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.

On the agenda

MPs speaking

Also speaking

Janet Sperling  Board Member, Canadian Lyme Disease Foundation
Sue Faber  Lyme Disease Advocate and Patient, As an Individual
Jennifer Kravis  Lyme Disease Advocate and Patient, As an Individual
Vett Lloyd  Professor, Mount Allison University, As an Individual

11:55 a.m.

Lyme Disease Advocate and Patient, As an Individual

Sue Faber

I didn't, no.

11:55 a.m.

Board Member, Canadian Lyme Disease Foundation

11:55 a.m.

Professor, Mount Allison University, As an Individual

11:55 a.m.

Conservative

Len Webber Conservative Calgary Confederation, AB

During this conference, of course, many issues were brought up, and that's what developed the framework that we have in front of us today. My question is, then, was the issue of congenital transmission raised during this consultation period, this conference?

11:55 a.m.

Lyme Disease Advocate and Patient, As an Individual

11:55 a.m.

Conservative

Len Webber Conservative Calgary Confederation, AB

It was brought up. You talked about it.

Was the issue of transmission through blood talked about and discussed at this conference?

11:55 a.m.

Lyme Disease Advocate and Patient, As an Individual

Jennifer Kravis

Yes, it was certainly raised as an issue.

11:55 a.m.

Conservative

Len Webber Conservative Calgary Confederation, AB

What about Lyme disease vaccines? Were vaccines discussed, talked about?

11:55 a.m.

A voice

Yes.

11:55 a.m.

Conservative

Len Webber Conservative Calgary Confederation, AB

That's disappointing because I don't see it in this document, this framework, other than on page 31, a brief bullet point under Research; one topic is human-to-human transmission: congenital, breast milk, sexual, blood supply, organ donation. To me, that is quite disappointing because this is a major public health concern.

What I'd like to ask Dr. Lloyd is this. With your scientific background, do you believe there can be human-to-human transmission of Lyme through the blood supply?

11:55 a.m.

Professor, Mount Allison University, As an Individual

Dr. Vett Lloyd

Well, I'll answer that indirectly. When we do work with mice, the way we produce infected mice is that we innoculate them with blood, usually from another mouse. That's mice, not humans, but we all have blood and it works the same way.

There is no reason it would not happen. There is documentation in the literature saying that it does happen.

11:55 a.m.

Conservative

Len Webber Conservative Calgary Confederation, AB

Okay.

11:55 a.m.

Professor, Mount Allison University, As an Individual

11:55 a.m.

Conservative

Len Webber Conservative Calgary Confederation, AB

Yes, I believe so as well, from the discussions I've had in the past with scientists, doctors, and such.

But we aren't doing any screening here in our blood supply and this is certainly going to be a question I'm going to ask on Thursday with Canadian Blood Services. I just wanted to get your thoughts on that.

Also, with regard to infected mothers passing on Lyme disease to their children, I have some notes here. It is a travesty, and I'm very sorry to hear that it has occurred in both your families, Sue and Jennifer.

I understand there is no science to prove that it is sexually transmitted. Perhaps I'll ask this as well, Dr. Lloyd. Can Lyme disease or any of its other types of relatives be transmitted through sexual activity?

11:55 a.m.

Professor, Mount Allison University, As an Individual

Dr. Vett Lloyd

There is science to say that it can be found in human genital secretions. It has been shown to be sexually transmitted in a number of different animals—dogs, horses for some reason, cats, and mice. There are also studies that failed to document it, but I think at this point the precautionary principle would be to say, yes, we can see it happens in animals and it looks as if it could happen in humans.

So yes, let's not take a risk.

11:55 a.m.

Conservative

Len Webber Conservative Calgary Confederation, AB

Absolutely, it's certainly something I will bring up with Canadian Blood Services. I think it's a concerning issue and we need to address this.

If I go out into the mountains with my grandkids, my future grandkids, and they are bitten by a tick, are you saying that the treatment is going to be difficult for me to go to a doctor to say, “Look, this child has been bitten by a tick. What do I do now?” Is there a treatment for my grandchild?

From your experience, Jennifer and Sue, it sounds to me as if the treatment does not work well here in Canada. Can you maybe elaborate on that?

11:55 a.m.

Lyme Disease Advocate and Patient, As an Individual

Sue Faber

Actually, if you have a child or a grandchild who does get bitten by a tick, there is treatment and the key is that it needs to be early treatment. That child needs to go to the emergency room or to your family doctor and whether they have a tick attachment still on them doesn't matter. The point is that the child has been bitten, may or may not have a rash, but we need to treat that child. We cannot watch and wait. We cannot.

Noon

Conservative

Len Webber Conservative Calgary Confederation, AB

So it's the diagnosis first to indicate—

Noon

Lyme Disease Advocate and Patient, As an Individual

Sue Faber

It's the diagnosis, so our clinicians must be aware. There are guidelines, currently available to our clinicians, that set out proper treatment for individuals, whether they are children or adults.

The problem is that many times, from many stories we have heard, children are actually presenting to an emergency room with a classic EM rash. By the way, an EM rash does not have to be a bull's eye. It doesn't have to look like a perfect target.

These children are presenting and the doctor is saying, “Well, did you pick off a tick? No? Well, let's just watch and wait.” And that watching and waiting could make the difference between that child being completely cured or suffering potentially lifelong chronic illness.

Noon

Conservative

Len Webber Conservative Calgary Confederation, AB

You watch and wait, and you end up with an advanced form of Lyme disease, such as both of you have. There is no treatment here in Canada for it, obviously. You're seeking treatment outside of Canada; Jennifer, you mentioned going to the U.S. Why do we not have treatment here? Why can we not develop treatment here like they do in the States?

Noon

Lyme Disease Advocate and Patient, As an Individual

Jennifer Kravis

The drugs are available. The treatment that's typically used by doctors who specialize in this field consists of multiple types of antibiotics, often used in combination.

There are two reasons. One is that doctors have not been educated on the existence of treatment guidelines that explain how to treat an infection that can be persistent and disseminated. As well, many doctors feel like they can't. They are concerned that they will be stigmatized, harassed, or sanctioned if they go past the current guideline of two to three weeks of antibiotics.

Noon

Lyme Disease Advocate and Patient, As an Individual

Sue Faber

May I give an example of that? I tested two-tier positive in Canada. My infectious disease doctor treated me with IV antibiotics for a set period of time. When that time period was up, she declared me cured. Within six weeks of my curative treatment I developed new symptoms that were actually worse than before, including going completely numb at the tip of my tongue and in my fingers and toes.

I went back to her and said, “I'm developing new symptoms. This feels to me like I'm starting to deal with ALS-type symptoms.” Her response to me was, “Well, I can't treat you any further because the guidelines say I can't.” She denied me further treatment and suggested I go to a neurologist.

I then went to a neurologist, who said, “You don't have ALS. I can't help you. Perhaps you should go to an infectious disease doctor.” So, unfortunately, the door to any further treatment has been closed.

I am currently on oral antibiotics, and I can tell you that on this treatment I am able to be here today. If I was off this treatment, I would be bedridden, but unfortunately this treatment has not been provided by my infectious disease doctor.

Noon

Liberal

The Chair Liberal Bill Casey

Thank you.

Mr. Davies.

Noon

NDP

Don Davies NDP Vancouver Kingsway, BC

Thank you, Mr. Chair.

I'd like to first thank all the witnesses for being here, and in particular Ms. Faber and Ms. Kravis for sharing your personal stories. It takes a lot of courage to go in public and to come before Parliament to share what we all view as a highly personal aspect of our lives, which is our health. You're doing a great service not only to this committee and this Parliament, but to Canadians across the country. Thank you for that.

Dr. Lloyd, I'm going to start with you. I think I wrote down your words verbatim, where you said the framework fails to provide the leadership the community needs, and fails patients. That's a pretty fundamental indictment of a framework that is, I think, intended to and should be geared towards making Canadians' health better.

My first question is going to be what's the first thing that needs to happen to this framework to correct that deficiency?

Noon

Professor, Mount Allison University, As an Individual

Dr. Vett Lloyd

We need to bring the patient voice into it, because the current framework was written by the people who basically brought us to this position in the first place, and it endorses the status quo. That's not the situation we're facing in Canada.

Jennifer and Sue have described what they are facing, and many other Canadians are doing that. If you bring the patient voice into it, we can at least have the framework start to address the questions that are important to Canadians.