Public Health Agency of Canada - Hope Shattered & Promises Broken

APR 7, 2017 — At the federal Lyme conference in Ottawa last May, Dr. Gregory Taylor, then head of Public Health Agency of Canada, stood up and gave the following closing remarks (starts at 14:16 in the video link), clearly indicating how moved he was by the patient stories, and promised there would be transparency, progress on the issue of Lyme Disease, and partnership with Canlyme through the finalization of the Framework. 

Shortly after the Conference, Dr. Taylor left his position to be replaced by Dr. Theresa Tam. 

When you read this, it becomes easier to understand why the Lyme community is so devastated over the Framework - after the Conference, there was real hope and trust that Public Health Agency would actually partner with us to help Canadians. Instead, we got more status quo, marginalization, and sweeping under the rug, shattering the community of sick people, fighting as hard as they can to prevent OTHER Canadians from going through the hell that is Lyme Disease in Canada. 

Dr. Gregory Taylor, Closing Remarks, starting at 14:16

Transcript here: "Thanks Jim. Can everyone hear me ok? Great. I too like Jim had a prepared speech – mine was done by a speechwriter and I have to apologize to Cory when I go back but I’m not going to use it.

I wish I had some words of wisdom for you but I don’t; you’ve already said all the words of wisdom, and I thought that, rather than a prepared speech, as you’ve done, I need to speak from the heart. So I want to start by thanking everyone, thanking all of the participants, thanking my Tri-Chairs, thanking the planning committee. I think Dan and his team have done a spectacular job.

Staff of the public health agency helped prepared this and have done a great job and I’ll be thanking them tomorrow. Thank you.

If I was to describe my experience in the last few days - and I have been watching and listening, and the only thing that comes to mind is wow. That’s the only thing I can think of, it’s just been an incredible learning experience from the personal the last few days, and it has just been difficult to describe, and difficult to describe the pain that I saw in people and the anger that I saw in people - but as one of your facilitators said, the hope. 

And the hope that I have heard throughout, has just been incredible. People aren’t here to bitch and complain; people are here to make it better, and that’s great, and that’s where we are all on the same page. That hope and clearly that commitment and clearly the altruism because every comment I heard was about making it better for other people and making it better for other Canadians so we are on the same page for that one, because that’s our job too. 

I think I also wanted to thank you for a very vivid reminder with us where we work and I don’t get a chance to talk to real people most of the time in my job, I talk to representatives, and I talk to politicians. I don’t get a chance to talk to real people like I used to when I practiced medicine – clinical medicine, but the vivid reminder that if what we are doing at the public health agency, the federal government, is not making a difference to individual Canadians then we’re not doing our job. 

So… and I want to thank you for that. It’s very moving. It’s very moving and it’s part of why I do this job. People ask me why I left family practice, to go into public health, and in family practice as you know, you can make a big difference in the lives of 2 or 3,000 people, at public health you get an opportunity to make a difference in the lives of 37 million people, and we need to make that difference, clearly. So thank you for that reminder. 

The other reminder is we must engage Canadians better and more. We must engage patients, better and more. And you don’t need to hear that from me, our new Prime Minister has also said that on numerous occasions engaging Canadians. So very much in that spirit I think this event that we’ve had the last few days. 

I’m typically an optimistic kind of person, I like to focus on the good things. So what’s crystal clear and I think we’re lucky as Canadians, and in fact our colleagues in the States look at us in envy, believe it or not, from the CDC - Centres for Disease Control, we’re natural collaborators, and so I didn’t hear anybody today say they know exactly what to do so leave us alone so I can get it done - not one person. Everybody is saying “we need to work together”. So we’re natural at that and I think we need to be lucky, and proud of that. 

I like to focus on where we agree. Everyone has agreed we need better surveillance, both patients and ticks, no question. Everyone has agreed we need better education, better prevention. I said that at Power and Politics yesterday, people agreed, that I’m sure most Canadians would prefer not get sick at all than be treated well. If we can prevent Lyme disease then that’s the ultimate goal, that’s where the public health where I work is all about, it’s about preventing disease. 

Everyone agrees we need treatment guidance, improved treatment guidance – we need best practices, so we all agree upon that. It’s really interesting because this wasn’t intended to be a consensus Conference. This was intended to simply get input and listen to folks - but I hear a lot of consensus, I hear a lot of folks saying exactly the same thing, on both sides of the fence. Which I think is very positive for the way forward.

Certainly, what next? As you know the Act stated that we would produce a federal Framework. I like to put in “for action” because where I come from, the bureaucrats, if it’s not in it for action again, it’s a nice document that’s not very useful. Back at the ranch, we have all kinds of documents that we’ve spent hours producing that go nowhere. This has got to be for action. 

So we’re supposed to gather the information and we will do that, guaranteed. All of the input from these last few days will be posted for everyone to see. It’s being recorded- that will be posted, everyone is going to try to capture as much as we possibly can. 

As we develop this Framework, I think we should do it very quickly. Remember, the Framework is a roadmap for action. The real work is going to happen after we get that out of the way and get at the real work that needs to be done. I don’t want us to waste a lot of time doing this Framework and getting the wording just right, let’s just get on with it. 


So, you will have an opportunity to put into the framework, I will, we will, share drafts of that, we will get input. In terms of engagement, our point of contact is Jim. It’s been that way for a long time. He’s our conduit into you. So we will be sharing and we will do our best to ensure that your voices are represented in this one. And I think that you have to remember, this is not the first, although this is one of the best - this is not the end – we do need to - and I do want to echo Jim’s words, we need to engage on an ongoing basis, partnerships, partnerships with patients, partnerships with Canadians – that’s where we need to go. 

And so, again, so I don’t have any brilliant ideas, you have the brilliant ideas, although I must say some of them were great – “un-suck at sharing information”. Now I got to tell you how true that rings. We do surveillance all the time across Canada with the Provinces and Territories and - man, that could apply to everything we do – sucking it out of the Provinces sometimes. 

I was particularly struck by the “citizen scientist”. I thought that was kind of cool. That was really cool. Building on expertise in places you don’t expect it to be. We put ourselves as “experts” but it doesn’t mean we know all the answers and I think both of my colleagues have said “the science is one thing, interpreting that science in terms of what does it mean and what do you do about it is a little bit different.” So I thought that was good. 

Transparency, that’s key - absolutely key, and we will certainly do the best that we can to ensure that as we go forward, we are as transparent as possible. 

Building the business case – that was pretty savvy. In the political environments that we live in, when politicians have multiple conflicting priorities, multiple groups looking for money, you got to build the solid business case for investment and I think there’s lots of information here that will be able to help us build that business case. And the last one, which I thought the drawing was great, was sex with the ticks. So I knew I was in the right room when we started talking sex with a tick – that was great. Anyway…

Thanks again, it’s been a very moving experience for me personally and I do want to thank you all for sharing. There’s been some really amazing stories the last few days, and you all took a lot of risk. I got to say that. A lot of risk – revealed yourself personally because you believe that together, we can work and be more effective. I’m there with you. I look forward to working with you in the future. Thank you so much."