2016 Lyme disease conference breakout session 3: education and awareness discussion/next steps

Conference to develop a federal framework on Lyme disease

May 15-17, 2016, Government of Canada Conference Centre, 111 Sussex Drive, Ottawa, ON

Conference day 3: Tuesday May 17, 2016, Freiman/Guigues room

Audio Recording


Kathleen: [00:00:00]

… person to be including into the Framework, okay? That's our role this morning. We thought, as Dan, that we should do it in two parts. First, you know, you always want to know what are we trying to achieve? Then we can talk about how to get there, right? So, and I know we talked about some of what we want to achieve yesterday, so we could just pick up those threads again, but we're going to want to be really clear.

So part one is going to be: what are we trying to achieve? If we're-you know, Alain used the word "vision." Dan said, "If we're successful, what would it look like?" You know, what would we see in, I don't know, three years, one year, five years? Well, you put whatever timeframe you want in your mind. But you know, tomorrow!

Female: (Inaudible) what do we do now and what do we start working on?

Kathleen: Exactly, and that's-so in our strategies, we're going to want to think about short term: this we could do tomorrow and it will make a difference, this might take a bit longer, and this we know will take longer, but hey, it's going to help our kids and future generations. So we'll want to think about all that when we get to strategies.

But for now, step one is what are we trying to achieve? Like, what would success look like? You know, if you think someone from, let's say, Australia, came to visit Canada with an interest in seeing how things are done here, and they went, "Whoa, you guys really got this figured out!" Well, what would they see that would make them react that way? That's kind of the question, the first question, okay?

What I'm going to suggest is that we're going to brainstorm that question. Are at the back of the room taking notes. And then when we get to the second phase, we can sit down, the three of us together, while you guys are thinking about the next step, and we'll sort of summarize it and run it by you again. Yes, let me just hand you the mic.

Female: [00:02:02]

I think the first step would be to have a legislative bill to protect the physicians because if we have that protection, there will be an open mind and receptiveness when we talk about Lyme. It's not going to be like, "Oh, no, Lyme does not exist around here." So I think that that is the primary first step, and then the education will fall through and will have the support from the medical health system.

Kathleen: [00:02:37]

So (inaudible). So, well, one of the aspects-I think this is a way that we can put it, and then we'll talk about how we do that, but one aspect that we want to see is that doctors are able. They're not afraid of prescribing what's needed, right? That there's no fear on their part. That's one of the elements of vision we'd like to see. We'd like to see doctors freely being able to do what's required, right?

[Talking over each other]

Female: [00:03:06]

Okay. I think we could work much faster. Legislation takes a long time. So I think if we just lobby the College of Physicians and Surgeons in each province, educate them, then they'll get off the doctors' backs. But my, from a pharmacist's perspective, I want to see tick tweezers in every home, car, and cottage, and I want to see External Affairs have something about ticks in travel information. People are travelling all over the world. There's ticks all over the place that we don't know about that have different diseases from Lyme disease. So we need a website, an educational website. External Affairs is going to have to get onboard with not just malaria warnings but tick warnings. And tweezers in every home, tick tweezers in every home, with instructions with the tweezers. Every pharmacy, like, CVS Pharmacy has tick tweezers in the States; every pharmacy should have them here.

Kathleen: [00:03:56]

So that's another element of vision, and we said we'd talk about short term, medium term, long term, right? Let's talk about all those different things. But one of the elements of vision that we see is that there's readily accessible, everywhere, the tools people need, the information they need, so that's another element of what we're saying is part of the vision.

Okay. Yeah, go ahead.

Female: [00:04:18]

I think one of the quick ways to address the misinformation and to educate physicians about it would be to have the results from the Framework published in something like the Canadian Medical Association Journal.

Female: Yes.

Female: Because that's something which everybody gets in their mailbox. So it's a very quick way of reaching the population with "This is the state of the art about Lyme in Canada."

Female: And pharmacy, and nursing, and paramedics.

Female: All of those.

Female: Yeah.

Kathleen: So I'm going to ask, so we're getting sort of already some tactics and some how-tos, so we'll just track them as we go.


Female: [00:04:55]

We need the media. We need CBC. We need CTV. We need to have them take the information, not just, as you say, just to the doctor, but to the public, to everybody. Everybody needs to know, this week. This week, I'd like to say this evening, six o'clock news, okay?

Female: Yes.

Female: Yes.

Female: There needs to be a statement that says if you have Lyme, you are going to get help eventually and you don't have to keep going to the States. Because you know what? We're trying to tell everybody. It needs to happen today.

Kathleen: Right, so I'm just going to-I think we should capture that as an element of what we want: people not having to go to the States. They can stay here.

Female: [00:05:46]

Just to follow up on your media. So I mentioned this the other day and I got remarked with, "You're preaching to the choir here, Hun." I did an article in the Surrey Now. The way to get the media to do the follow-up, to continue doing articles, is to show that we are interested in this topic. So when you know that somebody's done an article, when you go online and you hit "Lyme" and you see these reports that have been done by reporters, comment. Don't comment on your friend's Web page, like all my friends commented on Facebook. The reporter doesn't see that. You need to go to the articles and comment so they say, "Wow, everybody wants this stuff! Let's keep writing!"

Female: Yes.

Kathleen: Yeah, that's a very good point.

Female: Surrey Now, there's an article right now: go comment.

Kathleen: Okay, do that today.

[Talking over each other]

Female: [00:06:34]

I believe that what we really need right now, immediate patient support. We need home care, we need recognition, and we need not to be put down because we look well, but we're not. Thank you.

Kathleen: Mm-hm! Absolutely. Okay, other elements of what you would see if we did well? And I'll come back to the front of the room.

Female: [00:06:55]

We need it out to our schools immediately, to our children. Day camps. Our children need to know what a tick looks like.

Female: And how to remove it.

Female: And how to remove it, and what not to do, immediately. They are at the most risk, and who has their voice? If they are ill, who is to protect our children? My grandchildren, your children.

Who wants it? Who's next?

Kathleen: This gentleman.

Male: No, it's okay.

Kathleen: Oh, okay.

[Talking over each other]

Kathleen: You may not agree with that. Okay, go ahead.

Female: [00:07:40]

I'm commenting on this from a family physician, emergency physician point of view, so I think in the immediate term, in terms of educating our profession, we first need to make sure that acute tick bites, the tick is removed properly, the bite is treated properly, because that's primary prevention.

And I guess the second part of that that I see is that we need to have most family physicians aware enough of Lyme that they at least know who to refer to if they don't know to do. And then the next part would be to have a sort of more limited group of family physicians that have a higher level of education about Lyme and can do the actual treatment. And then, which may be a more difficult step, we need to have a group of specialists who are aware of how to treat the disease and can manage the more difficult, resistant cases that the trained family physicians can't look after.

And I guess with all of that comes that whole ethical piece about treating patients with respect and not being dismissive of a complex disease that a lot of us don't understand how all these different presentations might be the same disease, but we have to get educated.

Kathleen: Thanks. Let me just give you the mic, and then I do want to give the folks joining us virtually the opportunity.

Female: [00:09:12]

I was just talking about outdoor ed. workers. So if you start with your municipalities, you have all those outdoor ed. workers, you have all your landscapers, you have-when I go to Sudbury and I do the Horticultural Show, which is usually right around now, I get all the Ministry staff coming to me that are dropped off in the fields working, and they're picking off ticks. I was at ILADS in Banff. The Hydro, they had 100 patients two years ago with ticks and the doctor did not know what to do. So we have a real problem in that we're not getting the information from a grassroots and we have to start from government, outdoor ed., the Ys, Hydro corporations. It has to …

Female: Military.

Female: You know, it has to go out.

Female: The military, they crawl through the fields and the mud.

Female: Yes, but they can get permethrin that we can't get.

Female: Yeah, they have access to it.

Female: They have access to the yellow cans of permethrin, and we only know because we've seen one and we don't get that. So, permethrin needs to be accessible, you know?

Female: Yes.

Female: There is an organic product, Mosquito Net [sic], which is in the States known for killing ticks, to spray in your backyards. It's all made of garlic. But in Canada, I'm still working with that company to try to get their papers all the way through so that we can list it. But Mosquito Net is available out of Toronto. It's $49 a gallon. I don't mean to do a pitch; I have no investment in it. But it's just that my group, my support group, needed that, and I'm an outdoor ed. worker. I worked with those day camp kids, crawling through Red Hill, the conservation areas. Conservation areas have no idea where to get Lyme information. None.

Female: Mm-hm, no signs up.

Female: No signs up. Okay?

Kathleen: Sorry, let me just give the folks joining us remotely a chance. Operator, is there anyone who would like to-what we're identifying is what we'd like to see in terms of results. Anyone like to comment?

Operator: Thank you. Please press *1 at this time if you have a question or comment. Again, please press *1 at this time if you have a question or comment. There will be a brief pause as the participants register. There are no questions or comments on the phone lines at this time.

Female: [00:11:18]

Thank you very much. I just had a question building on what the ladies were talking about with respect to education materials. Is there any place that you would go to now to find the information? Like, do you have a best …?

Female: (Inaudible).

Female: Okay, limited information or dissemination?

[Talking over each other]

Female: Okay.

[Talking over each other]

Female: Oh, I'm sorry, I'm hogging the microphone.

Male: The phone can't hear you.

Kathleen: (Inaudible), and if we have somebody listening that do not understand English, we have to use that.

Female: Okay. So my question, or my request, would be that we have one place where we could find the information and that it's a credible source of information, and put it all together. Because I had a few people say, "Oh, we have information for kids in B.C.," and I've never heard of it, and that's the first time I've heard of anything in Ontario as well, so I don't think we can have a patchwork.

Kathleen: Yeah, so one place. Credible, yeah.

Female: We have one place, and we need it someone like a facts website.

Kathleen: Yeah, up-to-date, credible information. Okay, yes, Madam? Results you'd like to see.

Female: [00:12:35]

Thanks. I have two comments. One is I think I agree with my family doc colleague that we do need family docs to be aware, but I think every physician should be able to treat acute Lyme disease, recognize and treat acute Lyme disease, and we need to do better at that. There's more complex issues around people with-long-term issues around Lyme disease, but I think everybody needs to be able to handle a tick bite and recognize and treat acute Lyme disease, period.

I also want to suggest that we-I like the idea of a clearinghouse. We do, in B.C., have a video that we developed for kids called "Tick Talk," which we have evaluated, we've used it in summer camps, and we've evaluated that it changes kids' behaviours and knowledge, but also their families'. They take it home to their family. So you know, that's something we'd like to have available for people across the country, and I think a clearinghouse with those types of resources would be very helpful.

Kathleen: Okay, over here, and then I'll go to the front of the room, one, two, three.

Female: [00:13:42]

Okay. Also going off your recommendations, doctor, I would like to know what is proper tick removal right now, because last week in Alberta it was, "Break the head off, it'll come out later," and that was it. The Cochrane Hospital in Alberta, and the nurse says, "We were just informed of this yesterday. This is how we remove ticks now. The head will come out later. Don't worry."

Kathleen: Okay, so …

Female: And they used Vaseline to try to get it to back out, so two well-known "Do not do's."

Kathleen: Does someone here know the answer to that question?

Female: [00:14:21]

My source is-can I say the name? Dr. M., for those that know. I don't know if I'm supposed to say much more than that. But I have attended a couple of his seminars and he recommends, for those of you in the medical profession might know the expression, a blister method. For those of us who don't know, they take saline solution; they inject it directly underneath the tick. When you try to remove a tick, it will panic. It can entice it to spit, throw up, regurgitate, put out fecal matter, whatever have you. When you put that saline solution underneath it, they then remove the tick, then they squeeze out that saline, so anything that it has deposited in you is supposed to come out. And this is Dr. M.'s only recommended method.

Female: For doctors, yeah.

Female: Yes, for doctors to do.

Kathleen: For doctors, for doctors.

Female: As for the rest, I mean, he says get it as close to the skin, but he says there is no way you're going to get it out without it leaving at least a barb in you.

Kathleen: Okay. And you know what? I really don't want this question to completely derail what we have to do, so did you want to make a comment about that? I'll ask you to be brief.

Female: [00:15:35]

Well, sorry, my suggestion on it would be a Canadian government website with standard information that's going to be good across the board and links to different provincial information, because we all have different ticks, but some of the information is the same across the board in it.

Female: Yeah.

Female: Yeah, we all go to the same spot.

Kathleen: Okay. So let me just get back to those of you that had your hand up, and I know you had your hand up a while ago. (Inaudible).

Female: [00:15:58]

Okay, thanks. I'm a naturopathic doctor, and in comment to this lady's comment here, I do think that all physicians should have access to prescription rights. My B.C. counterparts, my NDs in B.C., I graduated from Vancouver, used to have prescription rights. Now I practice in Ontario and cannot prescribe. I see all patients falling through the cracks. Patients who have Lyme disease come to naturopathic doctors because they can't get help elsewhere, and I'm very willing and ready to prescribe but cannot. Luckily, I do have MDs who will prescribe for me, but it would be so easy, so fast, and so much more cost-effective if I could have prescription rights here in Ontario and if NDs could all have prescription rights.

The other thing I wanted to comment was about the media. If we see media, yesterday my husband sent me this article from The Journal Chronicle [sic] that said-he said on the fifth-last line, "Ticks are harmless but can be a nuisance."

Female: Oh!

Female: What?!

Female: I'll forward it to you.

Female: Where did it come from?

Female: From The Chronicle Journal. So when we hear it, my husband responded right away and said-so media is not getting the right information.

Female: Where is it?

Female: Chronicle Journal, in the States. So I just really feel that all physicians in Canada should have access, and that includes naturopathic doctors. I'm almost done. There has been-naturopathic doctors have been treating with antibiotics without any issues for years now, so you know, this is really what I want.

Kathleen: Okay, good. And I'm going to check soon on folks that are joining us virtually. Over here, and then over to you, Matt.

Female: [00:17:42]

I had a chance to have a conversation with Dr. Moore afterwards, seeing that, hey, I'm in his neighbourhood, and we came up with an idea of putting together something very similar to what you were suggesting: a multi-faceted or a multi, I don't know, speciality group, and I mentioned we need a naturopath working with a neurologist who works with-because as I explained to him …

Female: (Inaudible) naturopathic doctors-sorry to interrupt you.

Female: Microphone.

Female: Naturopaths can get a weekend course (inaudible).

Female: Oh, okay, okay, okay.

Female: (Inaudible) use naturopathic doctors.

Female: Okay, make sure that you got the ND in there.

Female: You got to get them in there.

Female: But that it needed to be somebody other than, in my case, I can't get my ID. Actually, I just got a text from the Ottawa infectious disease doctor who was going to give me an appointment because I can't get one in Kingston. So we need to have options that move aside from a**** ID doctors.

Kathleen: Alright, hang on. So there's a few people who have been waiting for a while, and then I'm going to go check on the Web.

Female: [00:18:58]

A lot of this is great information for change and I think the education piece is going to take a little bit of time for all this to come about, so maybe we should brainstorm what the most impact, the way we can get to the public the fastest. I believe it's TV commercials because not everyone looks at the websites. Not all doctors read the information that's sent to them. I'm sure they're bombarded with a lot of things that they don't get time to read quickly. So for immediate impact, if we could have a TV commercial that runs from the Canadian government like they do for other things, you know, for the fastest way to get everybody so that the awareness starts to grow.

Female: Canadian (inaudible).

Female: Canadian, yeah.

Female: Canadian is the key word.

Kathleen: [00:19:39]

Canadian is the key word. Okay, let me just check on the WebEx folks. Operator, can you see if someone wants to speak?

Operator: Certainly. Thank you. Please press *1 at this time if you have a question or comment.

Kathleen: And, Operator, do you know if we have people that are joining us remotely?

Operator: Yes, we do have people joining remotely.

Kathleen: Oh, we do? Okay.

Operator: And we do now have questions that have queued up. Our first question is from Helen Gagnon. Please go ahead. Your line is now open.

Helen: [00:20:12]

Hi, thank you. I just wanted to make a couple of comments. I was just hoping that doctors would know to send the tick off right away after they remove it from someone so that we can have reporting.

Kathleen: Okay.

Helen: And I was hoping that there could be accurate tick information on hiking trails and parks, and if people could have that information in elementary schools, high schools, and universities. Thank you.

Kathleen: Okay, thank you. Was there someone else joining us via WebEx that would like to make another comment?

Operator: Thank you. Yes, we have another comment from Barbara Herb [sic]. Please go ahead.

Barbara: [00:20:49]

Hi. That's Erb. The previous caller mentioned about having ticks sent off for testing. I'm just north of where Dr. Kieran Moore is and that's in Lanark County. And in our county, the health unit does not do testing of the ticks. I think I wonder what kind of a role the public health units have to play in all of this because they actually do the testing for Lyme disease and that other labs do not. That's what takes so long, and I think that they should have a role then, therefore, as well, in terms of education.

Kathleen: For sure.

Barbara: I'm not sure if that comes from a provincial or a federal level, but whether it should come from either of those levels or whether the national standards should set the pace for the local authorities who are in charge of education.

Kathleen: Okay. Thank you, Barbara, and I'll come back to the WebEx folks in a moment. Over to you, sir.

Male: [00:21:52]

Good morning. I work for Hydro One, which is a large employer in Ontario. And as a person that had Lyme and talking to employees in Hydro One, I'm not allowed in my presentation, or I'm not supposed to, or management criticizes for me, going outside of what the Ontario government has put out. So if I talk about the attachment time, that treatment isn't quite right, they criticize me and sometimes shut me down. So that is a problem here in Ontario, and you're not allowed to talk to people about Lyme above what guidelines they've put out there, so that is an issue here in Ontario.

Female: (Inaudible).

Male: Because the Ontario government has put out these guidelines, like Mr. Moore had said, Dr. Moore had said yesterday, and you're not allowed to talk outside of those guidelines. You're not supposed to.

Kathleen: So in terms of, again, the elements of what we'd like to see, we'd like to see the opposite of that then. We'd like to see, you know, guidelines that the whole country recognizes so that you can't have situations like that all of a sudden, right?

Okay, so I want to make sure. I know that some of us are more extroverted than others, and I want to make sure that those of us that are introverted have an opportunity to speak as well, so I just wanted to just go to those we haven't heard from yet and then I'll come back to everyone else. Okay.

Female: [00:23:17]

In regards to the media and the information they're putting out, we want to be part of any framework because we don't want to hear they're going to put out more b***, basically. Because I do a lot of media and we do a lot of media, and we tell the media all this stuff and then they go to the powers that be and they cut out everything we say.

Female: Yeah. Right.

Female: And then they say, you know, like, it's not a problem. So we, someone needs to be, we need to be involved in the framework on what information is going to be put out, like, in the end.

Kathleen: Yeah, absolutely. Okay, let's just take a few other comments, and then I think I'm going to suggest that we switch gears. Again, I'm going to start just with folks I haven't heard from yet and then I'll come back to you guys.

Male: [00:24:05]

So I actually had a comment about the commercial. Like, I myself remember a commercial about house hippos that was on, like, ten years ago.

Kathleen: House hippos?

Male: I don't know if anybody else does, but you know, house hippos, it's nothing. It's just about asking questions on TV for kids. It doesn't take long to get that message across and it's not a lot. But the problem is relying on news sources and CBC to make a credible article that people take as fact, and I think that's the wrong way to go about it. You need educated people who know about Lyme disease to make their own commercial, and for that, though, you need funding, so I think that's kind of a big thing. And I mean, I sat here for a day listening to how incredible, or non-credible, the two-tiered testing methods were and how flawed everything is, and then I heard Christina on CDC defend it and kind of talk about how all this was kind of fact, and that's a huge problem. If we're going to start, we have to start with what's wrong, and what's wrong is our treatment methods.

Kathleen: Okay, alright. So I'm going to take these last few and then I'm going to sort of suggest we switch gears. So I don't know whose hand was up first. I'll come to you in a moment.

Female: [00:25:17]

Mine is really quick. I wanted to say this before but I answered that question. I think one of the things I'd really like to see is I understand doctors' time slots for appointments are like 15 minutes. There is no way that my doctor can help me in that time. I don't have enough time to tell them what's wrong. My first appointment when I got diagnosed at a naturopath was an hour and 58 minutes. It's from my understanding, I could be wrong, but my doctor cannot bill for a two-hour appointment. That needs to change.

Kathleen: Okay. And again, we're going to switch gears soon.

Female: [00:25:53]

Okay, I'll be really short. It was just something that was said in the main room about education, and when I was thinking about it, I was thinking I think before we can make the suggestions on how to educate, we have to have the absolute facts of what it is we are educating. Not, "We know better," but we have to have guidelines, factual guidelines, as to how we can educate.

Female: Canadian.

Female: Canadian, yes, thank you. Because we need the foundation. If we don't have the foundation, we can't build on it. I had a discussion with someone last night who said she couldn't treat her children because it was against the law. And I went, "Really?"

She said, "Yes, they could take my children away."

I said, "That has to change." You know? Like, we need to put those things down so then we can say, "Okay, if this is the situation, now we can start working with you."

Kathleen: Okay.

Female: And one quick note, they called me this morning from CBC. I was just outside in the hall. They did an interview. I thought they were going to ask me about the whole conference. It was someone from Montreal. I thought they were going to ask me about the whole conference; they wanted to know my personal experience. But I did get the conference in, and it's going to be on at noon today. That's why she wanted me now. So it'll be very interesting because Sally stood by me and heard everything I said, and she's going to send me a copy after it's aired, and then we will be able to see if what I said is what she says: that will be interesting.

Kathleen: Always very interesting. Okay. So one more comment, and then I'm switching gears.

Female: [00:27:36]

I would like to see Canada take the leadership. This is not just a Canadian problem. This is a world problem. Let's take the leadership, get the money, get the science, and be the real leaders in this country.

Kathleen: Okay.

Female: (Inaudible) and they'll be happy.

Kathleen: Yeah, exactly. Okay. Operator, can you see if someone has a comment from WebEx?

Operator: Certainly, thank you. Once again, please press *1 at this time if you have a question or comment. We do have a question or comment from Bruce Luft. Please go ahead. Your line is now open.

Kathleen: Go ahead. Bruce?

Judy: [00:28:15]

I'm not Bruce. Oh, hi. I'm Judy Hodge. I'm the One Health veterinarian for the Province of Manitoba. One thing I'm interested in hearing more about is combining educational messages. So in Manitoba, rabies is still a big problem for us and we also have West Nile and things like that, so when we're talking about putting information up at trail heads and in schools, I think that's really great, but I'm wondering about if anybody's got experience in sort of combining messages in a way that keeps it still understandable, right? I don't want any message to get lost in there, but so just wondering if people have any experience with that or (inaudible).

Kathleen: So ways of piggybacking messaging to get it out there?

Judy: Yeah, to get the most bang for our communication dollar, I guess you could say.

Kathleen: Okay.

Judy: Yeah.

Kathleen: I'm going to-you know what? The next step of our discussion is going to be how-to, so if we can put that question on hold.

Judy: Oh, sure.

Kathleen: Because I think we should address it for all the different audiences we're going to talk about.

Judy: Okay, great. Thank you.

Kathleen: [00:29:21]

Thank you so much. Let me just tell you. I've been sort of taking notes because I'm trying to paint the picture of what we'd like to see first, right? Because you guys talked also a lot about tactics, which is what we're going to pick up again. But let me just, very quickly, tell you the things I've jotted down in terms of this is the picture that we would like to see when it comes to education and awareness, okay? And you tell me if I've got something important missing.

So I've got one source of credible information for Canada, credible for the whole country. Doctors are not limited in their treatment. You know, they can treat you the way you need to be treated, and they have time; they have the time they need to do so. One of the last comments we heard, Canada is now a world leader in this area. People don't have to go to the U.S. The issue is well-covered in the media but the media is well-educated, what they're saying is founded. Consistent patient support with respect and ethics. Prescription rights for naturopaths.

Female: And pharmacists.

Female: Naturopathic doctors.

Kathleen: And pharmacists. Naturopathic doctors. Thank you for correcting me again.

Female: And pharmacists.

Female: And what about IV?

[Talking over each other]

Female: Yes, but that should be part of it.

Kathleen: Sorry, what's I …?

Female: Intravenous. Being able to give intravenous medication.

Kathleen: Oh, okay, and IV. Okay. So again, last message we heard, messages are strategically combined when appropriate. Kids are fully educated. Kids know all about this. Physicians know what to do; this is one of the first things we talked about. They know what to do and where to get credible information. There's no doubts about that. Information and tools are readily available to everyone. And we've got multidisciplinary teams working on this. People are talking to each other from different groupings.

So those are the, again, not the how-tos, but the what we'd like to see. Is there anything else we need to add to that list?

Female: [00:31:27]

Two things. Just to fix the first one, you said a credible …

Kathleen: Source of information.

Female: Yeah, so I think it's factual information. You want a credible source but we want factual information.

Kathleen: Oh, yes. Factual information.

Female: Yeah. And then the second one, I heard the lady at the front talk about technology, access to technology, because we don't have some technologies here in Canada that are available to prevent. Yeah.

Kathleen: So do you want to say more about technology (inaudible)?

Female: Well, you were talking about …

[Talking over each other]

Kathleen: Hang on, I need to give you the mic.

Female: [00:31:59]

Health Canada, I believe on the website, says that pyrethrin is what you should be using to prevent ticks, but we cannot access it in Canada. So we need access to something that will help our workers, our field sports. Any kid that plays a field sport is at risk of Lyme disease and we don't educate at a recreation level to any of those groups.

Kathleen: So is that … What you said, that word, I don't know what it is.

Female: So she's talking about-oh?

Female: It's permethrin.

Kathleen: Oh, okay.

Female: Permethrin. Sorry, I can never say it. I get tongue-tied. Permethrin.

Kathleen: I thought you were talking about technology.

Female: Well, she …

Female: DEET is technology.

Kathleen: Oh!

[Talking over each other]

Female: They're preventative, preventative resources, yeah.

Kathleen: Okay, so I won't even try to write that word, but I'll check the spelling on it before I do anything it.

Female: Yeah, I can't see it, so I can't (inaudible).

Kathleen: Okay, a few more comments before we switch gears.

Male: [00:32:47]

Permethrin right now is available through amazon.com.

Female: Will they ship to Canada?

Male: They will ship to Canada.

Female: Okay, good to know.

Male: Okay? But …

[Talking over each other]

Male: It's also-I'll give the …

Kathleen: Okay. So there's a few people who really want to make comments, and I'll hand it over to you in a moment.

Female: [00:33:07]

Yeah. Okay, so permethrin is available in the U.S. for personal use that you can use on your clothing. And one of the issues that we've had with Health Canada is that they provide that information saying you can use it. Now, I wasn't sure about Lyme disease, but for sure they say Zika, that you can use that, and we don't have any registered here. So what I would ask is that we could find a mechanism to ask Health Canada to seek out new technologies, or current technologies that are registered in the U.S., because …

[Talking over each other]

Female: Okay. So, and the other technology you were talking about trying to bring it to Canada, it's …

[Talking over each other]

Kathleen: You have to always give people the mic when you want them to speak.

Female: [00:33:53]

I have an allergic reaction to the mic. Mosquito Net, which is-I've just found out about this company, because they have a family member who has Lyme, and this company has been in Canada, Toronto, for 12 years. In the States, it says that it kills ticks. They use it in the equestrian, and that's another field we need to inform people, is the whole equestrian field. But you can use it, and all you do is you take the concentration of the Mosquito Net and mix it with, say, two-thirds of water, and spray it all in your yard. You can spray it on your clothes. You can spray it on your animals. And you know, it's safe. But in Canada, they can't get-we're having trouble. I'm helping them try to get their papers approved to be able to say the same thing that the U.S. says. So we have more difficulty with our …

Female: (Inaudible).

Female: Yes. Here, I can't sit anymore, so …

Female: Go get it, go get it.

Female: [00:34:43]

Okay, so the difficulty is around efficacy. The efficacy trials in Canada are much more onerous than they are in the U.S., so you have to applicate so many trials. And so, when you want to say it kills Lyme, you have to prove it 9 out of 10 times, right? So it's-pardon?

Female: (Inaudible).

Female: I'm sorry, clothes ticks when you were making a claim, though, on a treated article for that. So my request would be that we ask for access to technology that's currently available, you know, in other jurisdictions, and that-because we have-I used to work for the farmers, many years ago, and the same kind of situation, where technology is not available to a smaller market size. And if you make that request from this, I would imagine that there would be action from within Health Canada to do something about that.

Kathleen: Okay. We're going to have to switch gears soon. I've been saying this about 17 times so far, but go ahead, (inaudible).

Female: [00:35:35]

I'm just going to comment on the permethrin. We just ordered some. It is available on amazon.ca. I have enough to make 90 gallons of spray for my family, yard, farm. Not cats; it will kill cats. Unless you don't like cats.

Female: What about dogs?

Female: It's available at Horse Lover and Easy Pet Canada. You can order it through livestock websites.

Female: Can you repeat those two companies?

Female: I don't have cats; is it good for dogs?

Female: Yes.

Female: Okay.

Female: You use it on your livestock, your pets, anything but cats, and your clothing but not on your skin. Your camping gear, everything. And the website is HorseLoverZ and Easy Pet Canada. And we have it at our house and I have many spray bottles mixed up and employed already.

Kathleen: So if I stand next to you I'm likely protected?

Female: Well no, not today, I didn't …

Female: No, stand next to Linda.

Female: Stand next to Linda, she knows it!

[Talking over each other]

Kathleen: Okay, okay, go ahead.

Female: [00:36:41]

Sorry, I just wanted to add the fact that all of the military personnel's clothing is covered in permethrin, and that is being used by the Canadian government. I would like to be able to use it myself.

[Talking over each other]

Female: Combat, not their dress uniforms. Not their dress uniforms.

Kathleen: So we are going to talk about recommendations in a bit, all recommendations for action, okay? But let me just sort of do this. First of all, I feel I should ask the operator to see if there's anyone that's been patiently waiting this whole time.

Operator: Thank you. Once again, please press *1 at this time if you have a question. There are no questions or comments registered at this time.

Kathleen: [00:37:31]

Thank you. Okay, so here's what I'm going to suggest. You know, many of the audiences that we talked about, right? Children, physicians, whatever, they can't be approached the same way in terms of education and awareness. So what I'd like to suggest is that just before we break, and been tracking-when you guys have mentioned audiences, he's been tracking them. What I'm going to suggest is that let's just look at that, decide how we want to break them up, and then we'll spend some time after break saying, "Okay, with this particular group, what are we trying to achieve? How do we reach these? Like, who are the people that influence these people, right? And how would we get that kind of thing?" So can we just do that before we take a break? Okay, thank you.

So there's public. Public. Let's consider public sort of like, you know, the mass. You know, those messages that go out to Canada, okay? That could be one thing. There's patients. Okay, you guys stop me if there's groupings that you don't want to talk-or, you don't want us to address. Media. We talked about the media, right? The people that deliver those messages. Children. Now, you may want to decide to make that a subgroup.

Female: (Inaudible).

Kathleen: Yeah, okay. Well, so let's just pull them out first. Some of these are … What's CMAJ?

Female: Canadian Medical Association Journal. (Inaudible) journal.

Kathleen: Oh, so that's kind of a way of reaching. Yeah, okay. Parliamentarians.

Female: (Inaudible).

Kathleen: Probably. Well, you guys can decide. So, medical professionals, we will put them over here. And again, you know, you may decide: is it medical pro-is that okay if we talk to them as a group or do you want to …? We can only break this down so much in the hour that we're going to have left. Veterinarians?

[Talking over each other]

Kathleen: Okay, so this is like federal and provincial and regional public health, so basically it's like the governments, right?

Female: Well, it's a portion of the government.

Kathleen: It's a portion of the government, yes. See, this starts to be a little bit detailed, like hydro, military. I don't know if we can afford to get into that much detail. I mean, you can include them in your discussions.

Female: [00:39:56]

I think there's subgroups of (inaudible).

Kathleen: Can you give her a mic? Could you just give her a mic? Yeah, there's subgroups, eh?

Female: Yeah, there's subgroups. So under the messaging that we want to do, I think we have schoolchildren. We have, you know, the medical professionals.

Kathleen: Yeah.

Female: We have the federal government, public health specifically, and then we have the sticker that you have. So under public health, you can list all those subgroups underneath there so that we have three or four bullet points with the breakdown so that when this goes to the staff people that are supposed to work …

Kathleen: Okay.

Female: … that they're very clear that the naturopathic needs this. So you have a goal and an objective with an overall statement.

Kathleen: Okay?

Female: Okay.

Kathleen: Actually, could you help with maybe running the mic?

Male: Yeah.

Kathleen: That would really help me.

Female: You don't have 16 mics?

Female: [00:40:43]

Utilize your advocacy groups with effective, really good information to help get out the information.

Kathleen: Okay, so is advocacy groups another audience?

Female: We don't even have that up there but I think we're one of the first …

Female: Yes.

Female: They're not audiences. They are contributing partners (inaudible) educators.

Kathleen: See, that's the thing here. They're probably-when we talk about how to reach these groups, you're probably all going to talk about advocacy as having a …

Female: Right, okay.

Kathleen: These are like the people we want to get the message, right?

Female: Yes.

Kathleen: So, so far, we've got public, public at large, patients, parliamentarians, children, medical professionals, public health, vets, and media.

Female: Can we put vets under medical professionals?

Female: Yeah.

Kathleen: Okay.

Female: Yeah, there you go.

Kathleen: [00:41:35]

Okay. Is there any important audience missing? Like, and I know there's a lot of sub-audiences. And I'm actually going to ask you guys when you're working, because we're going to kind of split up, otherwise we'll not get this all done, that for example, those of you that are going to be working with this, medical professionals, you're going to think about, you know … But is there a big group missing here?

Female: Outdoor field sports, anything recreation.

Kathleen: Recreation? So should we put them-okay, recreation?

[Talking over each other]

Female: That could go under the children.

Female: Or other outdoor enthusiasts.

Kathleen: Outdoor enthusiasts?

Female: High-risk populations.

Female: [00:42:15]

Sorry, I think outdoor should be its category. Then you have its subs: outdoor workers, outdoor players, that kind of thing.

Kathleen: Okay.

Female: But outdoors (inaudible).

Kathleen: Yeah, and keep in mind that if you keep a group too broad, your outreach efforts are not going to be effective, eh? We're not going to be able to talk about. So this is, like, at least tailored. Yes?

Female: [00:42:37]

What about sexual transmission?

Female: Yeah.

Kathleen: So, I think that's more about messaging. It might be relevant for all of these people, right? That's about the content of the message, whereas right now we're just trying to identify the big target groups, the people we need to talk to.

Female: [00:42:57]

Well, under outdoor enthusiasts, we need gardeners.

Kathleen: Okay.

Female: A lot of gardeners get bit.

Kathleen: So we'll write that in. And again, I'm going to let you guys identify the subgroups, okay? So …

Female: Pet owners are not on this.

Kathleen: Per owners? So maybe we need to think about pet owners. Maybe put them with vets then, and then the group that's thinking about them can think, "Yeah, but there's also the people who own the …" Okay.

Female: When I said gardeners, I meant people working in their own yards, not professionals.

Kathleen: Yeah, yeah, absolutely.

Female: And gardeners (inaudible).

Kathleen: And landscapers, right.

[Talking over each other]

Female: Okay, because I stopped a gardener and I asked him (inaudible).

Kathleen: Okay. How many have we got?

Female: And he said, "What's a tick?" And this is a guy who's in everyone's backyard.

Female: Wow.

Kathleen: [00:43:44]

Seven, eight? Okay, I'm going to suggest that we not generate too many categories because there's only so few of us in the room. We've got eight right now, I think. Is that okay as a start?

Female: Yes.

Kathleen: And if we think of someone else, we'll add them, but for now at least we've got some. Okay, so after break, we're going to think about each of those, okay? And I am going to ask you guys to split up because there's no way we'll get it all done consecutively. How about a 15-minute break from whatever your watch says? Soyez de retour dans quinze minutes. And those of you joining us remotely, I will explain what we're doing, but you obviously won't be able to participate in a group, but I'll explain what we're doing and we'll seek your input.

Female: (Inaudible) break?

Kathleen: I've been asked to actually try to let you go at noon. I know that Dan said there's a bit of flex, but I've been asked, "Try to let them go at noon," so that we don't-so everyone has time to get-because there's a big crowd, right? So let's try to be done at noon. So here's what …

Female: Yeah, but it's not life or death.

Kathleen: It's not life or death, no. For sure.

Female: This is life or death.

Kathleen: This is life or death.

Female: Exactly, exactly. Us eating is not that important.

Kathleen: [00:45:02]

Okay, alright. So here's what we want to do next. So what we've done, you guys are going to choose where you want to go in terms of where you want to have the discussion, and you don't have to just go to one. You can go to different groups. So for example, you know, we were just talking about the messaging around sexual transmission, right? That may be relevant in more than one group here, you know? So, or you know, whatever it is you feel is important, just go to the groups you want to talk about, okay? So you don't have to stay the whole time. You can if you want, but you can circulate as well, okay?

I'll tell you generally what questions, and I've posted the questions next to the flip charts. And if you need more paper, we'll give you more paper, by the way. But here's the questions I'm suggesting.

So for example, as it relates to, I don't know, kids in schools. Kids in schools. Let's say this one here. My first question is what should our education and awareness goals be with this audience? Because it's not going to be the same as physicians, right? So that's the first question.

Female: Or maybe it is!

Kathleen: Or maybe it is. Maybe it is.

Female: I would think that the children could change places (inaudible).

Kathleen: Okay. So what are we trying to do from an education and awareness perspective with parliamentarians, with kids? The goals will be different likely. That's the first question. And don't spend a whole lot of time on that. I mean, I think you guys intuitively know it. And I've also said, "What should our key messages be?" because the two kind of go together, right? You know, these are our goals and key messages, okay?

I'm going to ask you to be concise, okay? We're not writing a communications plan here, guys. That takes way more than an hour, right? But what we're doing is we're putting forward the things we think they have to consider, the people that are writing this. Question number one.

Question number two, what are the best ways of reaching them? So for example, kids' schools. What's the medium or the media? What are the communications vehicles? Who are the influencers? You know, because sometimes that's the one where you look at it. With physicians, who influences physicians, right?

The third question is kind of a catch-all. You know, I said, "What will critical success factors be?" You know, if we're successful in raising awareness with this audience, what must we keep in mind? What's going to be important? So you know, for example, with kids you might say it's got to be tailored to their media. I mean, you know, they're using screens, right? So that's kind of the idea there. It's kind of a catch-all, number three. You can put anything you consider important in number three, okay?

There was a suggestion made that it would be nice if we had sort of a professional, a health professional, in each of the groups. I'm going to let you guys sort of decide how you-because I want you to go to the topics you want to go to. I don't want to force you to go to any particular topic, and I want you to take the time in each one that you are interested in.

What I'm hoping, though, is that we're going to cover them all, so here's what I'm going to suggest. In a minute, I'm going to say-oh, and I'm going to bring you guys some markers, by the way. In a minute, I'm going to ask you guys to go to the ones you're interested in, and then those of you who really care, like for example, patients, "I really want to say something about patients," go to those groups. And then those of you that are kind of, you know, "I'm good with any one of these," hang back and see where there are gaps and go to the groups where there's no one. Because I think if we identified those audiences, it's because we think they're all important, right?

Female: Mm-hm.

Kathleen: So just so you know, I'm just going to read off where they are.

Female: We should move around a lot.

Kathleen: I would encourage you guys to move around, you know? But some people may really want to stick with one group and I don't want to force you guys to do that one way or the other.

Female: No, no.

Kathleen: So, federal/provincial parliamentarians is here. Medical/vet-and remember, you guys could include subgroups if you want, right? This is the public. Public health agencies, FTP, regional. Patients, kids/schools. Can someone read that one over there? That (inaudible)?

Female: Media.

Kathleen: Media?

Female: And message providers.

Female: And rec and outdoors.

Kathleen: Outdoor recreation, okay? So those of you joining us via WebEx, unfortunately, obviously, you guys can't form a group because of the way we've organized the WebEx. So what I would encourage you to do is think about these three questions, which I will repeat in a moment for you joining us via WebEx, and when we come back in plenary I am going to ask everyone to add, because we're going to report on our work and any one of us can add, including those of you joining us via WebEx, okay?

So let me just repeat the questions for those of you joining us via WebEx. Question one, for any audience that you want to think about, right? So you might say it's parliamentarians. First question, what should our education and awareness goals be with this audience and what would our key messages be? Question two, what are the best ways of reaching these people, of influencing these people? And three, what will the critical success factors be with this group, or with any of the groups you want to talk about? Okay?

And then when we come back in plenary, as I say, I'm going to go around, ask you guys to report on your work, and you guys can all add. So even if you haven't been to the veterinary ones, well, you can add at that point as well. Alright?

So are there any questions about how we're going to proceed? I'm going to suggest, you know, if we want to be out of here about at noon, I know that if you want me to stand up this afternoon, you at least have to give me minutes to eat. How about we aim to be done, let's say, this round in about half an hour? And then it gives us about 40 minutes to come together and look at it all and agree on and add. Okay? So let's try. So for those of you joining us via WebEx, let's aim for you guys to be back at about 20 after.

Female: Could they not talk to the Operator to get some comments passed on that way?

Kathleen: I don't know-oh, it's not organized that way? Apparently not. But they can give us their thoughts as they listen to our reports, right? And they can think about it.

Female: (Inaudible).

Kathleen: I wasn't part of the planning of the logistics, so I'm just going to give them the opportunity to add when they hear our ideas, okay? Okay, so go ahead, wherever you are interested in starting. I'm going to hand out-actually, could you help hand out markers to each of the groups, please?

[Extended break]

Kathleen: [01:18:58]

So you've got about four minutes, then we wrap up.


In the next two minutes, think about who's going to speak to them, okay? I'm going to ask one of you to go through it with us.


Okay. I'm going to ask the WebEx people to kind of get organized. We're going to report on our work. And I'm going to ask you all to sit down and someone to close the door, please. And we are preparing some artwork.

[Talking over each other]

Kathleen: Okay. I know. How about I hand you guys the mic first then? Okay, so let me just tell you guys what's happening this afternoon, okay, so we're all clear. This afternoon, Dan is going to give each of us facilitators five to seven minutes-and he's tough on time-so I'm going to try to say what we want to say in that amount of time. So I'm going to start by talking about-you know the first thing we did, which is vision? Here, if we're successful, these are all the things we will achieve, and then I will say we talked, we worked by audience, and here are highlights of what we said for each of the audiences, okay?

Here's the thing I want you guys to keep in mind. Dan then is going to open the floor to anybody. So, obviously, I won't be able to say everything in my five to seven minutes, so that's your opportunity to either reinforce something that I didn't quite say well or that I didn't say because I only have so much time, as well as for all of your colleagues who aren't in this room to add, right? And then you'll have the same opportunity for the surveillance group and for the best practices group, okay? So that's how we're proceeding after lunch. Yes?

Female: [01:23:23]

Does a copy of all of these-thanks. Does a copy of all of these things we wrote out go to someone so they can actually formally write them down?

Kathleen: Absolutely.

Female: Okay, thanks.

Kathleen: Yeah, it will form a part of a report. So people here are taking notes; that's been their job, to take notes.


Okay, so here's what I'm going to suggest. I'm going to-we'll start at that end of the room. I'm going to ask one person to kind of quickly walk us through the content, and then I'll invite the rest of you, including those of you joining us by WebEx, to add, okay? If there's something important missing.

Female: I'm being nominated.

Kathleen: Are you being nominated? Okay.

Female: [01:24:05]

Thank you. Thank you very much. So we were tasked with federal and provincial parliamentarians, and we were trying to stay really focused on what Elizabeth May has been very successful with her private member's bill on getting the framework established, but it's just about establishing the framework and there's a mechanism for a five-year review.

So building on that, we thought we would try and see if we could have a recommendation around a Canada-wide strategy for Canada's health ministers. So this is all your provincial and territorial health ministers that get together once a year, and that they would develop a strategy on Lyme disease and co-infection prevention, awareness, and surveillance. And so, the idea is that when they get together and meet, all their deputy ministers are then tasked to come together with various sub-working groups, and then those working groups would go forward to try and develop strategies, and this would help with the coordination across the country.

Then we also had an idea about having a law, a provincial law, to protect physicians, clinicians, and naturopathic doctors. Have I got that right? Okay. Willing to treat LD, CLD, and co-infections based on the ILADS guidelines, and my colleague there from New Brunswick was very passionate about that. And this would help provide some protection to the physicians who are trying to actively prevent or help prevent and diagnose and treat patients. Okay.

Also, we thought maybe in order to keep the momentum going, that we would ask the Health Committee at the federal parliament. Health Committee is made up of all the parties, and they often have studies. So this would go to the Health Committee and we would ask them to do a study on Lyme disease, prevention, awareness, and surveillance, and report on C-442, which was Elizabeth May's bill, instead of waiting for five years to go ahead and do their own review, that we would use it as a mechanism to keep the momentum going. And people can come and provide testimony during those studies, and this would probably need to be provided by your association, a request to do the study, but I'm sure there's lots of other people here who will be willing to participate and send in letters to request that.

We also want to educate parliamentarians with factual information so that they can Tweet out on social media, so that factual information. And then, we had another request to access care and treatment and to draft legislation, the current draft legislation that hasn't been tabled yet, for medical marijuana. And that is what we have.

Kathleen: Okay. Comments, questions, things to add? And here we go. Let me add you the mic.

Female: [01:26:48]

Sorry, I hadn't gotten to that board yet. But I think it's really important that we tie funding to what's happening. For example, we're developing a federal framework. I assume the federal government is going to give a significant amount of money out to the provinces, so if they somehow tie in that funding to making sure that what the provinces do is according to our federal framework, rather than just saying, "Well, we're going to develop our own program with IDSA guidelines because we know what we're doing," that whatever funding we give is tied to the framework.

Kathleen: Okay, alright, so we're adding that comment. Any …?

Female: [01:27:25]

I think you want-sorry, can we add it in addition to the framework? Because the framework has already been funded, so I think you want additional funding, do you not?

Female: Right.

[Talking over each other]

Female: [01:27:35]

Yes. Yeah, whatever money is given, there's federal transfer payments, and so if they tie any transfer payments for Lyme awareness or that comes out of this, tie it to that the provinces must be working alongside the federal framework, not doing their own thing.

Female: Oh, okay. Okay.

Kathleen: [01:27:55]

Okay, so let me ask those of us joining via WebEx. Operator, can you see if there's any comments from our virtual participants?

Operator: Certainly. Thank you. Please press *1 at this time if you have a question or comment. There are no comments registered at this time.

Kathleen: Okay, thank you so much. What I'm going to do is I'm just going to highlight the things I will report on, okay? Because I'm going to have to do that pretty quickly.

[Talking over each other]

Kathleen: I'm just not used to this kind of help, you know? I mean, it's like, "Wow!" Okay, so Canada-wide strategy for Canadian health ministers on Lyme disease, co-infection, prevention, awareness, surveillance. Basically, I mean, you guys only did do the big elements, so I think it would be all of them. To do … Right, it's only when there's lots of detail that I won't be able to do lots of detail. Now, access to care and treatment, again, how do I make that understandable to everyone? Can you …?

Female: [01:28:56]

It was a specific request. We're trying to figure out a way to amend the draft legislation for medical marijuana that's being proposed, and so that there would be care and treatment, but also I guess coverage for medical marijuana for people with Lyme disease.

Female: [01:29:14]

(Inaudible) and also to prevent people from having to go to the U.S. for care.

Kathleen: Okay.

Female: So to have the access to that care.

Kathleen: Okay, so I will maybe just … Thanks to the good edits from my colleague here and additions. Okay, hang on a second?

Female: [01:29:35]

Yeah, I just wanted to mention about the medical marijuana, we get a prescription and take it as it is an antibiotic, let's say, but we do have to pay for it. The access is, well, it depends on who your doctor is, is not impossible. The access is not impossible. It's that we pay hundreds of dollars, plus tax, for our cannabis, our medical cannabis, so it's financially-oriented.

Female: Not even a free access.

Kathleen: Free access.

Female: Free access!

Kathleen: Alright, let's put free access.

[Talking over each other]

Female: (Inaudible) identification.

Kathleen: Okay, we would like … We would like a DIN number, okay.

Female: And a tax receipt.

Kathleen: And a tax receipt. Are you getting all of that? Okay. And again, guys, I mean …

Male: Tax receipt is listed already.

Kathleen: Okay, guys, hang on a second. Again, depending on how much detail there is to report, and I've got seven minutes to do the whole thing, I may not be able to report on all of these things. But again, Dan will open the floor and if there's something that you really want out there, that'll be your opportunity to say it. Okay, and then we've got to move on to the next one.

Female: [01:30:43]

Okay. I'm asking provincial and federal ministers of health to create an emergency strategy for what's going to happen between when this report and framework gets created to when doctors are actually educated in how to treat Lyme disease. So we need an emergency strategy. I'm calling for something in the next …

Female: (Inaudible).

Female: For four weeks, four to six weeks. I've talked to Elizabeth May about this and other MPs, but I'm asking for something specific. It's an amendment …

Female: (Inaudible).

Female: No, it's an amendment to the Health Insurance Act. That's our way in. And amendment to the Health Insurance Act would allow out of country coverage. Right now, it discriminates against Lyme patients. No one in Canada has been able to get out of country coverage.

Kathleen: So the message, though, that you want me to report on is …

Female: Is emergency strategy.

Kathleen: Emergency strategy.

Female: Amendment to the Health Insurance Act so patients can get out of country coverage and funding immediately.

Female: For treatment.

Female: Immediately.

Kathleen: So, did you get that wording? Okay, okay. Okay, so we got that. Okay, we got to move on.

[Talking over each other]

Kathleen: And again, keep in mind that you guys will have a voice in plenary as well. Okay, let me just get the group's attention back. Okay, again, one of your colleagues is going to speak. I'm just going to ask, one conversation at a time. Go ahead.

Female: [01:32:05]

Okay, so we did medical, veterinary, etc., and I'm sure we've missed people. Paramedical, pharmacists, RNs, RPNs, acupuncturists, nutritionists, TCM practitioners. What's that?

Female: Traditional Chinese medicine.

Female: Traditional Chinese medicine, okay. And dog groomers, which is a group-functional medicine? Okay, but dog groomers we didn't think about, and horse. Dog people that do …

Female: Dog groomers!

Female: Dog groomers, yeah, okay. And so, number one, so the question was how should our education/awareness goals, what should our education and awareness goals be? Key message. So, how to remove a tick, how to treat a tick. Visuals of different rashes, and get the message across it's not always a bull's-eye. Symptoms to watch for, antibiotic guidelines after tick bite, up-to-date information, need for referral to a Lyme-literate doctor, and a lot of stuff was crossed out because none of the specialists seem to be Lyme-literate at the moment. So, and/or specialists, but we need a database of Lyme-literate doctors because people are not finding doctors that are literate.

So number two, best ways to reach them. Compulsory continuing medical education via webinar so people all over the country who don't have access to meetings like this, and it probably should be updated regularly because the situation is going to change dramatically with global and as the ticks move further north.

And then journals, educational and professional journals, fairly brief summaries, and references they can go to. So, CMAJ Journal, Canadian Pharmacists' Journal. There's a Sanford's infectious disease handbook that comes out, I think every year or two, which is really good but it's American. So framework up-to-date to say that they must revise their guidelines according to the National Guidelines Clearinghouse. The IDSA is not revised since 2006. People need to be aware of that because they're using guidelines, they're told to use guidelines that are out of date.

And, okay, now we're into critical success factors. American prescriptions should be honoured. Doctors should just rewrite them and sign off on them if they don't know what they're doing-being a little biased here. So basically, our success factor, every family doctor would know how to treat tick bites or Lyme symptoms and would warn their patients about vaginal/seminal secretions and in utero transmission. People need to be made aware of that because a lot of us weren't aware of it. And, yeah, some infectious diseases doctors are not or are Lyme-literate, so-and I'm thinking maybe, especially in northern areas where they don't have access to doctors, there should be other people able to prescribe antibiotics, so naturopaths, pharmacists, RN(EC)s. There's a whole bunch of groups of people who could be educated to prescribe antibiotics under the doctors' guidelines.

Kathleen: [01:35:01]

Okay, let me ask if there are others that would like to comment or add. And as well, Operator, do you want to see if there's someone on WebEx that would like to make a comment at this point?

Operator: Certainly. Thank you. Again, please press *1 at this time if you have a comment or question. There are no comments registered on the phone lines.

Kathleen: Thank you. In this room, anything to add? So while you think, again, I'm just sort of-so I'm going to talk about the fact there's a whole group of people we're talking about here.

Female: And we're probably missing some.

Kathleen: And we're probably missing some, and I won't go through the whole list, but I'll give a few examples to give the idea that, you know, these are the basics of what we want included, right, in the messaging?

Female: [01:35:53]

I think we did, too, but I mean, it's got to be a message that the framework develops that we're part of. So I don't think we have to go through everything. Like, it's just got to be the correct message.

Female: Tick message (inaudible).

Female: Tick messaging that patients and all stakeholders decide during the framework, so I don't …

Kathleen: Okay, just write in tick messaging for me and that's what I'll circle, yeah.

Female: So I don't think we need to go through and save time.

Female: Yeah, no, that's good. That's good.

Female: Save time.

Kathleen: Yeah, absolutely. So, tick messaging, okay. And then, the how-to, compulsory continuing medical education webinar yearly, and then education in-and I won't give the examples, but a lot of journals, the relevant journals that reaches people. And is there another key message in here that …?

Female: Refine the guidelines to the National Guidelines Clearinghouse.

Kathleen: Here?

Female: Yeah.

Kathleen: National Guidelines Clearinghouse.

Female: And UpToDate, sorry.

Kathleen: UpToDate, okay.

Female: Yeah, UpToDate is a website.

Kathleen: Hang on, she's got the mic.

Female: [01:36:59]

UpToDate guidelines, but also recognition of chronic Lyme disease, which IDSA does not recognize.

Kathleen: Recognition of what? Sorry.

Female: Chronic Lyme disease.

Kathleen: Ah, okay, okay. So including the chronic, right.

Female: So that's why patients have to go out of state, out of Canada, in the States, to get treatments, because chronic Lyme disease is not recognized, and that's why the insurance companies won't cover for long-term disability.

Kathleen: So I'll put that in a highlighted bubble. Go ahead.

Female: [01:37:31]

But what we're saying about up-to-date, UpToDate is the most website. Every medical student, most doctors that I know of have a prescription and that is their only go-to when they're in the office and they say, "What do I do with a tick bite? What do I do with erythema migrans?" They immediately log onto UpToDate, which is a specific website.

Kathleen: Oh, I didn't get that.

Female: It is a specific website, UpToDate.

Kathleen: Okay.

Female: And the reason I'd like the framework to write to them is many of us individually have written to them saying, "Your guidelines are out-of-date," but they're still sticking to the 2006 IDSA guidelines.

Kathleen: Okay.

Female: So we as a framework write to them to (inaudible).

Kathleen: Got it, okay. Good. Okay. Okay.

Female: (Inaudible).

Female: (Inaudible) the pharmacists can access it for you.

Kathleen: Okay, so it's not free. Pharmacists can access.

[Talking over each other]

Female: Most of us get it for free.

Kathleen: Oh, many do get it for free.

Female: Doctors do.

Kathleen: The doctors do.

Female: And everybody uses it.

Kathleen: And the doctors that do get it free do use it. Okay.

Female: Many times a day.

Kathleen: Okay, so I'm going to suggest we move on. We good? So who's going to say something about the public? This was the one about the public at large. Okay, here, let me hand you this mic.

Female: [01:38:45]

Sorry, we did two groups, so …

Kathleen: That's okay.

Female: Or two different forms. So basically, the first thing we were talking about, this is public and Canadians in general, awareness of the broader definition of Lyme and all co-infections, being the great imitator. Making sure we're all aware of signs and symptoms of infection so we can prevent, you know, further problems. General awareness of the risks of tick bites. A lot of people just don't seem to know that, and this is something the general public really needs to know. Also, proper removal. And I know we wrote over there on the outdoor enthusiasts' area, the CanLyme kits would be great to have available in schools, in camps, basically anywhere you can think of that you're going to be outside, enjoying the outdoors.

Kathleen: Mm-hm, what's a CanLyme kit?

Female: The Canadian Lyme Disease Foundation has little tick kits with the G. Magnotta Foundation, and they include three different tick removal devices, although two of them are kind of controversial because they're the tick twister. But one of them is the one with the long tweezers and it's got a little magnifying glass on it, plus they have little containers for tick identification, sending it in for testing, plus a tick identification card. Yeah.

[Talking over each other]

Kathleen: Antiseptic wipes, okay. Okay, they will send them to you.

Female: By the way, it's cheaper and …

Kathleen: So they're cheaper by the dozen or the hundreds. Okay, let's get back. Okay. Continue.

Female: We need a National Lyme Awareness Day for the general public.

Kathleen: Oh, that's a good idea.

Female: National Lyme Awareness Day, like May 1st. May 1 st should be Lyme Awareness Day.

Female: Or whenever ticks are out.

Kathleen: Okay.

Female: We need to be aware of the risks of migratory birds and animals, sexual transmission and in utero transmission; I think you guys had that over there also. To get the best ways of reaching them, is media. So we're talking TV, papers, radio, signs, magazines, social media, Facebook, Snapchat, Twitter, ads on buses, public transportation, billboards, school education, everything.

Kathleen: Mm-hm.

Female: And then three, what are the critical success factors? General awareness. Just everybody knowing what happens when you get a tick, when you find a tick on you, how to remove it, and how to get prophylactic treatment from the doctor.

Kathleen: Mm-hm, okay.

Female: And how to know it's a tick.

Female: And how to know it's a tick, tick identification, so kids really need to be learning this young.

Kathleen: Okay, things to add now. General public. Yeah, hang on. I'll just hand you the …

Female: [01:41:23]

I love the idea about the Lyme Prevention Day. I think it's excellent and I think it ties into what we were talking about a little bit over here with parliamentarians. You were asking about what MPs could do. If we had MP support for having that day, that would be-so we could add that to the list.

Female: Because they could sponsor it, yeah.

Kathleen: [01:41:39]

Alright. Okay. Anything else? Any other comments? I'm just going to-and Operator, I'm going to ask you in the meantime to see if there's anyone on WebEx that would like to add.

Operator: Certainly. Thank you. Again, please press *1 at this time if you have a comment or question. There are no comments registered on the phone lines at this time.

Kathleen: Okay, thank you. Okay, I probably will just say multimedia, you know? And I won't necessarily go through the whole list.

Female: (Inaudible).

Kathleen: Exactly. Okay.

Female: (Inaudible).

Kathleen: Hang on, I have to hand you the mic.

Female: [01:42:25]

Talking about the media, like, you know how Bell Canada does that amazing initiative for mental health?

Kathleen: Yes.

Female: And then you've got, like, celebrities who are endorsing it. If we get a key sponsor and then have-what's that?

Female: (Inaudible).

Female: Yeah, or maybe Avril Lavigne, a Canadian.

Female: Yes.

Female: A champion.

Female: A champion, and then because, you know, that's really a catchy-you know, has a great hashtag, and everybody gets involved. And it raises money.

Female: Yes, Avril Lavigne.

Kathleen: Okay, so we should probably tell her at some point that she's been …

[Talking over each other]

Kathleen: Yeah, maybe celebrity champion, if you write that down. Okay, so, and I'll just do that while you finish. Okay. Again, let me just continue on because we're not even halfway through yet. Okay, public health agencies, FTP, can someone speak to this?

Female: [01:43:18]

So what we wanted to make sure is that when public health agencies post their guidelines, that they reflect what the framework says and are not just posting the IDSA rules, and understand that existing IDSA guidelines are limited and dated; they're from 2006. Public health agencies to acknowledge that every province has Lyme. Public health agencies … Let's see, a mechanism to ensure information is delivered to provinces, regional, and to make sure that the implementation is ensured and monitored and evaluated yearly.

We talked about having access to advisory specialists, and one example is the RACE Line in British Columbia, which is Rapid Access to Consultative Expertise. It's a phone line that we can call whether we want a gynecology opinion, a neurology opinion, anything like that.

We need a time-based billing code for these complex patients so that doctors will spend the time with them and be paid for it. We talked about paying doctors to attend accredited learning sessions online. There's a practice support program in British Columbia that actually, when they identify mental health as an issue, they pay doctors to sit there and learn for nine hours. They talk about mandated learning of basics. I don't know that you can mandate a doctor to learn anything, but you can entice them with payment, frankly.

Female: And free food!

Female: And food, and good food.

Female: (Inaudible) will go anywhere for free food.

Female: We talked about having public health agencies hire summer students to educate the public. That would be a really good way of disseminating information.

Female: And they learn while they're teaching.

Female: And they learn and they can spread it out to their colleagues. Making sure public health agencies do regular surveillance and dragging, and suggested having a yearly conference for Lyme and tick-borne infections so that everybody stays really up-to-date with the current literature. Making public health agencies aware of … I guess I wrote down IDAS guidelines, but I would say the guidelines that are on the National Guidelines Clearinghouse.

Female: Yeah.

Female: Yes. And protection for treating doctors. Don't know if the public health agencies can do that or not.

Kathleen: That probably would have to go under parliamentarians, eh?

Female: Yeah, I think so.

Female: (Inaudible) probably under our colleges.

Female: Yeah, okay.

Kathleen: Okay?

Female: [01:45:52]

Active blood tests after being diagnosed with tick-borne infection to make sure that it's been eradicated before blood gets in the bank, before giving blood.

Female: Oh, yes!


Female: Because I am legally allowed at this moment to give blood in Canada.

Kathleen: Mm-hm!

Female: It's a scary, scary thought.

[Talking over each other]

Kathleen: Okay.

Female: [01:46:17]

As well as organ donation.

Female: Yes.

Female: Because I myself am an organ donor and I had to argue till I was blue in the face, and I am still not off the registry for organ donation. My husband and my family know my wishes, but if I were to get in a car accident and nobody was around, they would donate my organs.

Female: And these are really (inaudible) because you have to get the family's approval.

Female: Okay, even if it's on my licence and everything? Okay.

Female: Yes, your family has the final say, so it's not a worry.

Female: They wouldn't remove me.

Female: No.

Female: Because I had treatment for 30 days, she said I was cured.

Female: Yeah.

Female: I was fine to continue to donate, and they would not remove me from that registry.

Female: No.

Kathleen: Okay, we'll make a point of saying that.

[Talking over each other]

Female: Yeah, that's huge.

Kathleen: Okay, and very quickly, because we're running out of time.

Male: [01:47:01]

Sure. I think public health units do a lot of education on sexually transmitted diseases, but I don't think they include Lyme as even a possibility. And if we're-you know, that's a great resource to take advantage of. Like, my sister is a public health nurse and she talks about AIDS all day long. And I mentioned to her about, you know, about Lyme being possibly sexually transmitted. Well, and she had no clue, and this is someone who does this for a living. And you know, I think if we can get that sort of on their radar and on their list, that's something that can go out …

Female: (Inaudible).

Male: Yeah, yeah.

Kathleen: Okay, one more comment for now, and then we'll move on.

Female: [01:47:48]

Some clinical nurse specialists could work at the public health level to do a lot of education to other nurses and even physicians.

Female: And the public.

Female: And the public, of course. But I mean, I think it's-there is a big lack in our health care professionals, and we need to target there right now and now and …

Kathleen: Okay, good. I think that when we talk about the sexually transmitted issue, we should show that poster, right?

[Talking over each other]

Kathleen: Okay, and briefly, because I got to move on.

Male: [01:48:27]

Sorry, just as a bit of a follow-up on that, and I think the possibility of transmitting to an unborn baby is a super powerful message. That's the reason that Zika has become such a huge deal, is, "What about the babies? What about the babies?"

Kathleen: That's good.

Female: Research.

Male: And there's research that says it happens.

Kathleen: So we should maybe add that one to media when we get to it.

Female: Yeah.

Female: Yes.

Kathleen: Okay, alright. Let's go to the one over here, which was patients. So can someone speak to what ended up on that board?

Female: (Inaudible) the writing on there.

Female: I started it. I guess I will (inaudible).

[Talking over each other]

Kathleen: Take your time.

Female: We're just having issues with the group moving. This too shall pass.

Kathleen: Yes, indeed. We hope.

Female: It's on?

Kathleen: It's on.

Female: [01:49:19]

Okay. Okay, so we're talking about patients. And what we really need is immediate treatment and support. So we need organizations that will help understanding of patients' needs and limitations. We need financial assistance, so that would include CPP, welfare, with medical coverage. Dental coverage.

Female: Oh!

Female: Because let's face it, Lyme disease patients have horrible teeth. Prescription help, and under that we have a lessening of paperwork. Advocate assistance, patient assistance to doctors for appointments, etc. We put down transportation assistance. You know, if you have cancer, you can get a ride. Yeah, okay.

So, support groups. We need paid leadership and I guess that says training, sorry. Information to doctors. Oh! Information available at doctors' offices such as pamphlets.

Female: Yeah!

Female: Because you know, you sit in the waiting room and there's pamphlets, right? Well, not here. Okay, not about Lyme. So that was training, sorry. Support groups training. Right, okay. So, and also at pharmacy and vet locations, they should have these pamphlets available.

Patients' oral health assessments. Okay, yeah, I guess that was covered up here under dental.

Male: (Inaudible) it says overall.

Female: Overall.

Kathleen: Okay.

Female: It's okay. What can I say? I'm glad you're on top of this. Okay, out-of-pocket expenses covered. So we're talking about reimburse patients for travel out of country, for travel long distance, and what about our supplements?

Female: Yes.

Female: It's on.

Female: I mean, yeah, oh, that's probably on here, so it is, next. Sorry, I wasn't paying attention. Supplements, complementary care as required for treatment, including naturopaths, chiro, IV, osteopath; the list goes on and on and on. But anything you can think of that would help us, right?

Okay, so success factor. Financial burden lifted from patients. Yay! Follow-up, implementation, yearly conferences. Yeah, we need that. And U.S. prescriptions covered. Okay, and then, you know, there's a whole pile of things, but that's what we have written down, so thank you.

Kathleen: [01:51:43]

Excellent. Thank you very much for reporting on that. Things to add? And also, while people think in the room, let me ask the Operator. Do you want to see if someone via WebEx has something to add?

Operator: Thank you. Once again, please press *1 if you have a comment at this time. We do now have a comment from Tatiana Guzman. I do apologize, they have cancelled their comment. So once again, please press *1 at this time if you have a question or comment.

Kathleen: Anything?

Operator: There are no comments registered at this time on the phone lines. And I'm so sorry, Tatiana Guzman has re-queued, so please go ahead. Your line is now open.

Tatiana: [01:52:24]

Hi. Sorry, I wanted to mention that when talking about outdoors groups, to include Scouts Canada and other scouting groups. Like, there's Ukrainian Scouting, Italian Scouting, Polish Scouting. So to be able to access all those leaders and the youth.

Kathleen: Mm-hm, for sure! Okay, we're adding it to our flip chart on recreation and outdoor enthusiasts. Thank you.

Tatiana: Thank you.

Kathleen: Anything else from WebEx?

Operator: Thank you. We have another comment from Joanne Rajguru. Please go ahead.

Joanne: [01:53:02]

(Inaudible). Will this information be available through the Internet or through-a review of everything that's happened the last couple of days, even by email?

Kathleen: Will the information be available from the conference? So, yeah, so what's going to happen is all of this is being recorded and people will have access to the recording. And of course, we are finding ways of getting all the presentations, for which we have permission from the authors; we're going to be sending those out or making those accessible as well. Okay?

So, anything to add on patients? Yeah?

Female: [01:53:51]

I just had one more question. I'm not sure if it was already mentioned, but just counselling. I think we all have gone through a very traumatic event and we need more support than that.

Kathleen: Right.

[Talking over each other]

Kathleen: Okay, yeah, a few more quick comments because we're definitely coming close to the end.

Female: [01:54:12]

We could use some brain scans, like SPECT, and actually neurologists who will look at SPECT scans. Mount Sinai has them for a reason. They're not spending thousands of dollars on equipment that means nothing. And PET scans.

Female: So where could that go?

Female: I think it's on there.

Kathleen: It's on there? Okay, go ahead.

Female: [01:54:32]

So concerning yearly conferences, I wonder if a good, like, immediate ask would be for the public health agency or the government, whomever, to fund a patient-led conference on, you know, diagnosis and treatment of Lyme disease.

Kathleen: (Inaudible) suggestion. Patient-led, patient-centred conference. Okay, one, two, three.

[Talking over each other]

Kathleen: I'm going to let-we'll put both and some of you might prefer patient-led, some of you may prefer patient-centred. Last comment before I go to the next board.

Female: [01:55:10]

I just want to add on a yearly basis for the conference.

Kathleen: Okay, good. Thank you.

Female: We want you to be our moderator.

Kathleen: Oh, you guys are so sweet! Thank you. Okay. Kids in school. Who can talk about that?

[Talking over each other]

Kathleen: Yeah!

Female: [01:55:35]

First of all, we want to eliminate contraction from the very beginning. Let's teach them; let's not get it. Schools have smart boards. Utilize the smart boards. Every school in Canada has a smart board. Have a tool, have a device that a teacher can access on a specific day in May or when ticks are out, and educate the kids, Canada-wide.

One way to get to the kids immediately. Age-appropriate. Anywhere from a five-year old to a nine-year old, they don't learn the same. So a child at the age of five has to be more like maybe a cartoon or a commercial, where a nine-year old, you can get a little more into detail because we don't want to scare them; we just want to teach them.

One way to do it is art walls at school. Commercials. Cute commercials for the little kids on TV. Roleplay. Ask a kid if he comes in with a tick, what the next kid would do. Who would they tell? Just little things like that.

Who is reaching them? Who reaches our children? Teachers, coaches, guiders, 4H, EAs, parents, doctors, school nurse, ECE, principals, after-school activities, coordinators.

Female: Secretaries.

Female: And secretaries. Early childhood educator. We are the people that reach our children every day.

Feed off of existing research. Go to the U.S. That's where I got that little art wall thing, from Connecticut. Places that are already endemic, find out what they're doing to teach their kids. We don't have to spend big bucks on this. We just have to open our Internet.

Every school should have a tick kit. Every school. We also talked about having a t-shirt day, like we have an anti-bullying day. So maybe on May 1 st, if we get a Lyme Awareness Day once a month, we take the t-shirts, the kids wear them. We can buy a t-shirt for Lyme disease; the money goes back into the schools. It's a great way for a school to make cash, as well as a kid to be educated.

Educate, teach; don't scare. We don't want to scare kids from playing outside. We want them outdoors.

Newsletters sent home is a good way for a parent to get through to a kid.

Female: Lime green newsletters.

Female: Lime green newsletters? Sure. Maybe during the really-if we're in an endemic area, suggest to the parents that the kids don't wear open-toe shoes, you know? Suggest that maybe on those times when they're in the play yards, have them dress like they could contract Lyme disease. Make a parent aware of that. Sell t-shirts, a good way to notify parents. If a kid is bit at school, a parent needs to know. Seek professional help with the bite and the letter. So if a kid is bit at school, you see the tick bite, send home a letter saying, "Your child had a tick on them today. Seek help immediately."

[Talking over each other]

Female: No! I think-I'm sorry …

Female: Or phone the parent.

Kathleen: Okay, hang on. Hang on. You need to use the mic.

Female: [01:58:38]

Sorry. I feel it has to be immediate. They have to realize how very serious this is.

Female: Yeah.

Female: And if it can't be the mother or the father, then the vice-principal or the principal-because the teachers aren't allowed, no-but the vice-principal or the principal goes right then, right there, to the hospital.

Female: Yeah.

Female: Or, if there is one.

Kathleen: Okay, and there's another comment here. Hang on.

Female: [01:59:04]

As a mother of three, I don't care what teacher is trained: no teacher is removing a tick from my child, because if they remove it wrong, they don't-it's got to be a nurse or a doctor. So like you said, they can call the parent. You remove a tick from a kid, you don't get it all? You're going to get a lawsuit on your ass.

Female: (Inaudible).

Female: So it cannot be a teacher. It has to be someone who's qualified. They don't have nurses in schools anymore.

Female: No.

Female: So the parent needs to be called or they need to be taken to the ER.

Female: The ER, yeah.

Kathleen: Alright. Okay. A few more comments, or maybe one more comment, and then we move on.

Female: [01:59:37]

I just think we need to ensure that school boards have policies written about ticks and Lyme, tick-borne disease.

Kathleen: Yeah.

Female: And ministries of education have a ton of power to be able to really educate the provinces and territories, so that needs to happen as well.

Kathleen: That's certainly a tool.

Female: Yes, it's good.

Female: [01:59:56]

I didn't get a chance to get over there earlier. I was busy on the legislative stuff. I think these ideas are really great, and you know, I think one partner that's missing is industry. You know, we have tools, we have mechanisms, we have social media, and we have Twitter, or companies who can be actively involved in this process. And I think that one of the key things is the social media piece for the kids. You know, YouTube is just …

[Talking over each other]

Female: Yeah, absolutely, YouTube is huge for the nine-year olds. So, yeah.

Kathleen: So use the media that they are on. Let me just ask the Operator to see if there's anyone on WebEx that wants to add.

Operator: Thank you. Once again, please press *1 at this time for any comments. There are no comments registered at this time.

Kathleen: Okay. There is a comment here. Thank you, Operator.

Female: [02:00:49]

The syllabus, what the children learn in school, like the phys. ed. teachers are responsible for the health part. It should be included in there.

Kathleen: In their syllabus, okay. And then (inaudible). Okay, good? We've got two more to go. This one was media. Right, so who's going to speak about media? Can someone just quickly fill us in?

[Talking over each other]

Female: If you want to.

Female: Okay.

Kathleen: I think you're on.

Female: I guess I'm on.

Kathleen: You're on.

Female: Okay, if I could-oh, I need my glasses.

[Talking over each other]

Female: [02:01:30]

Alright. So when we went through media and the message providers, we said that we want, first of all, the information to be what we know is correct today. So we want the factual stuff in the message, however we, you know, send it out to the media. So we want to make sure patients are involved in that message before it's delivered. No misinformation. Now, I know we don't have all the facts and some things are speculative, but we need what we do know to be the correct information in the message. So you know, things such as ticks are here in Canada and when you travel abroad, that those are issues. There's a variety of symptoms, and list some of the key symptoms and the fact that Lyme is, you know, the great imitator, as was mentioned. A lot of this stuff was mentioned already, but I'll just quickly go through what we have.

Acute versus chronic. The EM rash and flu-like symptoms. You know, signs and symptoms to look for, not just actual long-term symptoms you could get, so immediate things to watch for in your children and so forth.

The clinical diagnosis. Make sure that message is loud and clear, that it doesn't have to be the blood tests and that sort of thing. Photos of the ticks, obviously. And I like to say-I don't like to use the word "Lyme" so much as tick-borne illness because we are looking at the whole picture here, not just Lyme.

Female: And (inaudible) ticks.

Female: Yeah, so it should be delivered as tick-borne, you know, infectious diseases. That the risk is all-year long, we mentioned. Proper removal of the tick. And again, as mentioned before, there's some controversy in that area. So, you know, how are we going to get that message across as best we know now, today? And then update if it any changes of new information come out. Tick checks. Prevention. You know, the white socks, light-coloured clothing, that sort of thing, in the message.

I can't read that. If you were bit, go … Oh, if you're bit, go to a doctor. Again, don't wait for symptoms. Again, I agree with-being in the field of-I work for the federal government, and we have-and I was one of the health and safety coordinators for our office. You don't take chances. You call an ambulance. And wherever you are, if you're at school, that should be paid for so that the people can, you know, get immediate help from the professionals.

Now, I understand that the professionals have to be told how to do-that's a step, you know? But when that happens, it has to be done correctly and the money has to be spent to get them there.

Okay, and then for part two, the best way of reaching them, we said, again, media release, commercials. Social media is a huge tool obviously for younger people, especially, but there's all ages now using media. Radio, news. We want it to be a catchy marketing plan, something that grabs people's attention, because as we discussed, a lot of people don't pay attention unless they know someone that's had Lyme or they have it themselves, and so they're just going to flick the channel or turn it off. So again, bringing it back to someone like, you know, Avril Lavigne, to use an example, somebody who, you know, people already know maybe is infected that has a bit of a famous face to deliver the message in, say, a TV-type commercial. Or a catchy slogan, and again, for kids, incorporating some of the other things that were said here.

A focus on a campaign every year in the early spring. We talked about-someone wrote on about, again, the sexual transmission of it. And I know there's a lot of evidence that, you know, still needs to be-but I'm a true believer of that, so it's a passion for me that people shouldn't be going-you know, even though we don't know the true answers exactly, that they shouldn't be going out and, you know, spreading this around!

So number three, I think that covers most of it. Marketing plan. Oh, we talked about fear. Although I agree that you don't want to scare children, you want people to play, you want people to go outside, you want people to hike. With the Zika virus, I mean, the fear is what got people to pay attention. And so, if people aren't paying attention, you know, we talked about the fact that there may be-there needs to be a little bit of fear, or it needs to be like, "Did you know this could happen to you? These are some of the things that you could end up with if you don't take this seriously." So it's going to be about finding the balance for that.

And then the third part, what would the critical success factors be? So we said seeing the pattern of people sharing the message. People, you know, we'll see that people are aware because they'll be sharing it more on social media, they'll be sharing it at their offices. And again, how you monitor that will be a variety of ways.

Seeing all the media outlets do this. Do you remember what we were talking about there?

Kathleen: Well, that would be a sign of success, right?

Female: Like … Yeah. Oh, yeah. Absolutely. Yeah, finding-sorry, my brain. So, yeah, seeing that things are, you know, moving forward and we see a campaign come out. I mean, that's part of the success and we start seeing that.

One other thing, someone mentioned about the industry. Well, I'm thinking like, you know, having corporate sponsors that are-that's their, you know, how a lot of industries just pick a couple things that they're going to be a part of. And then the official message, when that's being delivered, we want it to be from an official site that then people can go to websites. Like, say it's on a TV broadcast, then they can go to the websites and make sure they're getting the most up-to-date information versus a variety of misinformation being sent out there. So, yeah.

Kathleen: [02:07:22]

Right. So you know, that was a five-minute-you took five minutes there.

Female: Did I take too long? Sorry.

Kathleen: No, you didn't.

Female: Okay.

Kathleen: But the point is I won't be able to go through all of this, okay?

Female: Okay.

Kathleen: I just want to set expectations.

Female: And a lot of it was repeated. So, sorry.

Kathleen: Yeah. Okay, and wasn't that about transmission to …?

Female: In utero.

Kathleen: In utero. In utero, thank you. So we'll add that transmission to babies.

Female: (Inaudible).

Kathleen: Oh, is it already there somewhere?

[Talking over each other]

Male: It's on the (inaudible).

Kathleen: Okay. Oh, it's on the other one? Okay.

Female: (Inaudible).

Kathleen: Oh, you need a microphone. I'm sorry.

Female: Excuse me, sorry.

Female: [02:07:57]

So I know people end up with canes, wheelchairs, and dead, and I think that needs to be gotten across to the public, that this is a serious matter. I mean, doctors are having patients die from this, so we have to take it seriously.

Kathleen: Okay, a few more messages.

Female: [02:08:13]

I just want to add on, because I know a lot of people think that Avril would be a good person, but it actually would do you a disservice. One, we've already asked her to advocate for you and she won't. Two, I think you'll make more of an impact if you show somebody in a wheelchair, you show a coffin, you show a real Lyme person, and then it brings it home. And you show a baby that dies in stillbirth because the mother has contracted it or that they've had a sexual partner. So I think your media message has to be very careful.

Kathleen: Okay, and …

Female: So I would take Avril off your list.

Kathleen: And we're not going to choose someone right now, okay? We're not going to choose someone.

Female: This is brainstorming.

Female: I know, but I want you to know because we tried (inaudible).

Female: [02:08:47]

I agree, because the only thing, people who knew nothing about Lyme, didn't really care, except that it's involving me, or whatever, but when Avril Lavigne had Lyme? "Wow! Arlene, did you hear?" Yeah, so these people are kind of … They come and they go. They fly by the seat of their pants (inaudible).

Kathleen: Okay, last comment before we hear the last group.

Female: [02:09:11]

I think it's wonderful, the process we're going through here. I guess my concern is long term, and we haven't really talked about long term. So how do we know-is there a process? Is there a committee? Is there something in place that when we take these ideas to, they get checked, vetted, started, assessed? How do we know the media is working? How do we know people are making changes? So I think we need to have kind of a beginning, a middle, and a constant reassessment.

Kathleen: (Inaudible) because that's kind of like even beyond just this theme. It's for all three themes, right?

Female: Yes.

Kathleen: Okay. So let's just hear about the last one, which was-oh, the recreation and outdoor. Can someone very quickly give us a low-down on that?

Female: [02:09:58]

Okay, so this is a high-risk group. Basically, we want to be aware of the risk of ticks, exactly what we had over on the other side. Signs, parks, trails. Educate and train coaches. Everyone should be educated in tick removal, so that's very, very, very important; that, I mean, yes, we want doctors and stuff to be doing it, but if you're at a summer camp and you don't have immediate access to a hospital, it might be worthwhile to make sure there's tick kits in all of these camps and that they have the knowledge in order to do that.

Golf courses, campgrounds. Wrote down CanLyme kits, of course. Those are the ones that are $15. Summer camps. Ads in outdoor magazines, hunting, camping, RVing, and hiking magazines. Ads in Running Room stores. Parks and Rec books. Outdoor stores. Survey equipment stores, because surveyors, of course, that's what my dad was, and they're extremely high-risk.

And how will this look when it's successful? Basically, general awareness in that community because they're such a high-risk group. Educate an awareness of high-risk groups. And …

Female: Locations.

Female: Locations, right. So again, that comes back to I think media a little bit, where it's up to the media to make sure all that information is getting out to everyone.

Kathleen: Okay, so I am going to be allowing you guys to continue the conversation past 12:15 as long as you want, but I'm going to have to go if I'm going to prepare this and grab a quick bite to eat.

Female: [02:11:34]

I just think I know in British Columbia, WorkSafeBC, you know, they're responsible for the safety of people working in the outdoors, so if we could get them involved in that, too.

[Talking over each other]

Female: Good idea.

Female: What's the name again?

Female: WorkSafeBC. Yeah, I'm not sure if that's national or not.

Kathleen: Alright. Bon appétit, folks! We'll see you back there at one o'clock. Oh, I'm sorry. Folks, we just had one more. There was one more comment and I forgot. Go ahead.

Female: [02:11:57]

I just wanted to provide a counterpoint to the use of pyrethroids, these insecticides. I've done a lot of research on health effects of pesticides. They are neurodevelopmental toxicants, which means that if women are exposed to them during pregnancy, the children have learning problems. And they're also risky to young children. So, young children, pregnant women, I wouldn't recommend, and I would never use them inside my house.

Female: Oh, no, no.

Female: [02:12:26]

Hey, guys, as we're all leaving, there's a few of us that have talked to the facilitators. We're trying to get a group photo in the main room at the end of it all. And it's May, which means it's 'Take a Bite Out of Lyme,' so somebody's gone now to get limes, and we're going to use that as a big, huge 'Take a Bit Out of Lyme' photo op, okay? So make sure you're there.

[Talking over each other]

Female: When?

Female: At the end in the big room, the main room.

Female: And we end at three?

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