Health Committee on June 8th, 2017

[Colin Carrie, Conservative, Oshawa, ON]

Okay. Maybe we can get back to you on that.

My next question is for Dr. Hawkins.

First of all, I just want to say that when we are looking at the original Bill C-442 around the table here, I am very proud to have worked.... To get a private member's bill passed by a government is a great feat, actually, but I think the original intent was to have a framework come out that was going to make Canada's the most up to date one around the world.

From the evidence I've been hearing in the last couple of days, as far as guidelines, diagnostics, and treatments are concerned, it seems that our latest framework is failing in that regard. The bill did call for treatment. Dr. Njoo said we should be focusing primarily on diagnostics and treatments. I do realize there are jurisdictional issues there, but I'm worried that we didn't quite get it right.

Dr. Hawkins, the framework highlights the current challenges associated with Lyme disease testing; however, it doesn't actually offer any recommendations for replacing or repealing the current methods being used. I know you commented earlier today, but could you give us some specific guidelines? What changes do you think should be made, and what are the consequences of continuing to use these old methods?

[Dr. Ralph Hawkins]

Thank you, Dr. Carrie.

I agree with you. I think the framework has missed the mark. I think the reason it has missed the mark is that there are people within the mechanism of health delivery in Canada who do not want to cut the umbilical cord from the CDC in Atlanta. You've heard answers this morning pointing to there being a reluctance to deviate from what the CDC has put forward for this or that or the other thing.

Mr. Oliver was on the CDC website earlier. I would ask him, just as an example, to look at the case definitions for Lyme disease and then look at the Canadian case definitions. There's a deviation. The Canadian case definitions for Lyme disease are not as encompassing as the CDC's guidelines. That is something that would pose a question, in my mind, to the Public Health Agency.

To get on with testing, the testing that's being done right now is surveillance testing, and surveillance testing is biased in favour of being specific. That means when they say a positive test is found, they want to make absolutely sure that it's a positive test, and they're willing to not count every case for the sake of the specificity of the test. On the other hand, a front-line provider such as Liz or me is not interested in that approach. We're interested in sensitivity of diagnosis for our patients.

There's a very simple way of improving the sensitivity of diagnosis. Dr. Njoo will be an expert in this, because this is basic epidemiology. It has to do with parallel testing rather than in-series testing. Parallel testing will increase the sensitivity of what you do, and the parallel testing that we could be doing in Canada today would be to do the C6 assay that every province is already doing and simultaneously do the ELISpot.

If that approach is used, the sensitivity we would expect to see would be in the 96% range, and the specificity would be in the 93% range. This is very strong clinically. This would give us positive predictive values greater than 10 and negative predictive values less than 0.1. But the mechanism that runs medicine in Canada isn't prepared to be innovative.

[Colin Carrie, Conservative, Oshawa, ON]

Thank you very much for that positive suggestion, because that's what we're really looking for: to improve things for people who are suffering with Lyme disease.

The government claims that the framework is based on the best available research evidence. Would you agree with that statement, or do you feel a lot of the cutting-edge research introduced at the conference has been completely ignored?

[Dr. Ralph Hawkins]

I would point to the researchers' getting together at Queen's University two weeks before the framework conference to have a closed meeting, by invitation only, to set up their research network as being an example of how these evidence-based expert types of things come forward. They have a closed group, talk to each other, and they reinforce each other's opinions.

[Colin Carrie, Conservative, Oshawa, ON]

Okay, that—

[The Chair, Liberal, Bill Casey]

Time's up, Dr. Carrie.

Now we go to Mr. Kang.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

Thank you, Mr. Chair.

I'd like to thank all the witnesses for their enlightening testimony.

My question is for Dr. Njoo.

When a person falls sick, they start to get second opinions and they start to talk about what options they have. Does the federal framework on Lyme disease address any treatment options?

[Dr. Howard Njoo]

No, the federal framework acknowledges that the development of actual treatment options is best undertaken by the professional organizations for the front-line practitioners, and it respects that expertise.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

It doesn't fall under the responsibility, then, of the federal framework.

[Dr. Howard Njoo]

Yes, another point is that the actual delivery of health care services and public health services is a provincial and territorial jurisdiction.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

I was thinking about a vaccination. We have a flu vaccine. Is there any vaccine being developed? Is the Government of Canada supporting the development of a vaccine for Lyme disease, or is something in the works?

[Dr. Howard Njoo]

For the Government of Canada specifically, we don't have any ongoing research into a vaccine for Lyme disease. I'm not personally aware, but I'm sure that probably researchers around the world are looking at developing a Lyme disease vaccine.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

Okay.

My next question is for Margaret. I want to put it on the record that my son works for the Canadian Blood Services in Calgary. You were talking about testing blood for Lyme. Can you describe any risks that Lyme disease or other tick-related infections may pose to the blood supply? Is there any chance that Lyme disease in affected donors could pose any risk to the blood supply?

[Dr. Margaret Fearon]

So far, there is no evidence that transfusion transmission to recipients occurs, even from people who are known to be infected with Lyme disease, so the answer is, there is no evidence at this point.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

Then we don't have to worry about addressing any risks? Do you have something to fall back on if there is a risk?

[Dr. Margaret Fearon]

There are several ways to deal with emerging infectious disease risks. I think the way of the future for most blood operators will be the implementation of pathogen inactivation, as I mentioned before. This is a way of treating blood products to kill infectious agents.

As I mentioned, there are technologies, one already approved by Health Canada and one under review, that will allow pathogen inactivation for two blood components, which are platelets and plasma, and a technology for the treatment of red blood cells that is still under development.

I think that rather than looking at implementing a test every time there is a new disease that comes along, it makes a lot of sense to move towards this kind of technology.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

Thank you.

[The Chair, Liberal, Bill Casey]

You have another minute.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

I have another question for Dr. Njoo.

Why aren't the Natural Sciences and Engineering Research Council of Canada and the Social Sciences and Humanities Research Council partners in the framework? Are they or are they not?

[Dr. Howard Njoo]

Other federal departments, including NSERC, were involved and engaged in the development of the framework, and certainly as we move forward with the research agenda as the questions get further developed, I'm sure we'll engage with them as appropriate.

[Darshan Singh Kang, Liberal, Calgary Skyview, AB]

There were a lot of issues around the framework, including that the patients' input was not included in the framework.

My question is for Dr. Hawkins. What more could be done in order to make this framework inclusive?

[Dr. Ralph Hawkins]

Thank you very much, Mr. Kang.

I think that, moving forward, this framework needs to be supervised by an oversight committee. I would propose that an oversight committee similar to what has been put forward by legislation in Congress would be an excellent idea, with equal representation of patients and advocates, front-line practitioners, researchers, parliamentarians, and the funding agencies. I think that type of an oversight committee for Lyme disease research will give us policy direction, will give us supervision, and will give us accountability.

Thank you.

[The Chair, Liberal, Bill Casey]

Thank you. The time is up.

Ms. Harder.

[Rachael Thomas, Conservative, Lethbridge, AB]

Thank you very much.

My first question is for Dr. Njoo. One of the things we've heard from the witnesses, and which we've alluded to already today, is that at our last meeting, when we heard from the patients, the people who have suffered from Lyme disease, they did not feel that they were made equal partners in the development of this framework. That was one of the things they were calling for.

I give that quite a bit of weight, coming from them. My question for you would be this: how could we further expand the framework in order to make them equal partners? In particular, how do we make them equal partners in speaking to testing, to diagnosis, and to treatment?

Going forward, it would be my hope that we would strengthen this framework. In so doing, I believe that these individuals need to be called to the table and made equal partners. What would that look like going forward?

[Dr. Howard Njoo]

Thank you very much for your question.

Certainly, we believe that the patients you mention were obviously engaged. They were participating at the conference. If you look at the framework, you see that the actual proceedings of that conference are, in a sense, attached to the framework. My sense is that a lot of submissions, I think over 400 submissions and comments, were received from patients—