Thank you very much. I'd like to say that, speaking as a patient advocate, I'm not going to read my brief because I really want to speak from the heart here. On behalf of people who have Lyme disease and the people who end up looking after the people who have Lyme disease, we're really concerned that the framework at this point doesn't have enough patient representation.
Our expertise is really looking after these people who are very, very sick, so we have some concerns about all three of the pillars. Just as an example with surveillance, when I looked at the case definition, I was going through it, looking at it, and saying, “You know, this is looking pretty good. It's sure looking a lot better than it used to look.” Then I got to the end and I realized we only had nine provinces.
The way we undertake the surveillance is going to make a very big difference to what we see when we come out at the other end. We really need to have patient advocates pointing out some of these things that are really important because it does depend on where you are in Canada. The education and awareness needs to be locally adapted. As an example, in coastal B.C., you run into the Lyme disease tick generally in the wet winter months, and it's exactly the opposite in Ontario, so we need to have recognition that Canada is a very big country, and it is different from one end of the country to the other.
When we have this sort of standardized education, it's very important that we don't just rely on the IDSA guidelines. We need to make sure that Lyme disease as it exists in Nova Scotia is recognized, and I don't actually expect it to be exactly the same by the time we get to B.C.
I think the most important thing for the patients is that the IDSA guidelines made no attempt to apply themselves to Canada. They're looking at it from a very different perspective. We need to recognize that across the country we have variants of Lyme disease. The IDSA guidelines right now are confusing what's called surveillance criteria with diagnosing the patients. Surveillance criteria are very important, and those are the ones that need to be standardized, but the actual diagnosis and treatment of the patient don't have to rely on surveillance criteria. The IDSA guidelines fail to recognize a lot of research that shows that there is persistent infection. I do want to point out on the plus side that the really important part is that they recognize that the Government of Canada has a very important role to play.
The problem I see now with the national research network is that it stresses that you're going to consult with the provincial and territorial health regulatory authorities, but unfortunately, these are the people who have a history of minimizing Lyme disease. If you're not going to include the patients as equal partners, I see a problem. We know that early cases of Lyme disease continue to be missed because often doctors haven't understood that you can't take the serological result, especially early in the disease. We know that we have a lag time, and we're going to continue to have new cases of Lyme disease.
I'd like to quote a Canadian doctor and a professor who says, “...historical precedent repeatedly illustrates that diversity of thought and opinion, dissonance with the status quo, and openness to exploring new ideas are what moves medicine forward.” That's Dr. Stephen Genuis.
The Lyme disease network right now appears to be set up by restricting to the status quo, and science is the best tool that we have. There's no question that we have to use the very best science we have, and yet the guidelines are missing large chunks of science. If we rely on the same Lyme authorities that landed us in this situation, without inviting divergent opinions to the table, we're going to delay a Canadian solution to a Canadian problem that's continuing to get bigger.
Now, the infectious diseases doctors are tasked with reducing the use of antibiotics, and rightly so—there's no question there—but this does very little to support the family doctors, who are left with very sick patients. I'd like to close just by giving two very recent examples: one of them was last Friday, and the other one was as I was getting ready to leave for the airport yesterday.
Last Friday I was walking down the hall, and one of the building maintenance people stopped. I said, “How did it go? You went to the doctor, and how did it go?” He said he was afraid that the doctor looked at his girlfriend, who has a diagnosis of fibromyalgia, and said they would not make a referral to one of our highly respected Lyme-literate medical doctors. The basis of the refusal to send this very sick person for an opinion, that perhaps this could be a clinical case of Lyme disease, is that Lyme disease is a fad illness. What happened, the end result, was this very sick patient was sent home with physician-prescribed fentanyl. The poor lady is sitting on the couch, she's unable to work, she's in unbearable pain, and the response was to give her fentanyl.
The second story, which was on Monday, is of a dear friend of mine who got Lyme disease in 2008 in Germany. She got positive first-tier when she came back to Canada—and that was a positive C6 peptide—but they did a Western blot for the Lyme disease you'd get in the United States, and she didn't get a positive there. So she was considered wholly negative. Now her family doctor was listening to all this information about Lyme disease research and the framework, and he said, “Great, I'm going to phone up. I'm going to make an appointment for you to see the infectious diseases doctor because you're a classic case of somebody who's been missed.” She was refused the appointment with infectious diseases because she doesn't have two-tier positive serology.
These people really need to be dealt with very differently. The rigid system, which won't even see the patients unless they have two-tier positive serology, risks now being rewarded with more funding. If the funding is going to the same people, then the treatment isn't going to be any different. The same people who have denied the consideration of Lyme disease are the people to whom the research funding seems to be flowing. So at best, this framework is a baby step in the right direction, but it risks cementing in place the same rigid structure that failed patients for the past decades.
Thank you.