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Evidence of meeting #30 for Health in the 41st Parliament, 2nd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was tick.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Jim Wilson  President, CanLyme
Nicole Bottles  As an Individual
Christine Powell  As an Individual

9:20 a.m.

Green

Elizabeth May Green Saanich—Gulf Islands, BC

Thank you.

9:20 a.m.

Green

Bruce Hyer Green Thunder Bay—Superior North, ON

Thank you very much.

Ms. May, I would like to give you the opportunity to tell us briefly what you think the biggest obstacles are to implementing a national strategy on Lyme disease, and what you think the biggest opportunities and needs are—all in a minute or two.

9:20 a.m.

Green

Elizabeth May Green Saanich—Gulf Islands, BC

I'll be brief.

Thank you, Mr. Hyer. Speaking of cross-party cooperation, it's the first chance I get to be in the same party with somebody. It's really fun, I have to say.

The biggest barriers, I think, have been the fixed notion on the part of some that because Lyme disease wasn't prevalent 20 years ago, it's not prevalent now. I think that has largely been overcome, and again I want to give credit to the Minister of Health in 2009, who brought forward the idea of making Lyme disease a reportable illness in Canada. That was a big step, because when Health Canada says it's a reportable illness, it's very hard for anyone to say it's not real. It's a reportable illness. Health Canada recognized it in 2009. That's a big step forward.

The biggest opportunity is to convene this conference as quickly as possible. We have a moment here, and I don't want to lose that moment. We have a moment of non-partisan cooperation here in the House of Commons. We have the fact that Minister of Health Rona Ambrose is willing to move quickly on this. I don't want to speak out of turn—and the parliamentary secretary can correct me—but I have a great sense that she's personally engaged on this. We have the opportunity now to do something soon, to bring the provincial and territorial health authorities, the medical community, and the community of Lyme disease patients into the same room to share where we are on this and to figure out best practices.

As much as I've been engaged in this issue, I don't know best practices. I put this bill forward for first reading almost two years ago, and it is what it is. You have to wait until your turn comes up in the lottery. Even as much as I knew about Lyme disease before I put the bill forward for first reading, that has only confirmed for me, as I sit before you today, how much I don't know. We need to listen to the medical experts, and that's our best opportunity.

9:20 a.m.

Conservative

The Chair Conservative Ben Lobb

Okay.

Mr. Wilks, go ahead for seven minutes.

9:20 a.m.

Conservative

David Wilks Conservative Kootenay—Columbia, BC

Thank you, Chair.

Thanks, Elizabeth, for being here today. I think we can call one another by our first names here.

I'll be sharing my time with Mr. Young.

I just wanted to say that I know a young man in my riding of Kootenay—Columbia, Kurtis Schwindt, and his family as well—I have no problem saying his name—who struggled with Lyme disease in his early twenties and had to go to the United States finally to resolve his issue. One of his things was that he ended up with a whole bunch of his peers saying he was just a lazy young kid, but the fact of the matter is he couldn't stay awake. That was part of the problem. He would sleep for days, just days, and they could never figure out what the problem was. Luckily he has been able to move forward. He still struggles somewhat with it.

I'm very glad to see this go forward. I am curious about something. I'll ask this and then I'll turn it over to Mr. Young. I'm wondering if you can provide some insight into the challenges that Lyme disease poses to Canadians, and how this legislation would help to address those challenges.

I know we're repeating a bit here, but I think it's important for you to get your message across.

Then I'll turn it over to Mr. Young.

9:25 a.m.

Green

Elizabeth May Green Saanich—Gulf Islands, BC

Thank you very much, Dave. I appreciate it enormously as well as the story you shared of your young constituent. I'm looking around to see if the witness you'll hear later this morning is here yet. Nicole Bottles lives right near my riding and is an amazing young woman.

Part of the story of how it's afflicted young people is that not only is it physically debilitating if not diagnosed, but the ability to study, to have a textbook, to be in a school.... One of the symptoms that seems to occur is not only being exhausted but also having a hard time holding a thought from moment to moment. That's very difficult, because even if it's physically debilitating, young people can go to school in wheelchairs, but when you're in a wheelchair and you can't concentrate, then you're really losing your educational opportunities as well as having a lot of quality-of-life issues.

I'm sorry, Dave. I started thinking about young patients, and I lost the question you wanted me to answer.

9:25 a.m.

Conservative

David Wilks Conservative Kootenay—Columbia, BC

You can carry on with that as well, or I can just turn it over to Mr. Young. My question was with regard to the challenges that Lyme disease poses to Canadians and how the legislation will help.

9:25 a.m.

Green

Elizabeth May Green Saanich—Gulf Islands, BC

Right.

Of course the legislation will be enormously helpful. I think it was very kind of Irwin Cotler to make this point in his speech at second reading. He talked about the fact his own daughter has Lyme disease, and he said that even having the debates we're having in the House has already helped increase awareness. That's good, but I want to get the bill passed.

When we have a federal framework, we'll be identifying for all jurisdictions how to better prevent it through more awareness. We'll identify how to better diagnose it through doctor-to-doctor sharing of best practices so that when a patient shows up in a doctor's office, the doctor will be looking for symptoms and asking if this could be Lyme disease. Once a quick diagnosis is made, we'll know how to treat it and therefore have better treatment.

I didn't touch on this part of the bill, but I should mention the part about collecting information. Paragraph 3(a) of the bill calls for a surveillance program, so the data will be collected by the Public Health Agency. We'll track incidence rates and also the economic costs of Lyme disease. That's going to be very useful information to justify the programs going forward.

9:25 a.m.

Conservative

The Chair Conservative Ben Lobb

Thank you.

Mr. Young.

9:25 a.m.

Conservative

Terence Young Conservative Oakville, ON

Thank you.

Congratulations, Madam May, on this initiative. I was pleased to second it in the House of Commons, subject to some amendments, which we've discussed today and previously.

When I first got involved in the subject, I was also pleased to see that our government has been active on the file since 2006. The Public Health Agency of Canada is working to support the provinces and territories. Our government's invested $4.5 million to date for research related to Lyme disease. They made it a reportable disease as well, so they're tracking it. The improved surveillance is going to be helpful. We've actively engaged with provincial and territorial partners in monitoring the spread and development of the disease.

I first became aware of the disease, and we've discussed this, when my friend Janet Mitchell, who's a former Oakville town councillor, had Lyme disease. She was misdiagnosed for years. They told her she had MS and would be in a wheelchair for life. She didn't believe them and did her own homework. She got on the Internet and she did her own research.

They gave her the ELISA test in Ontario, which is a failure for Ontario patients. It's not reliable. She and her husband went down to the States. She paid for it herself and she got the Western blot test, which proved she had Lyme disease. Then she took a nine-month course of antibiotics. The bacteria is no longer in her system; she's pursuing one other possibility.

But the ELISA test is not reliable. This is a case where the provinces have let down Canadians, the health care system, and the doctors. The neurologists were saying she couldn't have Lyme disease, we don't have Lyme disease in Canada, as if ticks don't go on deer and birds and fly across the international borders.

But it's happening now. I did some research recently, just two weeks ago. I called around the GTA to find out—I looked on the Internet—where someone can get this reliable test, this Western blot test, in Canada. There was one naturopath's office in Thornhill, Ontario. I left a message to learn more and never got a call back. I guess they're swamped with calls. Two days later they finally called back and said they were only doing it on Monday and they had to get the doctor's permission, etc. There are two offices of naturopaths in Ottawa where someone can go and get this reliable Western blot test.

That is not good health care. When you think the provinces will have to pay for a nine-month course of antibiotics, they're willing to pay that much money, but not willing to pay the money to get a reliable test where a patient might only need a 10-day course of antibiotics. It just doesn't make sense.

Could you please tell the committee what you've heard from the medical profession on your bill and if you've heard any similar comments from them?

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

Green

Elizabeth May Green Saanich—Gulf Islands, BC

Thank you so much for the question.

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

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

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

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

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

9:30 a.m.

Conservative

The Chair Conservative Ben Lobb

Thank you very much.

Ms. Mathyssen.

9:30 a.m.

NDP

Irene Mathyssen NDP London—Fanshawe, ON

Thank you, Mr. Chair. I will be sharing my time with Ms. Davies.

Thank you, Ms. May. I'm very interested in all this work you have done. I did a little background reading and you talked about there being a new awareness about the spread of the disease, yet in the bill you make mention of B.C. undertaking active testing. Is B.C. the only province that is being so active, or are other provinces beginning to understand the importance?

9:30 a.m.

Green

Elizabeth May Green Saanich—Gulf Islands, BC

Thank you.

I don't want to overstate the extent of British Columbia's ability to diagnose, either. There is still a lot of patients who go to their doctors in British Columbia and, looking around the table, there are three of us from British Columbia here, and unless James or Dave want to jump in and suggest otherwise, I'm still hearing from people who've gone to a doctor who hasn't recognized it.

What is unusual is that the B.C. government, through the Provincial Health Services Authority, commissioned a major study on chronic Lyme disease in British Columbia, authored by Brian Schmidt. It's from May 2010 and is a very useful summary of the challenges of the illness and the difficulties in diagnosing it properly. The Provincial Health Officer for Public Health in British Columbia has also stated his support for this bill, because it takes a constructive approach going forward to work together to develop best practices.

Right now there are pockets across Canada. Dr. Murakami in Vancouver, for instance, is one of the people who is acknowledged as a Lyme disease expert. There is a number of doctors across Canada, but they quite often have to send the samples for testing to labs in the United States.

9:35 a.m.

NDP

Irene Mathyssen NDP London—Fanshawe, ON

I was reading an article about the Rossana Magnotta foundation. Apparently, her husband suffered dreadfully for years, wasn't diagnosed until later in his life, and he actually succumbed to the ravages on his health. Have you been in touch with the foundation, and what kind of progress are they making?

9:35 a.m.

Green

Elizabeth May Green Saanich—Gulf Islands, BC

Jim Wilson from the Canadian Lyme Foundation is here as well, and I know they work quite closely. They were represented at a recent Lyme disease awareness event that took place in Victoria. While very uncommon, it's not unknown for someone to die of Lyme disease, and in that case Mr. Magnotta did. He had been a very successful businessman and a very important part of the community. Tragic events like that help us focus on exactly how critical it is that we get better awareness, better prevention, treatment, and understanding of the illness.

I skipped over something Mr. Young said that I should have drawn attention to. I don't think a lot of Canadians know about the decision of Health Canada; I'm not sure when it started, but there's been almost $5 million committed to research in Lyme disease. That's really encouraging. I think with the private foundation community and the public health authorities and Health Canada working together, one of the key pieces—I obviously couldn't put it in the bill, because I can't attach any money commitments to a private member's bill—is that we really do need to do more research into what to do to assist people who, either through misdiagnosis or through failure themselves to pursue diagnosis while thinking they're tired all the time, are in wheelchairs: they really need advanced funding for research to find a way to get back to health, after having been suffering from Lyme for some time.

That's a piece where the foundation work is so critical.

9:35 a.m.

NDP

Libby Davies NDP Vancouver East, BC

I'd like to come back to the question of the testing, because I think it's so critical. You said a number of times that it's hard to make a diagnosis, but I kind of wonder about that. It could be partly, as you say, lack of awareness on the part of medical practitioners, but there is a test available. We heard Mr. Young's story about its availability in very few places. It seems to me that's more the issue. Unfortunately, this is quite a familiar story that we hear.

There are incredible technologies available in Canada for health care, but it's accessibility, so I think it's linked very much to the need for national guidelines and a national treatment program. It seems so inequitable that in some places you might be able to get the test, if you know where to look, and in other places you don't have a hope in Hell, because the right one doesn't exist.

I'll put this question as well to the foundation. I think they're here on Tuesday. But I wonder if you have more information about that. It's not that the diagnosis is hard, it's that people don't have access to the testing and they're not being referred to it. Is that a more accurate description?

9:35 a.m.

Green

Elizabeth May Green Saanich—Gulf Islands, BC

I think it's actually true that it is hard to diagnose, because it presents with a cluster of symptoms that can be other things.

9:35 a.m.

NDP

Libby Davies NDP Vancouver East, BC

But wouldn't a physician then say, okay, you might have this; let's go test you? It could be fairly straightforward.

9:35 a.m.

Green

Elizabeth May Green Saanich—Gulf Islands, BC

That's right, but as I said, some of the lab blood tests that people thought were reliable could come back negative when a person actually has Lyme disease.

One of the doctors I've spoken with, who was actually copied on a letter from the Canadian Medical Association, Dr. Edward Carmode, is very clear that we ought to be able to trust that a doctor, looking at a patient in his office, can make a clinical diagnosis for himself or herself. With the right set of indicators, they could make that diagnosis and order a course of antibiotics, particularly when it's timely and it matters to move quickly.

I'm not going to jump into this discussion and suggest what doctors should or shouldn't do. I think the medical community is going to share its best information through the process of developing this federal framework so that everybody knows the guidelines and how to move forward. No doubt we could develop better tests than what we now have.

We need to be able to be sure, as you say, that there is not this terrible inequity. If somebody is feeling ill and they don't think about Lyme disease when they go into their doctor's office, it's the luck of the draw that the doctor is going to think of it. Sometimes the patient can be carrying a Baggie with a tick in it, and it's the luck of the draw whether they get a doctor who says, “Oh, how smart of you to bring me the tick, I'll have it analyzed to see if it has the bacteria”, or he throws it in the trash and says, “I think you're fine. I think you're down with a touch of the flu and you'll be fine in a few days.”

Right now, it's extremely spotty to find a clinician who knows what to look for, to find a lab that can do the test, and to get treatment quickly. So many people have to go to the U.S., which is really a harsh indication that our.... I mean, I believe in our health care system and I think we have a wonderful health care system, but this is an area that needs a lot of improvement because of the spread of this disease.

9:40 a.m.

Conservative

The Chair Conservative Ben Lobb

For the last few minutes, do we have Mr. Lunney, or is it Mr. Young?

9:40 a.m.

Conservative

Terence Young Conservative Oakville, ON

I'd like to make a comment briefly.

9:40 a.m.

Conservative

James Lunney Conservative Nanaimo—Alberni, BC

We can split the time.

9:40 a.m.

Conservative

Terence Young Conservative Oakville, ON

Thank you.

I previously mentioned my constituent Janet Mitchell, who refused to believe her doctor that she didn't have Lyme disease. But she's a critical person. She's a former councillor. She's well read. She's intelligent. She has resolve.

I guess there is a phenomenon happening that I would call “empowered” patients—patients who challenge their doctors. Most people are afraid to challenge their doctors. On the one hand, we have doctors who are waiting for guidelines and are throwing away ticks that may hold a deadly poisonous bacteria and not understanding, and then we have patients who go on the Internet and diagnose themselves and pursue treatments on their own.

I do want to get on the record that the test I mentioned, the Western blot test, is only provided in southern Ontario, to my knowledge, by a company called IGeneX, out of California. It's available through some naturopathic offices. I want to get that on the record for anybody who is reading the transcript of this hearing.

Thank you.

Dr. Lunney.

9:40 a.m.

Conservative

James Lunney Conservative Nanaimo—Alberni, BC

Thanks very much, Elizabeth, for bringing this forward to us. It's a growing problem, and a troubling one. I appreciate that you covered very well in your opening remarks about the need for prevention, for quick diagnosis, and then sharing best practices.

In terms of looking at the diagnostic tests, I've been trying to get a handle on this. We haven't had experts here to advise us. It's a little unusual to start a study without expert opinion in front of us.

But this ELISA test, this enzyme-linked immunosorbent test, is to detect antibodies. The Western blot test is also to identify antibodies reacting to certain proteins on the organism. As well, there is a polymerase chain reaction test.

It's a spirochete that we're talking about here, which causes other infections as well. This particular one is very problematic, tick-borne, but as you mentioned it also can be carried by dogs, white-footed mice, horses, and it may be that as ticks are moving around, other animals are carrying these ticks as well. We're in a farm area on the island. It may be that we have other animal vectors that we haven't been cluing in on.

I think we need to get a handle on best practices, and I appreciate that you've brought it forward for discussion. We need to find the appropriate diagnostic tests because the spirochete can be hiding in various tissues and toxins. It seems to be a bit of a masker and impairs, binding with other proteins in the tick, causing immunosuppression and delayed response. We need to get a better handle on exactly what the mechanisms are.

I hope we're all going to learn more as we work through the process and as we get the Lyme society speaking, and experts appearing before committee as we have a look at it.

Elizabeth, thank you for bringing it forward. I appreciate that we have an opportunity to learn something and to help advance the treatment of a troubling syndrome that's developing.