Health Committee on June 6th, 2017

[Jennifer Kravis]

I think the framework is missing an acknowledgement of the concept of tick-borne disease, as Janet Sperling has pointed out. Multiple infections, viruses, and bacteria are all part of the disease, not just one strain. It doesn't address multiple strains of Borrelia and multiple species of ticks carrying Lyme disease. It doesn't address the reality that patients can't get help from medical doctors or doctors don't understand the disease because they're not educated. It doesn't address the fact that we need education beyond “pull up your socks and put on repellent”. We need education for people on what to do if you get bitten, how to recognize them, where you're at risk, and how you need immediate treatment.

That's the main thing.

[Colin Carrie, Conservative, Oshawa, ON]

Did you want to add anything?

[Sue Faber]

My bent is congenital transmission but we also need areas of the blood supply and persistence looked into.

Why would someone like me be fully treated and cured and six weeks after completing treatment be very sick again and not get help? Instead of saying that they don't know what's wrong with me, let's engage and ask questions, and figure out what is wrong with me. If it is a persistent infection let's treat it. Patients need treatment.

Let's just liken it to any other illness. If you go to the doctor with pneumonia and he says your x-ray shows a whiteout on your lungs, he's going to treat you with antibiotics. If you come back a week later and you're not better, he says let's flip over the antibiotic to something else because maybe it's resistant to this one. Doctors are trained to take a critical look at the clinical presentation of their patients, and to treat them accordingly. Unfortunately, these guidelines that are being followed basically cage doctors to not being able to do what they need to do for their patients to help them live productive lives. I would like to see that changed.

[Colin Carrie, Conservative, Oshawa, ON]

On Thursday, we are going to have Health Canada officials here. I was wondering if I could give you the opportunity or if there are questions you'd like us to ask them. Is there one particular question?

Sue, you mentioned you have this book that is referenced quite significantly, and you've put it in front of them. When you met with them it was as if they had no knowledge of it. It's a little frustrating for us in committee here, and we'd like to work with our colleagues in the bureaucracy.

[Sue Faber]

It wasn't that there was no knowledge. Health Canada reported themselves in 1988; the transplacental transmission has been documented. When I spoke with Dr. Njoo, I said his agency has known for 29 years that this is happening, and asked why they hadn't done anything about it, why it wasn't in the framework. His answer to me, if I remember correctly, was that the framework was a high-level document and therefore issues like this were minor, or—

[Jennifer Kravis]

It wasn't minor. It was that the framework can't go into every possible study.

[Sue Faber]

The framework can't go into every possible study—I correct myself.

I said, “So you mean the lives of my children and of babies yet to be born are not considered high-level, highly urgent issues?”

He did not respond to me.

[Colin Carrie, Conservative, Oshawa, ON]

How am I doing, Mr. Chair, for time?

[The Chair, Liberal, Bill Casey]

You have another minute.

[Colin Carrie, Conservative, Oshawa, ON]

Under the guidelines, there's a call for continued support for front-line health professionals and labs to diagnose Lyme disease. Despite the call, it's well known that misdiagnoses are a major issue.

How many people are misdiagnosed due to insufficient tests? The current framework has no money allocated for better testing. Should there be? What are the consequences of continuing to ignore positive test results coming from non-accredited labs?

That's a lot for one minute.

[Sue Faber]

Is that for us?

[Colin Carrie, Conservative, Oshawa, ON]

Yes, or Janet.

[Janet Sperling]

I think that the costs of having people being misdiagnosed are actually pretty slight because most of the people who are getting the so-called false positive result get the treatment and then they get better.

One other thing, if I could.... Why aren't the patients represented? Because there's this kind of misunderstanding. In CanLyme, we have a lot of people who are doctors, research scientists, geologists. We have a lot of people and a lot of expertise. They would love to help, but they're being blocked. They're not being taken seriously. That's my real question. Why are patient advocates blocked from being in the room, asking the difficult questions?

[Colin Carrie, Conservative, Oshawa, ON]

That's fair. It's an excellent question. Thank you.

[The Chair, Liberal, Bill Casey]

Your time is up now.

Dr. Eyolfson.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Thank you, Mr. Chair.

Thank you all for coming.

My first question is for Dr. Lloyd.

You mentioned that there were examples of peer-reviewed research that was ignored. I only have five minutes, so I can't go into the details of all of it. Can you give me a couple of examples of authors and what their research has shown?

[Dr. Vett Lloyd]

I can't give you specifics, not off the top of my head, but I will give you examples.

Depending on which public health website you look at, you will read that the tick must be attached for either 24, 48, or 72 hours in order to transmit the disease. There are, however, reports showing transmission within 24 hours.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

I understand what you're saying, but would you at some point in the future be able to find that information and send it to us: the specifics of who these authors are and what their research was?

[Dr. Vett Lloyd]

Yes. Absolutely.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Ms. Sperling, you mentioned the test. I understand there is the two-step test. The Centers for Disease Control and Prevention talk about the enzyme immunoassay and the immunofluorescence assay, or what's called a Western blot.

[Janet Sperling]

I would call EIA and IFA one level, with Western blot as another. The way I understand it, you can do a EIA or IFA, followed by a more specific Western blot.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Okay, that's fine.

You talked about this specific blot with the banding pattern. Is this done regularly at all centres in the United States?

[Janet Sperling]

Yes. Absolutely.

In order to get the diagnosis of Lyme disease, you have to have that Western blot.

[Doug Eyolfson, Liberal, Charleswood—St. James—Assiniboia—Headingley, MB]

Will a Western blot, without that banding.... What is the advantage of this Western blot with a banding over a standard Western blot that you would get done at a Canadian lab?

[Janet Sperling]

It's a Western blot, but in the case of the national lab, if you have five or more bands, it's reported as positive. If you have four or fewer, it's reported as negative. You don't know if you had four out of 10 or if you had six out of 10. All we're saying is that if people could, say.... The other thing is that one of those bands is a pretty general band. It's a p41. If that one is positive, it's much less significant than some of the other bands, which are much more specific to Lyme disease.