Health Committee on May 29th, 2014

[The Chair, Conservative, Ben Lobb]

Good morning, ladies and gentlemen.

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

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

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

Thank you, Mr. Chair.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[The Chair, Conservative, Ben Lobb]

Thank you very much.

We'll start up our rounds of questions,

First up, we have seven minutes from Ms. Davies. Go ahead.

[Libby Davies, NDP, Vancouver East, BC]

Thank you very much, Mr. Chair.

Thank you, Ms. May, for coming today. I think your bill is very important. This has been a long-standing issue. I'm sure all of us at one time or another have heard from constituents who are suffering from Lyme disease. I know certainly, over the years, I've had many constituents come in and see me, and we've written letters, so I'm really glad to see that one of the key elements of your bill is the establishment of national guidelines.

What I heard over and over again was the incredible frustration and, literally, pain of people who thought they had Lyme disease, would go to a doctor or go to another medical practitioner, and couldn't get a diagnosis. It just seemed so incredible that in today's age people were not only suffering, but then they were having the additional suffering of not being able to know for sure what they really had, even though they suspected.

What I heard about repeatedly, and I'm just curious to know if this is what you heard as well and whether it's still as prevalent today, is the lack of testing. I don't know if it varies from province to province. I think that's one of the issues as well, that in some jurisdictions there is testing available and in other jurisdictions there isn't. So I wonder if you could just speak a little bit on that.

I agree obviously that prevention and education are very important, but it seems to me that the whole diagnosis and testing is just a critical step, so that we can get into a better treatment and management program, as you say. Have you any information to offer about diagnostic testing? For example, are there examples in Canada where there is good testing available? Is there a good case model that we could look at? I know we're not going to design the strategy, but I'm just curious to know. Are there some good practices going on in Canada?

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

Thank you.

First, I know that I should be formal and call you Ms. Davies, but Libby, I'm so grateful that one of the first letters of support was from your party, with full support for the bill. It's a long slog when you're a private member putting in a bill, hoping that it's non-partisan and that everybody will jump on board, but we all know how rare that is.

I want to say again—to the Conservative Party, to the Liberal Party, to the New Democratic Party—that I am so grateful. Thank you.

In terms of diagnostics, I'm not going to try to be a doctor about it, but there is a study that I referenced in the preamble to the bill, the Schmidt report, that was prepared at the request of the British Columbia government and published by the Provincial Health Services Authority. It talks about some of the diagnostic problems.

Part of the problem, as the letter form the Canadian Medical Association mentions, is that it looks like other things. It's quite often misdiagnosed as multiple sclerosis. This is entirely by inference, but some people have looked at the stats and said it's interesting that Canada has such a higher incidence of multiple sclerosis as compared with the U.S. We have relatively more MS than the U.S. and a lot less Lyme. The U.S. has relatively more Lyme and a lot less MS. I'm not suggesting that this is more than an interesting observation that the medical community itself should analyze, but is it possible that we've been misdiagnosing a lot of Lyme as multiple sclerosis?

For a lot of doctors, number one, when they went through medical school, Lyme was not as prevalent as it is now. They sometimes think, okay, if you don't have that classic bull's-eye rash, you don't have Lyme. Well, it turns out that, no, you can actually have been exposed to Lyme disease and never get the classic bull's-eye rash.

Some of the serological testing, the blood testing, will come back negative when in fact it's a positive. That's a problem. Even if a doctor suspects Lyme and sends the blood work away, it can come back negative and the patient can still have Lyme.

One thing I've heard is that one of the best ways to know if there is any risk that you've gotten Lyme disease is to save the tick and stuff it in a little plastic Baggie with some moist tissue so that the particular specimen is preserved. The surest way to know if you've been bitten by a tick that had the bacteria present is to have the actual tick that bit you, because they do hang on, and to get it tested. But I've talked to patients who went into doctors' office and were told “Yes: okay” before the doctors—again, because we haven't had this program of sharing best ideas—would throw it in the trash and then continue.

So your best diagnostic is often to get the tick itself analyzed. There are individual doctors who.... One of the pleas I've heard from doctors is that this is a disease where, in terms of the ability of a doctor to diagnose it in the office, sometimes the best blood work and the best additional testing will miss it. But when the patient is sitting in front of you, and you go through the checklist of symptoms, and you analyze what happened and so on, at that point you as a doctor should feel secure to say, based on the sharing of best practices, that, you know, that doctor made a diagnosis...and order a course of antibiotics.

Deciding not to do it at an early stage can lead to permanent debilitating conditions, and really, at this point, it's very, very hard to know how people are helped if it's gone to....

I should tell you that there's a fault line between the medical community and some of the Lyme disease activists. There is a community out there who could be described as Lyme disease activists. I'm not taking a position on that fault line. As I've said, I'm not a doctor. But the doctors will say “That's post-Lyme disease syndrome”, and the people who are suffering with it will say “I have chronic Lyme”. It's a very hotly contested question of what you call it at that point.

I'm not going to call it one or the other. I'm going to say that some people who have Lyme disease end up in wheelchairs for years. Whatever we call it, it would be wonderful to train some of the sharing of best practices around what to do. There are basically three different kinds of action: avoiding it through prevention; quick diagnosis when someone has first been bitten; and then that longer-term question, if somebody has been a wheelchair for years, of how you diagnose it—as Lyme or something else. That's a very hard one to diagnose.

Sorry. Did I use up all your time?

[Libby Davies, NDP, Vancouver East, BC]

It's all right.

[The Chair, Conservative, Ben Lobb]

Ms. Adams, go ahead for seven minutes.

[Eve Adams, Conservative, Mississauga—Brampton South, ON]

Thank you.

Ms. May, thank you very much for coming before us today and for bringing forward this very important bill. It has been our pleasure to work with you. You have been nothing but accommodating and kind, and really focused on making sure we act in the best interest of Canadians across the country.

I know we've shared with you some amendments that we'd like to bring forward just to make sure that the bill and the legislation would be workable. If you would be so kind....

I know you referenced a number of them in your opening statements, but just to confirm for the record, we would refer to this as a federal framework to better respect and engage the provinces.

You also note that we would have the conference take place within six months. I would ask for some flexibility there, as we don't know the legislative calender, and perhaps make that six to twelve months. We are keen to bring this forward and to act on this; we just require some flexibility to make sure we can actually hold to our word here.

Are you comfortable with those two, for instance?

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

Oh, absolutely, and I want to thank you as parliamentary secretary and through you the minister. It's so nice in Parliament to have an opportunity to work in a non-partisan, collaborative fashion. I'm very grateful.

The chair and I were talking earlier; anything we could do to speed this through...because there is a time limit here. To me, it's key to see the first conference take place before the next election, if possible, for obvious reasons: people need help.

So I'm very flexible about the time, and it's easier for me to take 12 months, if we get the bill all the way through, or whatever we can do before we break for summer.

[Eve Adams, Conservative, Mississauga—Brampton South, ON]

We're fully agreed. Hopefully we can have all-party cooperation and push this through the legislature as quickly as possible.

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

But I understand that the minister might not want to have her hands tied, because the conference does involve convening with provincial and territorial authorities.

[Eve Adams, Conservative, Mississauga—Brampton South, ON]

Yes, this is the challenge, and we genuinely do want to respect their authority in these matters.

Ms. Davies has raised a very important point, as have you, and that is that we have all, I think, received letters from and have had discussions with constituents who have faced what they believe to be Lyme disease. The constant, recurring theme is that they go to doctor after doctor. They know something is wrong with them—they're having bouts of serious arthritic pain—and doctor after doctor is misdiagnosing it.

It is something whose consequences are very heart-wrenching to see. You can have very young people afflicted by this. It is a serious issue that I think we need to bring some national awareness to, so that people speak up and even flag for their physicians the question: do you think this might conceivably be Lyme disease, and if so, then what can we do?

It is so treatable, if caught early, and the pain that people are enduring when it's not caught is terrible.

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

If I may, I'm sure this isn't only my experience; I have talked to members of Parliament on all sides of the House who have also had constituents who have gone to the U.S. for treatment. Some very prominent doctors have become noted for their expertise in both diagnosing and treating Lyme.

It is even the case that some Canadian doctors who recognize what they have in front of them and want to treat Lyme with a course of antibiotics...and sometimes it's more than one course. Treating Lyme disease requires an expertise that unfortunately many of our constituents are finding only south of the border. That of course means that only those of significant means, or those on modest means who are prepared to sacrifice a tremendous amount, go to the U.S. for treatment.

We have a wonderful health care system in Canada, and I'm hoping that with the collaboration we're seeing around this table, the medical community, working with Health Canada and the provincial departments of health and the provincial medical officers, will be able to share the information to increase the level of awareness among doctors and also increase their willingness to use what have been found to be effective treatments in other jurisdictions.

[Eve Adams, Conservative, Mississauga—Brampton South, ON]

Mr. Chair, I'd like to split my time with Mr. Lizon, so could you give a one-minute heads-up before the end of my time, please?

Ms. May, would you be so kind as to let me know the types and the names of the groups you have consulted with?

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

One of the groups, which I hope is coming to testify later today, is the Canadian Lyme foundation. But I consulted with and am very grateful for support from the College of Family Physicians of Canada, and I will be able to share their letter once I've translated it. It will come before the end of the hearing portion of this legislation.

I also have consulted with the Canadian Medical Association, as well as with many individual doctors. I have consulted and met with a clinic that deals with Lyme disease in Vancouver. Allison Bested runs it. It's called the complex chronic diseases program at the BC Women's Hospital and Health Centre. I have met with her. Her centre was created to help patients with these complex diseases. In addition to Lyme disease, that centre deals with chronic fatigue syndrome and fibromyalgia. As you can imagine, the symptoms may look similar, but the treatments are different. It's really a complex set of issues that we have here for diagnosis.

So I've talked to everybody I can talk to who has expertise in the issue.

[Eve Adams, Conservative, Mississauga—Brampton South, ON]

Thank you again for working with us in such a wonderful spirit of non-partisanship on an issue of national significance. Thank you.

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

Thank you.

[Wladyslaw Lizon, Conservative, Mississauga East—Cooksville, ON]

Thank you.

The question I want to ask is this. The bill deals with the results of the bites; however, it is caused by ticks. It's not only a Canadian problem; there is a huge problem in Europe. In the past 30 years they have noticed an extreme expansion of the tick population; therefore they are working—I don't know whether you are aware of the studies that are being done there—on finding out the reasons for the growing population, because eventually it should be stopped there, before we are affected.

Of course, your bill does not address that part of the problem, but this is a huge problem, and it should be addressed first. The work is being done internationally. Do you have any suggestions on how to approach it?

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

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

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

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

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

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

[The Chair, Conservative, Ben Lobb]

Ms. Sgro.

[Judy Sgro, Liberal, York West, ON]

Thank you very much.

I'm really happy that you have picked up this initiative. I think many of us around this table have met with family members and so on over the last several years and really heightened our awareness of the issue. I'm thrilled that you have picked it up and are running with it. My applause goes to you for doing it. There are so many things that we are inundated with here in the House, and needless to say, we can't do everything. But I guess each and every one of us, in our own way, picks up an issue and runs with it. I think it's fabulous that you've done this. I applaud you for it.

What is being done elsewhere? I mean, finally this issue, through the work of many families, is getting to the forefront here. I'm thrilled that we're all going to support this and move it through as quickly as possible. What else is happening in the U.S. or in Europe concerning the recognition that this is a serious issue that needs to be dealt with? The only way we're going to deal with it is to start getting it recognized around the world, so that they're recognizing it for what it is.

So what is being done, whether in Europe or in the U.S., on this particular issue?

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

A lot of legislation has been happening at the state level in the United States, and there is a current bill before the U.S. Congress as well. Because Lyme disease was first spotted, as everyone knows, in Lyme, Connecticut, the legislation in Connecticut is quite advanced. In 1999 they passed a limited Lyme disease insurance bill where insurers must pay. Now, of course, they have a for-profit health care system that involves getting the insurance companies to agree to the treatments. So they passed a bill to ensure that insurers must pay for 30 days of IV antibiotic treatment or 60 days of oral antibiotics.

They also passed legislation in 2009 to protect the medical community. It permits licensed physicians, who have determined the presence in patients of signs compatible with acute infection, or of what they call late-stage, which deals with this dividing line between calling it chronic and calling it post-Lyme disease, whatever they call it, to also treat people who've been basically afflicted with something quite persistent with long-term antibiotic therapy. They are protected by law. It is extraordinary that we have legislators passing laws to say that doctors are protected if they choose to do this.

Pennsylvania, Rhode Island, and California have laws, and the U.S. piece of legislation I mentioned that's currently before the Congress there is the Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2007. So that's still before their Congress.

As to the matter of what the medical community does, there's been quite a lot more progress, again, because it was more prevalent earlier in the U.S. We're catching up now, so I'm not casting blame on anyone in the Canadian medical community. But the U.S. has had a longer experience with it, so they have much more advanced prevention programs.

You approach a U.S. park, and it's just the same way as in Canada for UV awareness, and put on your sunscreen. We now have regular broadcasts on the UV index. Put on your sunscreen; it's a high UV day. When I was growing up, we never heard of such a thing, because we didn't have the same worry. The ozone layer hadn't been attacked when I was growing up. So we catch up with these things.

In the U.S. they have much better prevention signals as you go to hike in an area. Tick awareness: think about it, be careful, and check yourself after. Check your dogs after too, because that's another problem. A dog can come in the house and carry a tick in with him. So it might not even be that you've gone for a long hike; your dog might bring the tick to you.

So there's a lot more awareness programming in the U.S., and the medical community is more aware, and they do have better diagnostics in terms of the lab work that can be done. Since I'm not an expert in that field, I'm very nervous to go too far into explaining what the medical community in the States does. But they have more familiarity with it, so they've developed additional testing.

[Judy Sgro, Liberal, York West, ON]

Over and above the medical side, from the environmental side, why do we have, clearly, an increase in the amount of ticks that are out there carrying this, whether it's in Europe or in the U.S. or Canada? Is it just the fact that it's being recognized now?

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

The prevalent explanation—it's one that's been around for a long time—is the whole area of vector-borne diseases. It's a disease carried by a mosquito, tick, or whatever. Due to climate change, we will be seeing a spread of vector-borne diseases. This is not news. Goodness, when I worked in the office of the federal Minister of the Environment in 1986, I can remember the scientists at Environment Canada telling us then that the climate crisis would involve the spread of vector-borne diseases; more malaria in places that didn't used to have malaria, dengue fever in places that didn't have dengue fever. We didn't talk about Lyme disease particularly, but it falls in that category.

Now, as Mr. Lizon has suggested, maybe there's something else at work, and we need more research to understand why the ticks are spreading and why the bacteria is prevalent on different species of ticks from what we had expected. Typically we thought it was deer ticks. Clearly, jurisdictions that thought there was no such thing as Lyme disease in their jurisdiction held to that fairly firmly until the evidence made it impossible to hold to that theory. Now they have—

[Judy Sgro, Liberal, York West, ON]

In the time I have left, I want to turn it over to my colleague Mr. Hyer—since we're working so well together on this issue.