is key for diagnostics. I think we will invite a broad number of individuals including: the entomologists, because I think it's important that we look at the tick dimension because it's a zoonosis; and, also, some of the treating individuals — the physicians who are involved in treatment.

Again, I think it's a unique opportunity to make a difference. This is an emerging infectious disease. It went from very few cases a decade ago, and now it's climbing. If we look at the modelling that the Public Health Agency of Canada is doing and from some researchers, it's going to grow and we have to respond to this. I know we have to first concentrate on diagnosis, but there are many other aspects that need to be eventually dealt with, with increased excellence in research.

The Chair: Thank you Dr. Ouellette and you made Dr. Lindsay very happy with regard to your reference to entomologists being involved in this.

I think from what we've heard from the questions and your responses that you've summed it up very well, Dr. Ouellette. It's an emerging health issue and we have seen it spread.

By the way, some of us had the privilege to hear from Dr. Moriarty whom you mentioned in your introductory notes and who gave a very good summary of the status and the locations of research in the country.

Indeed, very clearly, it's an emerging area of knowledge in terms of focused knowledge and the various aspects of the disease that we've heard outlined in the previous session and again today from the early to the near-early stage, to the later and, perhaps, more chronic stages of the disease — the differences, the difficulties in diagnosis, and so on.

I think, Mr. Sternthal, you summarized very well the approach at the beginning, relying on the expertise of the doctor who sees the patients and puts it in perspective. Very clearly, it is one of those issues where in the early stages it is the knowledge of the early practitioner and the amount of information that the patient can bring with regard to their recent experience, their location, where they've been, what they thought they encountered and so on.

All of these are issues clearly need further looking at. One of the aspects of this bill is certainly to bring a heightened awareness to this issue. It directs that the minister be directly involved in that session, which will certainly raise the level of interest and should provide a considerable amount of support for those of you who have been leading this battle and building a strategy that should be a good framework for subsequent developments to occur.

Dr. Ouellette, Mr. Sternthal and Dr. Lindsay, we thank you very much for being here and the clarity of your responses to the questions is much appreciated.

With that, I'm just temporarily suspending the meeting and ask the room to clear very quickly, so we can get on with clause-by-clause.

For the public, you don't have to leave. This is going to be a public session.

(The committee suspended).

——————

(The committee resumed.)

The Chair: We are back in session. For this session the agenda item is clause-by-clause consideration of Bill C-442, an Act respecting a Federal Framework on Lyme disease.

As you know, I am required to ask you a series of questions, and the first one is to the committee: Is it agreed that the committee proceed to clause-by-clause consideration of Bill C-442, An Act respecting a Federal Framework on Lyme disease?

Hon. Senators: Agreed.

The Chair: That's agreed.

Shall the title stand postponed?

Hon. Senators: Agreed.

The Chair: That's agreed.

Shall the preamble stand postponed?

Hon. Senators: Agreed.

The Chair: That's agreed.

Shall the short title in clause 1 stand postponed?

Hon. Senators: Agreed.

The Chair: That's agreed.

Shall clause 2 carry?

Hon. Senators: Carry.