Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 24 - Evidence - December 3, 2014
OTTAWA, Wednesday, December 3, 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: Welcome to this meeting of the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
I'm Kelvin Ogilvie from Nova Scotia. I would ask senators to introduce themselves, starting on my left.
Senator Eggleton: Art Eggleton, senator from Toronto and deputy chair of the committee. I'm glad to be here with all my friends.
Senator Enverga: Tobias Enverga from Ontario.
Senator Wallace: John Wallace from New Brunswick.
Senator Stewart Olsen: Carolyn Stewart Olsen, New Brunswick.
Senator Seidman: Judith Seidman from Montreal, Quebec.
The Chair: Colleagues, we recall that we are here today with our agenda with a single item, and that is Bill C-442, An Act respecting a Federal Framework on Lyme Disease.
We have two sessions today, and the first one will begin with the sponsor of the bill in the House of Commons, Elizabeth May, who we're absolutely delighted to see with us. I will remind you that this session will end no later than 5:15 p.m.
Ms. May, I would welcome you making a presentation, and then I would open the floor up to my colleagues.
[Translation]
Elizabeth May, Member of Parliament for Saanich-Gulf Islands, sponsor of the Bill: Honourable senators and committee members, it is a great honour for me to be here to testify about my Bill C-442, An Act respecting a Federal Framework on Lyme Disease. This bill was designed in a non-partisan manner to help people across the country.
I hope that we will be able to implement this strategy in a non-partisan manner, to create a collaborative framework for federal, provincial and territorial ministers, as well as representatives from the medical community, scientific researchers, and patients groups, in order to overcome problems and allow for quick diagnosis of this disease.
[English]
I think it is increasingly clear from the hearings we had on the house side that there is a strong scientific consensus. We had evidence from Health Canada and from the Public Health Agency of Canada confirming what I had suspected. But I must say that I thought I knew quite a bit about Lyme disease before the hearings in the house, and I was quite taken aback by the evidence from the Public Health Agency of Canada.
The evidence that you'll find from the house committee, and no doubt you will hear more here, that the Acting Director General from the Centre for Food-borne, Environmental and Zoonotic Infectious Diseases, Infectious Diseases Prevention and Control Branch — I'm sure there is an acronym for that — at the Public Health Agency of Canada testified to is that within the Public Health Agency, they are now anticipating that for Canada, we can expect over 10,000 Canadians to develop Lyme disease every year, starting by the 2020s.
It is a rapidly spreading infectious disease. As was stated in the support for Bill C-442 from the Canadian Medical Association, for doctors, Lyme disease presents a real challenge. Dr. Francescutti, President of the Canadian Medical Association, said in a letter of support for Bill C-442:
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. Given the increasing incidence of Lyme disease in Canada, continuing education for health care and public health professionals and a national standard of care can improve identification, treatment and management of this disease.
He goes on to recommend specific aspects of Bill C-442. I'd like to turn to Bill C-442 itself and describe what it attempts to do and what I hope it will do very soon.
We have, as I've said, a significant public health challenge in Lyme disease. There is recognition of that, and I have to say I'm indebted to the current and past ministers of health. Under Minister of Health Leona Aglukkaq, Lyme disease was made a reportable disease in Canada as of 2009. Thanks to current Minister of Health Rona Ambrose, there was support for this bill as it made its way through the House of Commons.
The fact that the bill received unanimous consent in the house in June and now has made its way here before honourable senators is something of a tribute to non-partisanship and to the recognition among parliamentarians that a lot of their constituents are dealing with the disease and having difficulties in finding accurate, prompt diagnosis as well as treatment.
The bill calls for a federal framework on Lyme disease. There were a few changes between first reading back in June of 2012 and when the bill passed unanimously in 2014. I was amenable to any changes to speed this along, as you can imagine, and Minister Ambrose suggested a few. The title of the bill changed. It's ''A Federal Framework on Lyme Disease,'' and a number of other items changed in how the bill would work.
The primary notion here is that the minister will convene a national discussion, a conference that will include provincial and territorial ministers, medical experts from across the spectrum, as well as people within the community who are suffering from Lyme disease. Public health experts from all disciplines will play a role in coming together to do a couple of things.
I think all public health professionals would agree that it would be very useful to have a comprehensive federal framework to include the establishment of a national medical surveillance program to use data collected by the agency to properly track incidence rates and associated economic costs of Lyme disease.
[Translation]
Point number 2 is that the bill aims to establish guidelines for preventing, identifying, treating and managing Lyme disease, and for exchanging best practices across the country.
[English]
And as well the creation and distribution of standardized educational materials related to Lyme disease for use by any public health care provider within Canada designed to increase national awareness about the disease, enhance its prevention, identification, treatment and management.
The minister will, following this conference, prepare a report to set out the federal framework and publish that report on the agency's website and continue to review this process at an interval of five years after the federal framework has been established.
I know there have been some recent media reports of some very respected experts who have concerns. I don't have anything but respect for anyone who has concerns about Lyme disease. The point of this bill is not to take sides on medical issues. My intent here and the bill itself is about getting everyone to the table.
We were very fortunate, and I want to thank you, Mr. Chair, for also the work of the Health Research Caucus, which coincidentally was today, and it was so well put by both experts who met with us today over lunch; it was just pure coincidence that we were together. Dr. Moriarty and Dr. Ogden were very clear that we need to bring everybody to the table and share information. There is a scarcity of research dollars on this topic.
This bill cannot include dollars because it's a private member's bill, but it will mobilize resources, raise awareness and contribute to getting help to people who need it.
The Chair: Thank you very much, Ms. May. I will now open it up to my colleagues.
Senator Eggleton: Thank you for being here and congratulations on doing this. It's a terrific thing. I'm glad you got it through unanimously.
You said some people are concerned about this and are not sure this is the right direction. I should ask them what their concerns are, but they may or may not appear here, and just in case those concerns come up later I will give you a chance to express what they are and also at the same time what you think the response to them is.
Ms. May: As I said, some knowledgeable people unfortunately missed the two-year window when the bill was before the House of Commons. I hadn't heard about their concerns. I did speak with one of the experts who was slated to be a witness when we were originally going to meet October 22. I should have reviewed your witness list by now to find out if he is still coming.
I did speak with Dr. Parker. His concern is not, as I understand it, with the bill itself, and from media coverage and interviews with other people from the infectious disease community, it appears that they have put an interpretation that I did not intend on certain sections of the preamble. The operative clauses of the bill do not seem to concern anyone. Since I am not a medical expert but I am a former lawyer and I did study statutory interpretation in law school, I tried to reassure them that they really shouldn't worry about the preamble much at all, that amending a preamble when the body of the bill hasn't been amended is simply rare to happen even in the House of Commons and would be procedurally quite challenging in the Senate, if possible at all without outright killing the bill.
I don't think they seek to kill the bill. I think we all agree there are many aspects, and the operative clauses of the bill don't seem to trouble anyone.
To give you a fuller answer, senator, the difficulty is with a very contentious argument which I had hoped to avoid in the way my bill is drafted. The contentious argument is between those who subscribe to the belief that there is something called chronic Lyme disease from which people have a hard time recovering and can be completely bedridden. The certain group within the medical community, and I'd say probably the more establishment view, is that there isn't such a thing as chronic Lyme disease; there is post-Lyme disease syndrome, in which people are also left completely debilitated.
I am not a medical expert, and that's one of the places where the issue has become increasingly politicized. Some of the debate in the United States has raised the concern level of some of the experts in Canada that we would attempt as legislators and parliamentarians to politicize medical questions. I don't want to go there or do that. I thought we had drafted it in a way that that would not occur because the whole operative part of the bill is to have a conference with the experts all present. I think that once the bill has Royal Assent, and I would be very grateful to this committee for recommending it to the Senate for passage and Royal Assent, it will at that point deliver on a promise of fair, impartial and inclusive discussions at a conference convened by the Minister of Health.
If the bill had significant flaws scientifically, those would have arisen in the testimony from Health Canada and the Public Health Agency of Canada.
Senator Eggleton: The people who have those concerns could appear at this same conference that is convened.
Ms. May: They absolutely intend to and they know they will be included.
Senator Eggleton: You mentioned the United States. I have heard about the differences in approach to Lyme disease in the United States and Canada. Is that the essence of it, or is there more to it than that?
Ms. May: I don't want to presume to speak for others, but what I have observed is that there has been a lot of legislative efforts at the state level in the United States around the treatment of Lyme that have gone farther than some in the medical profession even in the United States would have wanted to see. There are some articles in the literature about politicians who aren't doctors presuming to tell doctors how to treat Lyme disease. That's what I wanted to avoid.
That concern was raised to me before the bill even had first reading. That is what I was hoping to avoid in the way it was drafted. I think we have avoided it. As far as I know, no one is concerned about the operative sections of the bill, but only on one or two potential misinterpretations of what was intended by preambular language.
I don't think it's a serious dispute. It's deeply felt, but in the context of what the bill will do, the bill will assist coming to terms with even the contentious issues, which I don't believe parliamentarians should resolve. I think that's a matter for bringing in experts and figuring out, as the bill calls for, what is the best way, and I will double-check because we did amend the language; I want to make sure I use it exactly right: finding the establishment of guidelines, the sharing of best practices.
This is language that I accepted that came from the Minister of Health amending some of the concepts that were in the first draft of the bill. This language is respectful to all parties concerned.
The process of a conference will ensure that it isn't parliamentarians who decide how Lyme disease should be treated, which is the complaint I hear about what happened in the United States. This bill will ensure the right approach to Lyme disease, which is clearly an issue of growing concern. One of the experts we heard today said that at its current trajectory, Lyme disease will be the third-most prevalent infectious disease in Canada very soon. We have to prepare. We have to increase levels of awareness for prevention. The good news about Lyme disease is that when properly diagnosed quickly, treatment is easy and totally effective. We have problems when it's not diagnosed quickly; and that's why we need to expedite the passage of this bill and hold the conference.
Senator Seidman: Congratulations on a wonderful piece of proposed legislation that obviously has important implications for Canadians.
I want to ask about an amendment to the bill made in the House of Commons committee. The bill was amended to remove references to national standards of care and to include a reference to sharing of best practices across Canada, which you just referred to. What are the implications of this? Does this have a negative impact on the bill in any way if you change the language removing national standards of care?
Ms. May: It certainly is the case that the constituency of people with Lyme disease did not support that change. There was an effort to maintain the language of national standards of care. I'm very impressed with and have publicly said and will say so again and should have said so from the beginning how grateful I am to two previous health ministers, and certainly Minister Ambrose has been nothing but helpful. She asked for this change because it will not offend jurisdictional concerns. Her concern was that talking about a national standard of care put the federal government in a different position with regard to treatment. The application of our health care system is provincial, and the standards in the Canada Health Act are federal; so it was seen to be of some concern by some of the witnesses.
I supported and accepted it. I'm grateful that we can do something in Parliament as a whole to provide the profile. We couldn't put money in this bill, but Minister Ambrose certainly has suggested that there are funds within Health Canada that will go towards raising awareness and helping with research. You'll probably hear more of that from other witnesses. There is a difference in the language, no question, but I don't think it hurts the bill.
Senator Seidman: Basically, if I understand you correctly, you're saying that health is a provincial responsibility. This ensures better acceptance of the bill. Of course, the Minister of Health is very wise in understanding how this works. There is no question that sharing best practices across the country is something we always strive for.
Do you know of any regions in the country where best practices are being implemented? And are they being shared across jurisdictions?
Ms. May: There is certainly growing awareness. It's less frequently reported that patients are attempting to find a doctor who will accept the idea that they have Lyme disease. It's still occasionally reported from different parts of the country that there is an institutional resistance to admitting that Lyme disease exists in Canada. Obviously, since former Health Minister Aglukkaq put forward that Lyme disease is a reportable illness, we do not have that barrier at the federal level. That has had an impact, I believe, on provincial governments and health authorities.
We have the problem of catching up, which the Canadian Medical Association mentions. I should mention as well that the bill is supported by The College of Family Physicians of Canada. They note that the guidelines produced as part of the strategy should include the input of family physicians. They're also looking at this. How do they know how to cope with something that wasn't taught in medical school? We know it's spreading rapidly and isn't something that most doctors expect to see. It presents with such a strange pattern of symptoms that it can be mistaken for many other things.
Doctors have contacted me to express concern that people might be misdiagnosed with Lyme when they have multiple sclerosis and vice versa. There is no harm in bringing everybody together in the sharing of best practices.
I can't say that one jurisdiction in Canada is excelling in this. There are spotty improvements, and they mostly tend to congregate around specific physicians who have encountered Lyme disease, educated themselves and are doing the best they can. I often compare it to ultraviolet and the thinning of the ozone layer. When I was a kid, we didn't have UV postings to know whether this was a day you had to put on sunscreen. When my daughter was little, I checked the UV index to decide if she needed a long-sleeved shirt before letting her out to play.
Prevention is something you have to learn, and societies have to adapt to it. We need to have better awareness when people go into an area of whether ticks carrying the bacteria are endemic to the area. People need to have that awareness of tick-prevention behaviour in terms of the clothing to wear, how to conduct themselves and how to check for ticks. These are preventive measures. Some parts of the country are getting better at it than others. We just discovered that ticks bearing the bacteria have been spotted in Rouge Park outside Toronto. We'll have to start sharing best practices on how to educate people before they go hiking in an area where bacteria-bearing ticks are present. I don't want people to stay out of nature. I want them to explore nature; and I want them to be safe. It's the same kind of thought process and societal shift we went through around UV indices. We need to have the same kind of awareness around how to prevent exposure to ticks and how to respond if you think you might have Lyme disease.
Senator Stewart Olsen: There is a study at Mount Allison University by Dr. Lloyd on ticks. She's done fairly extensive work. Perhaps a bit more alarming than what you're saying, she is finding no single bacterium and that ticks carry many types of Lyme disease that do not show up in the standard testing. She suggests that we have no idea how many people in New Brunswick are affected and that we're using 10-year-old methodology to try to discover how people are affected. She's urging the provincial government to get to work on this. Is that your finding, generally, throughout the country?
Ms. May: I always like to stress that I don't want to present as though I'm an expert on the disease as I am learning more every single day. It's clear that Borrelia burgdorferi is not the only bacteria that can communicate Lyme disease to patients. There are other strains, other bacteria and other kinds of ticks. That was a very interesting finding from our discussion with experts today. There are other ticks that bear Lyme disease, but they're not as likely to come in contact with humans.
We do need more research. I know this committee has done a lot of fine work in the area of pharmaceuticals recently, and looking at the question of infectious diseases has been one area with relatively less emphasis in recent years because it was not one of the areas of hot new research. We're going to have to come back to looking at infectious diseases.
One of the questions will be — Dr. Lloyd clearly knows a lot more about it than I do — that there are different strains of bacteria and different forms. That's one of the things that make it hard to diagnose. I think you'll hear from other experts that the different laboratory tests we know about are unreliable. False positives and false negatives are at a fairly high degree. The doctors I know who are involved in this issue as clinicians have said — and this will be something that the national conference can determine — that the approach one should take is a clinical diagnosis because the lab tests are so unreliable.
Senator Stewart Olsen: Thank you for that. Her findings so far, and she has really just started, are that in New Brunswick, for instance, we have a hybrid strain of N40. She is suggesting as well that, much like with cancer patients, they have a peer group society who get together where there are academics, physicians and a whole spectrum of people getting together to support people who may have Lyme disease or may think they have Lyme disease. Have you seen anything like that in Canada?
Ms. May: Yes. I'd have to say it's an extraordinarily mobilized population. Considering that people who have Lyme disease are dealing with pain, fatigue and mental confusion and that their family members are dealing with the strain of trying to assist them, they're brave and they talk to each other and email and communicate and coordinate. I think one of the reasons, if not the reason, that Bill C-442 received unanimous consent isn't anything I did when the bill was put forward for first reading, other than putting a petition on my website and inviting people to help promote the passage of the bill. So many Lyme disease patients and their friends and families collected petitions and went to see their own member of Parliament. Members of Parliament met with their own constituents and become educated about the challenges. They really are an extraordinary community.
With that said, they might get some of the science wrong. This conference will help get the wheat from the chaff. For grit and determination and personal courage, I'm in awe of someone like Nicole Bottles. She lives just outside my riding. I'd love to claim her as my constituent. She's actually Murray Rankin's constituent. She's been in a wheelchair for years. She stopped being able to attend school years ago. She has championed this. She testified in the house committee. She has managed now to get through high school, taking courses online. Her situation and mental clarity are improving, but she still can't get out of that wheelchair. I look at someone like Nicole and her mom Chris, and I'm overwhelmed by the determination of people who are suffering and trying to find answers and to help others. This is a big motivation for a lot of those who are dealing with Lyme disease, to increase the level of awareness so other people don't get it.
Senator Enverga: Thank you for the presentation. I was reading all the details that we have, and I understand that people with Lyme disease should be cured and we have to prevent them from spreading the disease. I read in the framework there's guidance for the prevention, identification, treatment and management of Lyme disease.
I know you believe too that prevention is better than a cure. Why are we focused more on Lyme disease and not the ticks themselves? Why can't we find a way to find out where those ticks are and destroy them? Isn't it better for us to look for that at the same time?
Ms. May: Senator, I certainly don't disagree. That would be very helpful, and that's something that certainly could happen with mobilization of resources. People could look at that as a solution, but it appears that the ticks are not located in just one area but are spreading. They're spreading in Europe as well. There are reports of spreading that you'll probably see in the evidence from the Public Health Agency of Canada. As Lyme disease and the range in which you find the ticks spread, I think it would be particularly difficult to find them and eradicate them.
Canadians, once made aware of a threat, such as UV radiation, can take sensible precautions to avoid the impact of contact with the tick, by choices of clothing, careful self-surveillance and checking kids for any signs of having been bitten. There were some very practical tips that just come from greater levels of awareness. I think in the long run that would be less expensive, more practical and a quicker solution than the one you proposed. I'm not opposed to what you're suggesting, but I'm looking for what's practical and low cost.
Senator Enverga: We had a problem with a certain tick in our corn, and they had a natural defence against them. I think we should look into it.
Ms. May: I'm not against looking into it, not at all, but the bill is focusing on the prevention piece of public awareness. In terms of the guidelines regarding prevention, there's nothing in the language that would preclude an aspect of prevention. Maybe some researcher can figure out how to eliminate the ticks carrying the bacteria, but the main focus of the bill is on public awareness for personal, preventive approaches to exposure to ticks.
Senator Cordy: Thank you, Ms. May. It's a pleasure to have you here at our committee. I've certainly heard from many people who have Lyme disease. I've met with Nicole and Chris, and they are indeed very brave people. These people are begging for help, so thank you very much for bringing your bill forward.
It was interesting also that you spoke about the confusion sometimes between MS symptoms and Lyme disease. I've done a lot of work on MS. When I was at the national CCSVI conference last year, there was a session on Lyme disease, and this year we've had sessions on Parkinson's. It's interesting that people are coming together and saying we have to work together to see what we can do in order to help Canadians.
One of the things I kept hearing over and over again was about the testing for Lyme. As you said earlier, the range is getting bigger and bigger. It used to be that if you were taking a trek through the woods 20 miles outside of the city, then you might feel at risk. Now it's actually within the city of Halifax, which is where I live. I have lived in Dartmouth and Bedford, and ticks and Lyme disease are showing up there.
My understanding from all the emails I've gotten from people is that the testing is not good in Canada and that there are a lot of false negatives. That is a problem. Is there anywhere in Canada where the testing is improving?
I also heard that people were going to the United States and paying on their own for testing. The test determines that they have Lyme. They're coming back to Canada, and the medical system is not accepting the test results that they have had done.
Ms. May: The issue of the lab testing, there's an ELISA test and blot test. Again, I don't want to present myself as an expert on any of this, but I've had the same nature of conversations. Dr. Ted Cormode is one of the doctors I talked to a lot about this. He wanted to testify to the house committee but scheduling just didn't work out. He's also very involved in the Canadian Medical Association.
The concern is that since the lab tests are unreliable, the worst thing you could do is make the lab test the sine qua non to treatment. Anecdotally, I must have heard dozens and dozens of stories of patients who say, ''My symptoms match up with what I found online with something called Lyme disease, and I was walking in the woods, and I did have a rash.'' The doctor will send away for the test, and the test comes back negative, so they move on to the next question. It's not Lyme disease, so what else could it be? You miss a critical window for when you can apply antibiotics, which can make all the difference. If you rely on a lab test, it better be accurate. That's part of the problem. It's not to criticize where we are with lab tests; it's just to say they're only one tool and they're not definitive.
Again, as a layperson, I'm hopeful that when this conference with medical experts and provincial, territorial and federal departments of health and the Lyme disease community and researchers all come together, at least we can create a greater awareness for doctors. As was presented earlier today from the Public Health Agency of Canada, if you're suspicious of Lyme disease, it's a good idea to have a prophylactic, single application of antibiotics to be on the safe side. I think a lot of people would have been saved a lot of misery had that general suggestion, which is now coming from the Public Health Agency of Canada, been something that doctors right across the country were more prepared to assume as part of sharing of best practices.
Senator Cordy: Like you, I'm a layperson, so anything I've read is that treatment has to begin immediately to be most effective. I agree with just administering antibiotics if it's suspected.
We've got on record 128 case cases in 2009 and 315 cases in 2012, which is a significant jump. That's more than double, yet what I read is that this is only a small portion, that the actual number of people with Lyme disease is significantly higher. Do you have any recent numbers on that at all?
Ms. May: Well, we do know that the Centers for Disease Control and Prevention in Atlanta, Georgia, recently determined during the course of the summer of 2013 that the incidence of Lyme disease was probably so under-reported that they boosted by tenfold their estimate of Lyme disease within the United States. They estimated it to 300,000 cases per year as opposed to 30,000.
Within Canada, taking the one-tenth measure, we're probably looking at significantly more cases than what's actually being reported. Of course, it's only been reportable since 2009, so it's very likely that there is a substantial amount of under-reporting.
Senator Cordy: Thank you. That's helpful. If it has more than doubled from 2009 to 2012, one can assume from 2012 to 2014 that it has at least doubled, if not more, and multiply that by 10.
Regarding another change that was made on the house side, you've gone from a national Lyme disease strategy to a federal framework on Lyme disease. What difference will that make?
Ms. May: I think it's really a semantic difference. I don't think it substantively affects what the bill proposes to do, which is to create this conference and to share best practices. It is, again, language to be sensitive to jurisdictional concerns in that we not call a bill that comes out of the Parliament of Canada a ''national strategy'' but rather a ''federal framework.''
Senator Cordy: To me, it just seems ''national'' would have been more inclusive, but who am I?
Ms. May: I started with ''national,'' but as I said, I regarded changes that were proposed to me — these were amendments. Of course, I couldn't amend my own bill in committee because I wasn't a member of that committee because I'm not a member of any committee. As soon as I get 12 Green MPs, then I can be on committees. For the moment, I can present amendments to committees, but they're deemed moved. It's a long story.
In any case, these were amendments that came from the government side in the House of Commons with my full support. The important thing to me was not to get hung up on semantics when the bill itself needs to get passed.
Senator Cordy: I agree, and let's get it passed. Thank you.
Senator Wallace: Thank you. Ms. May, the topic you're addressing here is obviously critically important across the country. There's no doubt about that.
With some of the background information and work you've done in preparing this bill, just educate me a bit: What is the most prevalent source of ticks that carry Lyme disease in this country?
Ms. May: They can be carried by deer. They can be carried by migratory birds. In terms of the prevalence and extending the range of the ticks, migratory birds can take them the furthest. In terms of the population of animal most likely to be carrying a lot of ticks, we would be looking at deer, but they can also be carried by household pets. Certainly dogs were mentioned by a number of people who study this area. Of course, they can attach themselves to humans, which is rather the problem.
And they don't have to be attached to animals at all. There have been cases of Lyme disease where people have encountered a tick simply in their backyard. It's not just a question of wilderness activities and hiking far from a backyard. The ticks can be prevalent even in backyards, which is another reason for better surveillance and prevention information.
Senator Wallace: Is any regular testing occurring anywhere in the country for the presence of ticks?
Ms. May: Not that I'm aware of. There are researchers and they are trying to determine where they are, but it has not been possible. I don't know of any national effort to consistently monitor.
There are events that happen. A Cooper's hawk flew into a window on Vancouver Island. This was slightly less than a year ago. It was found and reported and taken to the provincial wildlife authorities, who were surprised to find that the animal had 22 ticks attached to it. On birds, they tend to attach around the eyes. When they examined these ticks, they found that a number of them were carrying the Borrelia.
One would have to say that our approach to monitoring the spread of ticks is somewhat anecdotal and not systematic.
Senator Wallace: That leads me to Senator Enverga's question. If we don't know where the ticks are, if we're not sure where they're originating from, how do we eradicate them?
I applaud you for what you've done here. You're absolutely right; you have to get the best minds and experience together to begin to address that. I know your bill doesn't address this, but ultimately, eradication of the source of Lyme disease I would think has to be a medical solution.
Is any work occurring in the country that addresses or is attempting to address the eradication of the ticks?
Ms. May: Not that I'm aware of.
I wouldn't want to exaggerate the notion that we don't know where they are or where they're coming from. The Public Health Agency of Canada has quite good mapping that tells us where they are spreading to and what the expected range will be within a decade or two. One of the contributing factors is warming climate, so the range of the ticks is spreading due to that. They're also, again, spreading through the activities of migratory birds. We are keeping track of the range at which they're spreading. I would just say it's not entirely systematic.
I don't know of anyone at this point who is researching eradication, but that's a very good point.
Senator Wallace: You advocate, and it makes complete sense, that we adopt best practices and we learn from the experience of others, not only, I would think, best practices across the country but best practices internationally.
You've mentioned the United States and the work they're doing. Are there other international jurisdictions, other countries that are experiencing — I think you've alluded to this — the same problem that we have? Are there best practices that we should be looking at from those countries?
Ms. May: That's an excellent question, senator. One of my colleagues and friends, the MP for Mississauga East—Cooksville, Wladyslaw Lizon, being from Poland, came back with stories wherein he is just astonished by how much it's spreading in Poland.
I can't speak to this authoritatively, but in Germany there are vaccines against Lyme disease, and there are very different courses of treatment there. Although the bill speaks of best practices throughout Canada and convening experts, Canadian health authorities generally look beyond Canada's borders. I'm sure we will be looking at what practices are in the United States and Germany.
It was interesting to hear from Dr. Ogden of the Public Health Agency this afternoon at a gathering of the Health Research Caucus, but Dr. Ogden trained in the U.K. and started studying Lyme disease quite a long time ago in his PhD research in the U.K. We surely should look beyond our borders to see what people are doing.
Senator Wallace: Congratulations, and thank you for your great work.
Senator Eggleton: Sitting here listening to all of this, and bearing in mind that this is televised, some people may not be familiar with Lyme disease. Maybe you could give us a quick synopsis as to how you get it or how you avoid it and what you do if you've got it and what kind of symptoms you can expect.
Ms. May: That will be great, and I will do very well to stick with the language from experts so that, as a non-expert, I'll get the language pretty perfectly if I just read from the Health Research Caucus.
Lyme disease is a serious illness that's on the rise in Canada caused by the bite of blacklegged ticks infected with the bacteria Borrelia burgdorferi. The geographical distribution of the animals that host the infected ticks is expanding, and so are the cases being reported. Health Canada is reporting a more than 300 per cent increase in reported cases since 2009. Symptoms will vary: Some people will have hardly any symptoms, while others will have severe symptoms that may first present weeks after the initial infection. Symptoms may include fatigue, rash, fever or chills, spasms, numbness or tingling, cognitive difficulty or dizziness, nervous system disorders, muscle and joint pain, abnormal heartbeat. Without diagnosis and treatment, symptoms may last for years. Fatalities have been reported.
In other words, this is very serious, and Lyme disease patients may present to their physician in a way that has so many confusing symptoms. It can look like fibromyalgia in one person, arthritis in another. I'm afraid I've had a lot of people who have come to me and said their doctor sent them to a psychiatrist. It's very hard to diagnose and it's easy to misdiagnose. The good news again to stress for people watching is that it can be easily treated if quickly diagnosed. People may think the classical bull's-eye rash is a requirement of Lyme disease. If you have a bull's-eye rash and you look like you were bitten, chances are you've been exposed and you have Lyme disease and should get a course of antibiotics.
But if you have the symptoms and don't have the bull's-eye rash, don't infer that means you don't have Lyme disease, because you might. As always, patient advocacy is a smart thing to do. A good way to test if you did have Lyme disease, if you happen to still have the tick, is to put it in a baggie with some moist cloth and preserve the tick. If it's tested for the bacteria, that's a much more reliable test than testing the blood serum of people who may or may not have it.
There's a lot of good information we'll get through this conference.
Senator Eggleton: Is it true that it's primarily in a wilderness area that you would get it? You mentioned Rouge Park near Toronto, but you wouldn't get it in downtown Toronto or downtown in any city?
Ms. May: You would have to come in contact with ticks. The question is would you have ticks in downtown Toronto? Probably not. Although there are some nice little patches; I think downtown Toronto has some lovely areas. We have at least some reported cases of people who got Lyme disease from playing in their backyard in a relatively suburban context. Of course, suburban context where I live involves a lot of deer traffic.
Senator Eggleton: What should people do to prevent it? Cover up? Spray?
Ms. May: All of that, and also check family members for ticks after you've been outdoors; make it a routine.
A piece of advice from earlier today was to shower after being outdoors because the ticks take a while to settle. The nymph phase of the tick is almost invisible because it's so small. You may or may not see a tick. It's just a set of precautions we'll have to get used to if you're in areas where ticks are endemic. That's part of the prevention, awareness and surveillance piece of setting up the federal framework.
The Chair: Ms. May, this is has been a great opening session on this bill, and I, too, congratulate you on bringing this forward.
I'd like to touch on a couple of questions that were raised, for example Senator Wallace's question about other parts of the world. One of the things that further illustrates the complexity of this issue is, for instance, in Europe the bacteria generally identified as associated with something you might refer to as Lyme disease are different bacteria than those here. If you look at the distribution around the world, there are probably some 15 or 20 different bacteria that have been identified that give symptoms that are considered in this area. Some may be much more susceptible to a vaccine-type approach because they're easier to study and handle, and others are not. This gives further emphasis to the importance of the objective of this bill.
Are there any systematic efforts to detect ticks? In Nova Scotia certain research centres around the federal Department of Agriculture regularly encourage people in the region if they get a tick on them to put it in a little container and bring it in and have it analyzed to determine whether in fact it is the blacklegged deer tick or the so-called dog tick, the bigger one that may cause a bite but doesn't carry this particular disease.
They do, if you like, an informal approach, but with regard to a national strategy to this, I think it's probably not feasible, for one thing. Secondly, it isn't, to my knowledge, occurring.
However, as somebody who does live in the country and is aware of these rascals that run around, it would be wonderful to think there might be a possibility of eradicating them, but I would suggest that if we ever find a way of eradicating ticks, there are an awful lot of other things we will be able to eradicate a lot more easily as well. I would love that to happen. If we can satisfy Senator Enverga's request I will be an immediate beneficiary, and I hope your conference leads some way to doing that.
The evidence suggests that the kinds of things that you indicated, and that were reiterated again today with regard to prevention, the best prevention is to detect and check yourself when you've been in an environment outdoors. However, the scary thing in that regard is that there was a time when it would be confined to those who had gone hiking in certain parts of real nature, but today it's in communities. Remember they're carried by deer.
I was struck by a deer inside a large community. My automobile was run into on the side by a deer right in the centre of a major village. The reports of accidents with deer are increasing in populated areas. Deer carry those.
Coming back to Senator Eggleton's questions, we know that certain animals have learned they are safer in populated areas today than they sometimes are outside. All of this, I think, gives additional and great urgency for getting under way with the development of the knowledge that your bill will hopefully lead to, in the event that we are able to recommend it forward.
I want to thank you very much for bringing the bill forward, for giving us this opportunity to review this important case, and ultimately to this committee to make a recommendation to the Senate of Canada.
For this session we have two different organizations presenting. We have, from the Canadian Lyme Disease Foundation, Jim Wilson, President and Founder. From the Association of Medical Microbiology and Infectious Diseases Canada, we have Dr. Daniel Gregson, President; and Dr. William Bowie, Professor of Medicine, Division of Infectious Diseases, Department of Medicine, University of British Columbia. Welcome.
Colleagues, just before I invite them to testify, I will remind you that this session will end no later than 6:15 p.m. I will welcome the witnesses, invite them to make their presentation, and then I will open the floor up to questions from my colleagues. I don't have a determined priority, request or anybody jumping up to go first. I will invite Mr. Wilson to present first.
Jim Wilson, President and Founder, Canadian Lyme Disease Foundation: Thank you for giving the Canadian Lyme Disease Foundation this opportunity to speak before you today. 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 thousands of Canadians. Lyme disease is a bacterial infection caused by Borrelia, so Lyme disease is a borreliosis. There are many strains, and more strains are still being discovered as technology improves. There are currently no human blood tests in Canada for many strains of Borrelia, yet we have rigid guidelines imposed upon doctors and the unsuspecting public, all based on a poor one-strain test that left us with a poor understanding of the prevalence and spectrum of the disease in humans.
Also, very little is being done to look at co-infections that can be acquired from a tick, along with Lyme disease, or that can be acquired as a stand-alone infection. Either way, the patient is very sick and is often left with no help or recourse.
People with borreliosis or co-infections become not only the victims of the disease, but they then become the victims of very narrow guidelines that are incorrectly referred to as best practices. The U.S. government announced, as you previously heard here, that they bumped the numbers from 30,000 to 300,000 cases. That's significant.
That massive increase took place under the current guidelines, which have ignored thousands of research studies that contradicted what was in the guidelines. The guidelines were not written with scientific ethics in mind. By following the same poor guidelines that are so staunchly defended in Canada, we have a similar per capita problem with regards to the number of cases.
Physicians will not diagnose and treat late Lyme disease, claiming they must follow these currently accepted best practices. But thousands of people who chose to ignore best practices and sought treatment now have their life back, including myself and my daughter. My son didn't make it though. He passed away in 2005.
I contracted Lyme disease in Dartmouth, Nova Scotia, in 1991. My children contracted their infection in B.C., a decade later, along with other children in our neighbourhood, another of whom is deceased as well. Canada has no idea how many people have died from Lyme disease because chronic Lyme disease does not exist according to current best practices. Therefore, why look for something that does not exist?
Patients were too lowly to be listened to, despite our warnings since the early 1990s. In response to our requests to be at the policy-making table over the years, we were told we we're just advocacy groups; end of story, no discussion allowed.
We are called anti-science or promoting junk science. Yet we have expertise in all the necessary fields of science and medicine at our fingertips on four continents. Current best practices were set without any expert input from the patient side of the equation. As a result, we now have decades of undiagnosed and misdiagnosed Lyme disease causing chronic disability and death Canada-wide, but we have no idea as to the extent.
Science and technology have improved dramatically over the past decade, and what is becoming clear is that the patients were correct. As we said, Lyme is caused by many strains of Borrelia. We were saying that in the 1990s.
It's not only caused by the strain of the organism that our tests are picking up. Lyme disease can persist as an active, ongoing infection beyond the recommended short-term antibiotic regimen imposed upon doctors Canada-wide. Lyme disease is being misdiagnosed as other conditions, for which people are given improper medications, often with serious consequences. A current article placed doctors as one of the highest-risk occupations for suicide. We know from speaking with many physicians that they feel that they have been stripped of the ability to doctor properly, using good judgment derived from their education and experience.
Lyme disease patients also have a high risk of suicide because they too have been abused by the same system that said they have no right to question best practices. It is a system of institutional bullying.
By leaving guideline construction and the review of the quality of evidence used in those guidelines to just medical bureaucrats, it becomes a guideline of one mindset or tunnel vision, just as the Institute of Medicine of the National Academy of Sciences in the U.S. determined in their review of the current Lyme guidelines.
Canadian Lyme Disease Foundation, in our support of Bill C-442, has always maintained that we want a combined global scientific perspective from Europeans, South Americans, Central Americans, Asians, Africans, Australians, Russians, Middle Easterners and North Americans. Borreliosis is a serious global problem.
Bill C-442 is fine the way it is. The preamble is fine. It begins to allow the patient and their expert to have equal input into the development of best practices that determine their life outcomes. This is long overdue, and we cannot go backward from here. Thank you.
The Chair: Thank you, Mr. Wilson.
Dr. William Bowie, Professor of Medicine, Division of Infectious Diseases, Department of Medicine, University of British Columbia, Association of Medical Microbiology and Infectious Diseases Canada: Thank you very much. Lyme disease exists in Canada and is becoming more frequent. Individuals who present with Lyme disease and who are diagnosed and managed with recognized and evidence-based approaches are almost always cured of their acute infection. Infectious disease clinicians see relatively few of these individuals, mainly because they are adequately managed in the community.
Much more often, our members are asked to evaluate individuals who believe they have or might have Lyme disease but who do not meet any of the standard diagnostic criteria for active Lyme disease. Many have no history of contact with ticks, have none of the recognized objective manifestations of Lyme disease, have negative tests using well-evaluated laboratory tests, and if given antimicrobials that should be active against Lyme disease, have not been cured of their symptoms. The vast majority of so-called positive test results from for-profit laboratories that use non-standardized methods and give test results are discrepant compared to standard methods. There are many of these individuals in Canada, and typically they have severe and often disabling symptoms.
These people deserve efforts to make a correct diagnosis and deserve access to management plans that allow them to recover. They should not be labeled as having Lyme disease on the basis of subjective criteria, and they should not be exposed to long courses of antimicrobials and other medications for which there is no compelling evidence of benefit but which carry risk to them and society.
We support the first and third recommendations of Bill C-442. For the first recommendation, we strongly encourage the tracking of the incidence and economic costs of both those with Lyme disease and those who believe they have Lyme disease tracked as separate entities. We strongly support having good management guidelines for Lyme disease, developed using the same rigorous methodology as in the development of all other infectious diseases and other medical guidelines.
We strongly disagree with the preamble suggesting that existing guidelines are ''restrictive'' and abandon sick people with treatable illness. This wording appears to be based on the premise that the most common guidelines in place developed by the Infectious Diseases Society of America, IDSA, are faulty and do not apply to Canada and that there are better guidelines out there, presumably meaning the guidelines developed by Lyme advocates and so-called Lyme-literate physicians. These beliefs do not stand up to scrutiny.
Because of the beliefs of and the political pressure applied by Lyme advocates, the most recent 2006 IDSA guidelines underwent an extensive review. In an independent review, both the process of their development and the content were fully supported. In stark contrast, the International Lyme and Associated Diseases Society, ILADS, document, which directs much of the management by so-called Lyme-literate physicians, was reviewed by the U.K.'s Health Protection Agency and found to be so flawed in almost all aspects that the guidelines were rejected.
Three quick anecdotes about Canadians managed according to ILADS guidelines: A woman diagnosed with Lyme disease using unapproved tests is treated with long-term antimicrobials and then proceeds to lose sight because the correct diagnosis of MS was delayed. A patient diagnosed by alternative methods or approaches died during treatment of a severe allergic reaction to unnecessary IV antibiotics. There was no Lyme disease by any reference test or at postmortem examination. A Canadian developed life-threatening sepsis from a catheter line that had been implanted and used for four months to provide unneeded antibiotics.
In contrast to ILADS guidelines, we strongly support having current, evidence-based guidelines like those of the IDSA. Fortunately for Canada, the IDSA, along with the American Academy of Neurology and the American College of Rheumatology, is co-leading an exhaustive effort to update the guidelines. The Association of Medical Microbiology and Infectious Diseases Canada, AMMI Canada, is participating in this process and will have the opportunity to comment on drafts once they are finalized. We welcome having a recommended national standard of care but insist that it be based on solid evidence and not anecdotes and belief.
In conclusion, we support this bill, although not quite in the manner in which it has been proposed and in which the preamble reads. We strongly support efforts to optimize our understanding, prevention and management of Lyme disease in Canada and the research and other activities needed to do this.
However, even more strongly, we hope that this bill can be used to improve the lives of the many Canadians who believe they have Lyme disease but rarely do and whose lives are very compromised and difficult. These people deserve concerted efforts to fully evaluate them to detect alternative diagnoses for which managements exist, and whatever their diagnosis, supports to improve their lives and the well-being of them and their families.
The Chair: Thank you. I'll now open it up to questions, and I'll begin with Senator Eggleton.
Senator Eggleton: Dr. Bowie, I'm a little confused by the comments you made. You disagree with the preamble, I understood that, but you agree with the operative parts of the bill and the conference to be held where you and all other stakeholders would have an opportunity to be heard. You're getting into diagnosis and misdiagnosis and suggesting that a lot of people believe they have Lyme disease but rarely do. Is that a large percentage? I also heard one of you mention that the tests are not always indicative of what the person has.
What is the problem? Do we need a lot more research in this? What do you suggest?
Dr. Bowie: As an academician, I will always support research. However, in answer to your question, there's a lot of misunderstanding about Lyme diagnosis. Early Lyme we will treat without having any diagnostic proof. It's a clinical diagnosis, based on manifestation, such as the rash that was mentioned or neurological or other findings. Laboratory tests don't help in the evaluation of those folk or management because we don't need them. For early Lyme, as for any early infectious disease, tests are negative. It takes a while for antibodies to develop.
For late-proven Lyme or Lyme in patients who have objective, obvious manifestation of Lyme disease, the tests are actually very good. The issue is that there is a difference of opinion between Mr. Wilson's folk and us. Where people believe they have Lyme, we believe they don't. What's the issue?
Many of these people have chronic fatigue syndrome, which maybe 5 per cent of the Canadian population have at any time. Test results from laboratories in the United States, some of which are for-profit laboratories, have their internal methodology, have steadfastly refused to participate in any of the standard evaluations that would be done to attest any diagnostic test we use, probably get incredibly frequent false positive results.
This has been partly looked at. A paper just came out in the Clinical Infectious Diseases journal that looked at results in patients who thought they had Lyme disease and people who were felt to be entirely normal. Testing was done according to the standard criteria that we would follow in two for-profit laboratories that consider themselves Lyme diagnostic laboratories. In one of those Lyme diagnostic laboratories, so-called, over 50 per cent of people who were totally well and had no evidence of disease were said to be positive.
The Chair: Are those published results?
Dr. Bowie: This paper just came out in the last week or two in Clinical Infectious Diseases. I would be happy to give you the reference, if you wish. There is also an editorial along with it.
The Chair: I want to be clear as to whether they have stood the test of peer review or whether it's hearsay. That was my issue.
Dr. Bowie: This is a peer-reviewed paper by solid investigators.
Senator Eggleton: Elizabeth May said that on the infectious disease chart, this has moved up to number three. In the United States, they have gone from about 30,000 in one year to about 300,000 identified cases, as they referred to them. Are you disagreeing with that?
Dr. Bowie: I doubt that it's going to be number three, but I don't think that matters. The important thing is that Lyme disease is clearly becoming more frequent and it's spreading in Canada.
We and colleagues, the federal government, provinces and academia have been tracking this for 20 years. Some of the data that's looking at the increased number of cases and the increased spread is Canadian data derived by Canadian scientists. There's somehow an impression here that this work is not going on. It is going on.
Senator Eggleton: There's obviously a problem here that needs some attention. Mr. Wilson talks about his own son and another neighbour who died. There obviously is some problem in diagnosing this and getting the proper treatment at an early stage.
Dr. Bowie: Alternatively, people who are being diagnosed and managed as having chronic Lyme do not have Lyme and are being subjected to a false diagnosis and long courses of antimicrobials that pose a risk to them and to the families and environment around them to antimicrobial resistance and diseases like Clostridium difficile. That's largely what it comes down to.
Senator Eggleton: Let me ask Mr. Wilson's reaction on this.
The Chair: By the way, we're not getting into a debate on this. You have made your points clearly. You can make a point clearly with regard to the question.
Mr. Wilson: We don't have a definitive test for Lyme disease. In my own situation, my daughter tested negative two or three times here in Canada. We had her blood sent to three different U.S. labs. She was positive in all three different U.S. labs. The Canadian labs, by the way, buy their tests from for-profit manufacturers who are told what to put in the kit by the United States Centers for Disease Control and Prevention. The only difference between the Canadian tests and those three labs that I had my daughter's blood sent to was that the Canadian test only tested for Borrelia burgdorferi strain B31. The other labs tested for more than one strain. She tested positive on all of those. Her symptoms were classic Lyme disease. It also, unfortunately, attacked her heart, and she was left with a permanent pacemaker for the rest of her life.
The testing isn't definitive. Similarly, in the case of the death here in Canada of the young woman being treated for Lyme disease, she did not die from the antibiotics she was given; she went into anaphylactic shock. Thousands of people go into anaphylactic shock from all kinds of irritants, bee stings, peanut butter, many other things. In her case, she died because there was a nursing error involved in the therapy given to counteract the anaphylactic shock.
We have no definitive tests to rule out Lyme disease in Canada. For us to base information on the fact that we can exclusively rule out Lyme disease, it's erroneous to do so and it's harmful for all those people who are actively seeking help, getting help and getting their life back.
Senator Eggleton: I'm glad we have this bill here because this needs to get settled.
Senator Stewart Olsen: I'm basing a lot on New Brunswick because that's where I know. The particular person doing the study at Mount Allison University suggests — and she's just suggesting as she was trying to give me history and what's happening, and she doesn't say it this way; this is me putting it this way — ''If you think you've contracted Lyme disease, you should maybe get your blood taken to a vet because vets do a better Lyme disease test.'' The testing is sporadic.
There are two hospitals in Moncton. One sends them to one lab and one sends them to another. One is more comprehensive than the other and therefore offers a broader spectrum; they screen for a lot more strains of Lyme disease.
She's suggesting that we're really behind the times on this, even though we've been studying it for a long time. We're well behind. Our guidelines, for instance, are based on the American guidelines, which are quite out of date. They didn't keep up, either. I'm not saying that she's the oracle, but I am saying that she is doing this research and she believes in a science-based outcome.
From what I've read and where we're going, would you not agree — I'd like an answer from all of you — that perhaps there is work to be done and that this bill is simply answering that we need to move forward and look at a lot of different things that perhaps 10 years ago we weren't looking at?
Dr. Bowie: I hope you're not hearing from me or any of us that we believe we have all the answers. We clearly don't. Lyme is changing. More pathogens are being identified. That's really not, from our perspective, up for dispute.
We're also not proposing that these tests are ideal, but every test that's used has to be looked at in terms of how often it's correct — so-called sensitivity; how often it identifies someone who has a disease — specificity; how often someone who doesn't have disease is identified as not having disease; and then applied to the population at risk. That's just basic laboratory testing. That applies to all testing.
Whether veterinary testing is better than human testing, I don't know what they're doing there. There's an incredible amount of work going on already, which we could further in Canada. That would be great, trying to improve our understanding of diagnostic tests. This is not a static field.
Dr. Daniel Gregson, President, Association of Medical Microbiology and Infectious Diseases Canada: It's not our contention that these patients aren't sick, but we have a group of patients who have clearly laboratory-diagnosed Lyme disease, who for the most part we know how to manage very well. There are occasional patients who fail therapy, and we call those post-Lyme disease syndrome. Then there's a collection of patients, relatively few in terms of the global number of people with Lyme disease, who have symptoms compatible with Lyme disease but who have negative tests. I think the real answer is that those patients we're not sure we're missing the diagnosis or whether they have something else, and what's the best treatment for those patients.
Those patients with persistent symptoms that don't have a diagnosis need to be evaluated and managed in clinics that look at this from a scientific platform. Are we missing a diagnosis? Are there better tests out there? What's the best therapy to make these patients feel better? The only way to get there is to actually study them. That's the way we've made improvements in many of our medical conditions over the last 15 or 20 years. It's taking patients, identifying if they fit into this category and what treatments benefit them the most. Otherwise, we're just applying treatments without proof of benefit or therapies that have been proven not to work for patients, and that doesn't help them, either.
Mr. Wilson: The discussion that the bill could put on the table as far as the conference is exactly what's needed as a beginning. That's the foot in the door. We want science from all sides. In fact, one of our board members, Dr. Redwan Moqbel, before he unfortunately passed away last year, orchestrated in Canada one of the most balanced symposiums possibly in North America on Lyme disease. It took him a number of years to put this together. It was co-funded by the Winnipeg Regional Health Authority, the Province of Manitoba, the faculty of medicine where he was head of immunology at the University of Manitoba, and the federal government.
We brought the Infectious Diseases Society of America speakers to the symposium, and we brought those speakers together that contradicted some of their evidence.
It was a very good, balanced discussion, and it opened the eyes of an awful lot of the people who attended. I didn't attend it myself, but we had three of our directors in attendance. Afterwards, at the dinner, the physicians and other medical professionals who attended the conference came up to them in droves and thanked them for putting on such a good presentation.
That is exactly what we need. We need that kind of dialogue. Nobody has all the answers. Certainly the road we're going down right now is not the right road, so we've got to find what that road is. We cannot determine prevalence of this disease in the Canadian population until we have better diagnostics, both clinically and in the laboratory.
As far as what we're doing, the Canadian Lyme Disease Foundation has been working with the G. Magnotta Foundation in Ontario, and we've been working together with the senior executives of the Humber River Hospital in Toronto. For those of you who don't know, there's a brand new hospital that will be completed next fall. It's going to be one of the most high-tech, greenest hospitals in North America, perhaps the world.
In that process, we've been developing a research program involving collecting human tissue and working with Genome Canada-funded scientists to start to put together a human tissue research program. We're going to be able to analyze human tissue from people with many of the labels that we're finding that Lyme disease patients have been given over the years, including MS and chronic fatigue and fibromyalgia and lupus and all those. We can look at those tissues and run them through these next-generation sequencing products and then do the proper data analysis and find out what is going on there. Until we do that type of research, we're always going to be lacking.
During this whole process, we are going to want support from various levels of government and industry, because this is not only affecting families. This is now beginning to affect our workforce. We have many people who are out-of-doors workers now off sick, unable to work because of their disability from Lyme disease. We already have a workforce that is being stressed.
Senator Enverga: Thank you for the presentations. From my view here, I think we are heading in the right direction. We need to develop accurate testing, diagnosis and efficient treatment. I myself have a personal concern about this because I live just half a block away from a park, and I've seen a lot of deer munching on my garden.
How would you compare this to other insect-borne diseases, like malaria or even the bubonic plague, which were also insect-borne? I know different strains will get stronger and may become comparable to more deadly diseases. It has mites as one of their hosts.
Dr. Bowie: To try to answer your question as I understand it, ticks transmit many different diseases. Probably tularemia causes more deaths, which is a bacterial infection. Tick-transmitted tularemia may cause more deaths than Lyme disease in Canada, not belittling the impact of Lyme. There are many diseases. Are they going to change in numbers and impact? Yes. There are predictions that dengue viral infection, which can be very serious, occasionally life-threatening, may well end up in Canada. It's already in southern Texas. Chikungunya, which is a dengue-like illness, may well have the same things happen. We can be sure that, just like West Nile, we are going to see, with climate change and changes in human behaviours, more and more of these insect-transmitted infections, which again is in part why we support efforts that are going to try to expand looking at not just Lyme, which is an important part. All of these different diseases need to be looked at very actively so we can do prevention and education and, when people get sick, we treat them.
The Chair: We're going to come back to the bill. We're not going to deal with all the diseases in the world. Let's come back to this bill.
Dr. Gregson: To be specific, Lyme disease is the most common tick-borne disease in Canada. Do you want to put that in some perspective, or that's it?
Mr. Wilson: Earlier, people were talking about preventative measures. One thing that we've found is that if you're out of doors and you've been out in a park somewhere, yes, it's a very good thing to have a shower, but first thing is take your clothes off and throw them in the drier, not the washer. Throw them in the dryer for 15 minutes, and that heat will kill the tick every time. Throw them in the washing machine, and those little buggers will survive every time. They're tough.
Senator Enverga: I'm hoping there will be more research on the ticks themselves. Thank you.
Senator Cordy: I've received so many emails and have spoken to people who have Lyme, and the thing that came up over and over again was the testing, whether they were emails or speaking to them. I know you spoke about the for-profit labs in the U.S. where some of these people had their testing done, but I would have to say that I assume most if not all labs in the United States, because of their health care system, would be for-profit, as their hospitals would be for-profit. Perhaps I'm wrong on that.
The Chair: We're not going down that path.
Senator Cordy: No. You said, Dr. Bowie, that the late Lyme disease tests are good, but the early Lyme disease tests would not be as reliable. If it's early Lyme and you're looking at testing it, you would look at things like the bull's-eye rash. What I've heard — and I'm not a medical expert — is that not everybody has the bull's-eye rash, so what do we do about testing? Why aren't we getting better testing so that people who are being tested for Lyme would feel confident that yes, they have it, or no, they don't have it? Anything I've read about it is that early intervention and treatment is the best road to go down, but if the early diagnosis tests aren't working, what are they to do? Sit back? If it were my family, I wouldn't sit back. I would go to the United States or anywhere to have the tests done.
Dr. Bowie: Thank you. Again, I would like to reiterate really strongly that early Lyme disease is treated without need for any test at all. There is no need for reliance on the test because the vast majority of people have what we call objective clinical findings. Many will have a rash, but not all. They then, if not recognized early, may develop a different version of a rash, or may develop nerve palsy, often facial palsy where the face will droop, or cardiac problems, heart conduction or other neurologic or joint problems.
If one sees a patient or an individual who has a history of being in an area where they were in risk of coming into contact with a tick, whether or not we know they had a tick or whether or not they had a rash but had those findings, the current IDSA guidelines recommend treatment of those people without need for any test at all.
Part of the confusion in this discussion is a belief that you need a laboratory test to treat early Lyme disease, when we already know the test is usually negative early on, as it is early on testing for almost any infection. The tests are based on the development of antibody, and that takes time. You need to have the stimulus of the infection, in this case, and then the host has to respond to that, but that takes maybe weeks. A rash can develop much earlier, and that's why we treat on the basis of those or other things.
I think a lot of this discussion about bad diagnostic tests is taking the discussion out of context. I'm not saying lab tests are wonderful, but for the majority of people who have early Lyme disease, they don't need a lab test, period.
Senator Cordy: Mr. Wilson, I heard your presentation in Sherbrooke, Quebec. What's your experience with testing?
Mr. Wilson: He's correct. Early Lyme disease testing is ineffective, so it has to be based on clinical symptoms. The problem is that physicians aren't taught just how wide that spectrum of symptoms can be.
I can use my own case as an example. I did have the rash. I was one of the few. The most current research would suggest that fewer than 50 per cent of people are going to get a rash of any kind, and only 9 per cent of those are going to take this nice, identifiable bull's-eye form.
In my own situation, I did get the bull's-eye rash around my navel in early June of 1991 in Dartmouth, but it wasn't until late August on the trip across Canada that I started to have any symptoms. I guess that rash was a symptom at the time, but of course I didn't know what it meant and I had never heard of Lyme. I had no other symptoms until the trip across Canada. By then, the disease had ample time to disseminate.
By the time I got around to getting my test, it was negative. Testing at late-stage Lyme disease is not effective. It's going to be 100 per cent wrong every the time if it's incapable of detecting the genetic diversity of the type of Lyme that person may have.
We already know that the test is incapable of detecting anything a few bits away on the genetic chart from Borrelia burgdorferi, or B31. If I had Borrelia americana, for example, the late-stage test is going to be negative every time. But that's not telling me I didn't have a borreliosis. It's just telling me that I didn't fit whatever was in that test.
In relation to the dog test, the test that most veterinarians give their dogs, it was a test devised for humans. It's a C6 peptide ELISA test. We give that to humans in some provinces, and it is capable of picking up a broader spectrum of the Borrelia. Then we turn around and use a confirmatory test to justify that positive result, which also has to be positive, and that confirmatory test is only the same old Borrelia burgdorferi strain B31. You've just eradicated any benefit of having a better test. There are lots of reasons why we need this large discussion.
Senator Cordy: How much research is taking place in Canada on Lyme disease currently?
Dr. Bowie: A lot.
Senator Cordy: Is there?
Dr. Bowie: Again, I made a comment earlier, the first strain of Borrelia burgdorferi ever grown in British Columbia was grown in my lab, I think, in 1999. I have worked closely with laboratory colleagues, public health colleagues and veterinarians ever since trying to track the extent of disease, trying to raise awareness in the populous and among health care providers. In trying to have the populous take preventive measures, health care providers just say, ''Lyme is here.'' It's real. You need to try to diagnose and treat it early. The public health lab here in Ottawa is doing a wonderful job, along with the provinces, in trying to track the extent of the disease.
What we don't have, and this is part of the bill and I mentioned this in my talk, is a good handle on how much actual illness there is from Lyme disease in Canada. You heard me present. Based on the discussion here, I'd love to have that. I'd dearly love to have that.
However, given there's a huge difference of opinion in terms of whether chronic Lyme exists, I beg, if this goes through, that we track Lyme disease detected by conventional means and then the impact of Lyme disease in people who believe they have Lyme disease. It's going to be several orders of magnitude greater significance. We need to know that data, because whether they actually have Lyme disease or not those folks desperately need appropriate investigation and management and all the supports needed to make their hellish lives somehow work better.
Senator Cordy: The range is broad, as Ms. May said, and you got your Lyme in Dartmouth, which isn't particularly a rural area; it's a fairly large city. I think the general public are at least becoming more aware of it and will hopefully take precautions. Thank you.
The Chair: I've listened very carefully, because I knew there were differences of views here with regard to the issue, but I'm not actually hearing any disagreement in terms of the need for a significant increase in the amount of highly organized scientific and clinical research into this disease and bringing the modern techniques to this particular issue. What I did hear was that there is concern around the language of apparently implications in the bill.
To my reading, and no one has suggested, none of the language in the preamble is prescriptive, that is, that it leads to a requirement, if this bill is passed, that puts any particular direction at all on how medical practice will occur. That is to say there might be a difference in what you think is said there, but it's the preamble. It is not clauses of the bill, and therefore has no prescriptive impact at all.
Dr. Bowie, you apparently disagree with that?
Dr. Bowie: I just learned today, in fact, that the preamble gets removed from the bill if it is enacted. Some people can take heart in that. My concern, our concern, is that the preamble is not going to disappear from the literature. It's going to be circulating, which will have a number of implications. When it's out there, it's an incredibly damning statement against science and support for what I would call pseudoscience or factoids. That's one part.
Second, I think it is going to contribute to further difficulties that we have in terms of managing people with Lyme. The poor old person in the community who has chronic symptoms and whose disease is not diagnosed is desperately and appropriately looking for solutions. They are likely going to take that document in the back that basically says we in Canada are not identifying and not treating Lyme disease. They're going to put an additional pressure on their health practitioners to somehow adjudicate this dilemma. I think it's going to have negative impacts on the management of people in Canada.
The Chair: I really disagree with you on that, Dr. Bowie. In fact, I live in a province where Lyme disease has been around for, in this particular case, at least 20 years. We have had regions of Nova Scotia identified as having a significant risk for Lyme disease for quite a long time.
I know from clear personal experience, both with some scientific interaction and with the medical profession, that many medical practitioners in Nova Scotia until very recently denied that Lyme disease even existed in Nova Scotia.
I think the issue here is not your personal view of how society is going to look at the preamble but the guts of the bill, which are going to give us, possibly, the beginning of a national look at a disease that is recognized by you and others as important to Canadians. It's in that part of the bill that we, as a committee, have the greatest issue.
If there was something that was libellous or was going to lead to revolution or something of that nature in the preamble, that might be an issue that the committee would have to worry about. If it were prescriptive, that is, if the preamble were interpreted and indicated in the clauses of the bill based on that preamble and directed physicians in a way, that would be a very serious concern for us. But how you look at it, and how you presume somebody in society might in the age of the Web, may not be the greatest issue for us to deal with.
We have heard very clear indication that there is a need for more research into this. Indeed, one of the issues, hearing from a Lyme researcher today in a public presentation, was that, in fact, there is research. Indeed, as you have indicated, Dr. Bowie, in Canada, the Public Health Agency was recognized as one of the centres with a great deal of information and research on the impact of the disease in society, but there is not a lot of coordination among researchers across the country, specifically in the area of Lyme disease.
If we look at the issues that underlie how scientific medical research progresses in these areas, it would be hard, based on the evidence we've heard today, to conclude that this bill will damage that. Rather, this bill is promoting a direction that would move forward in this important area.
I think one of the issues, when I heard you talking about people coming in and demanding you treat them for Lyme, in my experience in my life to this point, physicians are regularly besieged with people who know they have some serious illness and want to be treated for it. When I was a young person, there were the famous pink and blue pill bottles on doctors' desks to deal with chronic hypochondria and various situations.
The issue here is that we recognize there is an important need here. We have seen that there are a wide range of variations of just one bacterium in particular. We know bacteria change regularly in their environment, which is the basis of one of the questions: Will they get worse? We know they're smart little rascals, and they have the capacity to exchange information from one another in the real world.
There is a wide range of bacteria across the world that gives rise to symptoms that have been identified as being similar to Lyme disease. It is known that various beasties carry ticks that carry various forms of Lyme-type bacteria, but some of those beasties don't move around very much. Some of them do; they move a great deal. And then there are others, like deer, that come into contact with our household pets and then with us, and that leads to the issue.
I'm going to conclude that today we have heard there is a real need for more research into this area. I thank you very much for bringing your perspectives to us, which will guide us in thinking about our conclusions.
Mr. Wilson, your testimony was very well articulated, and I'll stop there in that regard. I think the concerns have been identified. I thank you for appearing, I thank my colleagues for their questions, and I declare the meeting adjourned.
(The committee adjourned.)