Evidence of meeting #59 for Health in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was lyme.
A video is available from Parliament.
NDP
Don Davies NDP Vancouver Kingsway, BC
Thank you.
Second, an undercurrent of this entire discussion is that there appears to be some controversy. Dr. Lloyd, you mentioned that there are divergent opinions, and your testimony was that we need a dialogue. Does the framework provide an adequate means to facilitate that essential dialogue, in your view?
Professor, Mount Allison University, As an Individual
No, it doesn't. It provides no opportunity for input, or even for updating the science. We need a way of feeding in new scientific discoveries as they happen, and they're happening very rapidly. There is, essentially, no dialogue. There's no way to make this a living document.
NDP
Don Davies NDP Vancouver Kingsway, BC
My last question is for you, Dr. Lloyd.
I really like this quote by former U.S. Vice-President Joe Biden: “Don't tell me your values. Show me your budget, and I'll tell you your values.” I want to zero in on the $4 million that this framework proposes to invest in research, and get your view on whether that is sufficient in order to do the research necessary to attack this condition.
Professor, Mount Allison University, As an Individual
No scientist is ever going to say, “That's enough money”, but perhaps I'll—
Professor, Mount Allison University, As an Individual
I might actually break tradition there. I would say that it depends on how you are going to use the money. If it's more of the same, I don't think that's a very good use of the budget whatsoever.
Canadian scientists are very good at scraping along with relatively little money, although we'd always like more, of course. What's important here is to have that funding distributed in a transparent and peer-reviewed process. The framework already identifies policy priorities, which essentially have tagged specific individuals and specific projects, and that's premature. It is premature for policy-makers to say that this is good science and that is bad science. The expertise wasn't in the room when this framework was drafted.
There needs to be a broader call, directed toward the science community as well as the medical community, saying, “What can you do? We have a pot of $4 million. Tell us what's going to help Canadians.” Then send that out to a scientific peer review.
NDP
Don Davies NDP Vancouver Kingsway, BC
Thank you.
Ms. Faber, you testified very strongly about your struggle to get the medical establishment to listen to—or, frankly, ignore—your view that Lyme disease can be passed on congenitally. I wasn't quite clear on this. Are you saying that the connection with congenital transmission is present in the literature but doctors just aren't aware, or that it is not present in the literature when it exists and it should be in the literature?
Lyme Disease Advocate and Patient, As an Individual
It is present in the literature. That is why I am going to leave this textbook, Remington and Klein's Infectious Diseases of the Fetus and Newborn Infant, from 2001.
I am just going to read one little paragraph from chapter 11:
It is uncertain how many episodes of gestational toxemia, spontaneous miscarriage, spontaneous abortion, stillbirth, culture-negative neonatal sepsis, failure to thrive, developmental delay, congenital heart disease, or sudden infant death syndrome may be due to unrecognized gestational Lyme borreliosis. ... Determination of true risk to the fetus and infant of maternal gestational Lyme disease requires prospective studies of all pregnancy outcomes of gestational Lyme disease, long-term follow-up of live-born products of these pregnancies, and improved diagnosis of Lyme disease in affected fetuses, placentas, and infants.
This chapter has over 888 references. It has been well cited.
We met with public health about a month ago and shared this textbook with them. When I met with them yesterday and asked them if they had had an opportunity to read it, the answer was no. I don't know if they knew it existed. Yesterday, when we went to them, they still did not have a copy of this textbook. I truly hope that, now that they have this resource in front of them, they will be able to understand that there is clear, defined information that points to congenital transmission.
Liberal
Darshan Singh Kang Liberal Calgary Skyview, AB
Thank you, Mr. Chair.
I thank all the witnesses for sharing their personal stories.
My questions are for Dr. Vett Lloyd.
In the public forum, there were 500 participants from across Canada. They participated over three days, and there were 100 speakers. They shared their personal experiences, either in person or online. Speakers included patients, their families, caregivers, and health care professionals.
Doctor, you keep saying that this framework is not a living document and that there is something missing from the patients' input, but you are not being specific about what is missing in that framework. Could you please make that clear?
Professor, Mount Allison University, As an Individual
The conference brought together patients and scientists and medical professionals. At the end of the conference, there was a conference summary. If you go to the online version of the framework it's hyperlinked there. The summary couldn't capture all of those testimonials, but key reoccurring points were picked out. If you check those reoccurring points, few to none of them show up in the document, and others have just been put in. I presented in the surveillance section because I do ticks. One example I gave was that everyone agreed that showing surveillance maps with a dot saying there would be ticks here is not meaningful because ticks are moved around by wildlife such as deer and birds and mice, and there are not a lot of places in Canada where there are no deer, birds, and mice.
We all agreed that the way to do it is to show broader sections of Canada as being high risk or low risk, but there is actually no area that is zero risk. That didn't show up. That's one very small example, but in many ways the conference summary should have been the framework. It did a phenomenal job of capturing not only the patient voice, which is critical, but also the current science. There was current science presented on the fact that the bacteria actually survived the standard short-term antibiotic treatment, which is clinically critical, because if you under-treat the disease, then you're asking for antibiotic resistance, and this disease is bad enough as it is. The prospect of having an antibiotic-resistant Lyme disease is horrifying.
Professor, Mount Allison University, As an Individual
I can keep going, but I don't think we want to do that.
Liberal
Darshan Singh Kang Liberal Calgary Skyview, AB
No, I don't want you to keep going.
In the surveillance framework pillar, it says it will develop a national tick-borne surveillance system for Lyme disease and other possible co-infections. Don't you think what you just said will be covered in that?
Professor, Mount Allison University, As an Individual
It will not unless.... We already have a surveillance system. We have to fix it and bring together all the people who think of different ways to do surveillance, as opposed to just doing more of the same thing.
Liberal
Darshan Singh Kang Liberal Calgary Skyview, AB
Okay, you just assume that it will be the same thing. It will not be anything different. Is that your assertion about this, or is it that of the scientific community as a whole?
Professor, Mount Allison University, As an Individual
If it were to be different, I would think that would be indicated in the document by saying that this is something different we can do to help Canadians as opposed to making a general statement that we'll do something.
Liberal
Darshan Singh Kang Liberal Calgary Skyview, AB
Thank you.
My next question is for Janet Sperling. This is about the framework as well. This is about the concerns about negative testing. Concerns about the false negative testing, you also said, have led some patients to seek private testing. The development and availability of improved laboratory testing options may reduce the current practice of some patients seeking testing in private, for-profit laboratories that may not be using standardized testing.
What is the rate of false negative test results for Lyme results?
Board Member, Canadian Lyme Disease Foundation
We have no idea. That's the problem. I can't give you an idea. I know that we do have a lot of false negatives. I don't know how many of these people actually have one of the co-infections. It's possible, and this is what my research is, to look at all the bacteria in the tick, and when it comes to surveillance, I think that would be a great thing to do. We could find out that, for example, in Nova Scotia, there is a lot of Borrelia burgdorferi and maybe a lot of Rickettsia, whereas in Ontario it's a lot of Borrelia burgdorferi and Enterobacteriaceae, something like that, and we can march across.
As far as the false negatives go, one of the other questions is how are you defining Lyme disease? If you are defining it as two-tier positive, then we have a lot of problems here. We need to have a better grasp of tick-borne illnesses, of which Lyme disease is one.
So I know it's a high rate, but I don't know what it is. I can't give you a number.
Liberal
Darshan Singh Kang Liberal Calgary Skyview, AB
Do you have any data on how often individuals seek prior testing and how many are left in Canada?
Board Member, Canadian Lyme Disease Foundation
Virtually everybody contacts CanLyme, and has gone through the current medical system. They have a real reason for believing they have Lyme disease. They seek private testing, sometimes in the U.S. and sometimes in Europe. They haven't got any better answer.
Liberal
Darshan Singh Kang Liberal Calgary Skyview, AB
How are the tests used in private testing facilities? Do they differ from those used by other health care providers?
Board Member, Canadian Lyme Disease Foundation
In particular, the most famous one releases the banding pattern of the Western blot. That's the big thing it does. It also looks at two strains of Lyme disease at the same time. Here in Canada we test for one strain and the big American lab tests for one on either and then reads the blot through it so you can get more information from it.
Liberal
The Chair Liberal Bill Casey
Thank you.
We're on our five-minute questions now.
Dr. Carrie, go ahead.
Conservative
Colin Carrie Conservative Oshawa, ON
Thank you very much, Mr. Chair.
I'd like to thank the witnesses for being here today.
Under the the proposed framework, do you feel as if your issues as a patient have been addressed? If not, what exactly do you think this framework is missing?
Could you elaborate, please?