Thank you very much, Chair, and thank you very much, to all of you, for very powerful and personal testimony.
I know that you're not just representing yourselves, you're representing a large number of people with Lyme disease across Canada. I do want to thank you for your advocacy. The work you've done has been great, from your advocacy that got the Federal Framework on Lyme Disease Act in place— and there's the assistance that my colleague, Ms. May, brought to that—which resulted in the draft framework. I know there's been a lot of advocacy and consultation in improving the draft framework, so I really did want to thank you and recognize that.
We have a meeting on Thursday with some of the people from Health Canada and others who were part of the framework design. How do we best talk with them? I did hear in your testimony something about the current state of recognition, surveillance, and treatment of Lyme disease in Canada, but some of that is what the framework is intended to do. I think we need to get the framework rolled out to address those issues. The three pillars of surveillance, education, and awareness, and guidelines and best practices, would address some of the concerns that I heard, particularly around primary care treatment and recognition of the disease, and best treatment protocols.
Then, in the listening stage between the draft and the final framework, there were four key areas that were amended based on your advocacy and your feedback.
One is research funding, so $4 million for the Lyme disease research network, addressed through the Canadian Institutes of Health Research. Dr. Lloyd, you and I may differ on this, but I have a great respect for the CIHR and their evidence-based science, peer-reviewed approach to this. That is looking specifically at improving diagnosis and treatment, so a big step forward is research funding.
There's the recognition that there are chronic symptoms. I know there's still a tension between recognition of chronic symptoms versus recognition of chronic Lyme disease as a case type. It identifies that research is needed yet to determine that.
Then there's improving health lab networks. I think everybody's in agreement that there needs to be better lab testing. I think all of our witnesses spoke to the need for better and more exact testing.
Then, finally, there are migratory animals and recognition that migratory animals can carry Lyme, which I think, Jennifer, you specifically mentioned as well.
From there, the easiest way for me to proceed—I have to ask questions and I only have seven minutes—is to ask what would you want me to ask the people who are coming on Thursday to make sure they hear your concerns, and that if we are able in any way as a committee to improve the framework or make suggestions, how do we do that?
I have some down so I don't repeat them.
I have, what happened to Dr. John Scott's research? Why wasn't it used? Why wasn't it referenced?
I have congenital transmission and is it true, is it not? Why is it not referenced and spoken to directly?
I have funding priorities. Who sets the funding priorities? Are they based on evidence and science?
I also then have a question around the patient voice. Why is the patient voice silent in the framework? How would the authors think that the patient voice would be best drawn into it?
That's what I have so far. Those are my four questions from your testimony.
What else would you like me, or any of the committee members, to ask on Thursday that would further, in your minds, improve the framework?