Good morning.
I have speaking notes, but I won't necessarily read from them. I want to provide a bit of context about where I'm coming from. I have had Lyme, and like many others I had to seek treatment in the United States to return to health. In this case I'm speaking as a scientist, and I'm going to focus on the science of the Lyme disease framework. I apologize for the people who are now thinking they have to sit through nine and a half more minutes of science, but I'll keep the science part light.
My feeling, in reading the framework document—and in being on the conference planning committee and presenting at the conference—was that this framework fails to provide the leadership that the scientific community and the medical community need. It completely fails patients. I'm going to go through the reasons I'm saying this.
The first reason is that the framework doesn't have a place for the patient voice. The patient voice did show up at the conference, and it was a spectacular conference. It was the first time we had brought together patients, scientists, and the medical profession. All the voices were heard. They were difficult conversations, but they were respectful conversations, and I felt we were making progress. Unfortunately, none of that material ended up in either the draft or the final framework, which were fairly similar, with some differences in window-dressing.
Without the voices of the patients, we don't know what's important and anything going forward will be more or less meaningless. There's too much of a disconnect between the people who need this framework and the way the framework currently exists. I would also point out that having the patient front and centre is intrinsic to the ethical guidelines for both medicine and science. This framework fails to meet either scientific or medical-ethical guidelines.
I'm going to talk briefly about science and the framework. The term “evidence-based” is tossed about quite liberally in the framework, but it is misused. What evidence- or science-based means is not that someone somewhere has done a study, and you like the results and they're convenient, and then you just declare the results to be correct. Rather, it means that you take all the relevant peer-reviewed literature and you ask whether it all says the same thing. If it doesn't say the same thing, you have to figure out why. You don't just ignore the stuff you don't like—that's the antithesis of science.
There's been an enormous history of cherry-picking within the whole development and management of Lyme disease in Canada. We've heard stories of that so I won't go into it, but it feeds into every aspect of the problem, from how long it takes a tick to transmit the disease to whether or not long-term antibiotics will help the patient. Really, we have to do better with science—it's the only tool we have. We have to do proper science, and that also means ethical science.
I have a list of science glitches, errors in this document. I'm not going to go through it, because lists are boring, but I will point out that the first sentence of the document is factually incorrect, and so is the second. That really isn't a good start. The first figure features the dots of doom that everyone in the surveillance section at the conference agreed to—this was the one section where people achieved consensus. There was consensus that it was not a good way to represent data, but still it shows up in the framework.
The real problem, from my perspective, is that the partners named as the people who worked together to bring this framework into action and to bring out its potential include a number of partners who have no research capacity. It excludes—and I do not know why it excludes them but it does—the two federal funding agencies, NSERC and SSHRC. NSERC regulates and funds research in the natural sciences, which is critical for a disease that's transferred via ticks from wildlife. The Social Sciences Research Council is critical because we're looking at what this disease does to people, what it costs the health care system, and what it does to communities.
I do not understand why scientists were excluded from this document. A corollary of scientists being excluded is that $4 million will now not be available for science.
I'm going to talk briefly about non-transparency. How the framework was assembled was non-transparent. The conference was transparent, but it was not used to inform the final framework document. In addition to being non-transparent, essentially people went away and nine months later the gestated document sprang into being. There was privileged access by the AMMI membership of the planning committee and that was documented, apparently by the AMMI member of the committee, unaware that other members did not have access to the document. Some people were allowed to see the draft document and comment on it, but certainly the patient groups were not and the science people, as far as I know, were not.
It's disturbing to have preferential input into a controversial issue where there are divergent opinions. We need to pull together. We need to accept that there are divergent opinions and talk to each other, and not privilege one side or the other. That is seen in the fact that the document specifically endorses one of the two treatment guidelines available for Canadian patients, but not the other, and it does not endorse the more recent one and the one with stronger scientific evaluations. It's also not clear to me why a policy document is dictating patient treatment modalities, because that should be determined by the physician who has examined the patient.
Funding is equally non-transparent, and we can see that in the fact that the funding priorities that are picked out are not the priorities that are important to the patient groups. I don't know where they came from; they did not come from the conference. They just appeared. In addition to all the issues that are important to Canadians—we've mentioned some in terms of congenital and sexual transmission—are there other vectors out there, is our blood supply safe? These are very important issues that are not addressed, and I don't know what happened to them.
To emphasize the importance of doing good science, on Friday of last week there was an announcement that they had found that for multiple sclerosis patients, long-term antibiotic treatment was reducing by half the number of patients who showed disease progression. All of a sudden when you start treating multiple sclerosis patients with treatment that would be appropriate for Lyme disease, you're seeing an improvement. That's really frightening. People will die of multiple sclerosis—I think that emphasizes how important it is to get this right. Canadians are dying of this disease when it's not recognized.
I'm coming to the end. I'm a scientist, and as my supervisors are keen to say, no scientists should be allowed outside unescorted, so I ended with questions that I don't have an answer to. Perhaps there is expertise in this room. Is it appropriate when drafting a framework to give some experts but not other experts, and certainly not the patients, access to directing the framework?
The document is essentially written so it will be reviewed in five years, but in this field, the knowledge of science doubles in slightly under two years. So we're left with a document, which you may feel is excellent or you may feel is terrible—I'm in the latter camp—but it will be even more out of date in another two years.
Is there a way to make this a living document? The reference within the framework that the Public Health Agency of Canada will continue checking diagnostics is not part of being a living document. It's their mandate to be continually staying up to date. Is there a way to have input into this document, ideally patient input, and definitely science input?
I'm unclear about whether it's appropriate for policy to be dictating patient treatment guidelines. That seems a dangerous thing for a high-level document like this to be doing.
My final point is just to emphasize that the ethical guidelines in both science and medicine state very clearly that the patient must be not just consulted—consulted can mean anything from, this is what we've decided to do, are you good with that?, sign here—it means the patients must be equal partners. They must be asked, what's important to you? How are we going to get there? Patients are not just fodder for being fed into science studies, and they're not just, here, take this treatment and go away and be grateful that you got it. We have to talk to Canadians who have this illness, and we have to help people.
Thank you for your time.