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APR 29, 2017 — Sue Faber and Jennifer Kravis are headed back to Ottawa to meet more MPs, Senators and Public Health May 2-5th. We also have wonderful news, Dr. Ralph Hawkins, MD, a Canadian physician who treats Chronic Lyme patients, is coming to Ottawa with us to speak as a subject matter expert.
Please see our video update on our second Ottawa trip, recent media profiling Lyme disease and what YOU can do to help! Thank you
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APR 19, 2017 — Last week, my friend Sue Faber and I (Jennifer Kravis) packed up our bags, and we took a trip to Ottawa, for the purpose of bringing the voices of 40,000 Canadians to our Government.
In January, Sue Faber started the Lyme Letters Campaign, calling on Canadians affected by Lyme disease to write a letter to federal Health Minister Jane Philpott, and send them to Sue, so she could collect them, and ensure they were brought to the attention of and delivered to, Minister Philpott. She has over 2,300 letters. We also have just under 40,000 signatures on this Petition, and over 10,000 comments. We have been so moved by the messages we have received, we felt we had to do everything in our power to ensure these voices are heard beyond the two of us. So - we booked a trip to Ottawa last week on short notice, with nothing planned, and no meetings booked. Our plan was to sit on Parliament Hill for 2 days and do everything in our power to ensure your voices were heard. It was a fantastic success – we were able to secure meetings with 13 different MPs and/or their assistants, from ALL parties – Green Party, NDP, Conservative and Liberal. All the MPs we met with are listed at the end of this note. If any are YOUR MP, I would recommend a follow up meeting or phone call with them, to reinforce the messages we relayed. In terms of the Framework on Lyme disease, it’s not clear that your MP will be able to do anything. But, this issue is only going to get more and more serious, so it is critical that representatives of ALL parties are aware of what is going on. Our message was that this is an urgent health crisis, and must rise above partisan politics so that all concerned MPs can work together on this issue and raise a united voice. This Petition is a very powerful tool. We were able to search the comments by city, and pull out a summary for every MP of just THEIR constituent voices. Calgary for example, has over 300 comments to date! We also gave them a copy of the full comments, which is several inches thick, double sided. I’m attaching our video summarizing our trip and what we learned. This will take you to the LymeHope facebook page and please click “Follow” to receive our continued updates. We are also attaching below the letter that MP Kevin Waugh, PC (Saskatoon) wrote to Minister Philpott on our behalf. We are so grateful, and plan to follow up and make a similar request to each MP we met. Unfortunately, despite numerous requests for a meeting, Minster Philpott has not yet responded to us. We did however, meet with her assistant, which was fantastic as I’m sure her assistant would have briefed her afterwards. Every MP and assistant we met, was visibly moved by what we had to say. Our biggest takeaway is that a face to face meeting with your MP is very valuable, we discovered that despite best efforts to keep up, they receive so many emails you cannot guarantee your email or letter has been read. Sue and I are considering a second trip to Ottawa to continue sharing these powerful voices. It’s clear that many MPs really have no idea how serious or widespread this disease is. We would like to send out a special thanks to Tamara House, Rose Lazzara, Carrie Weiss, Lesley Fleming, Kristy Giles, Suzanne Shillington, Tiffanie Gallant and her mom for coming out and standing in the cold with us, bringing lunch, visiting to say hi and helping this trip to be a success. Please continue sharing this Petition and urging others to sign and comment. Thank you for your continued support and interest. Sincerely, Jennifer Kravis & Sue Faber The Lyme Moms MPs we Met: MP Elizabeth May, Green Party, Saanich-Gulf Islands, BC MP Ed Fast, PC, Abbotsford, BC MP Neil Ellis, Lib, Bay of Quinte, ON MP Karina Gould, Lib, Burlington, ON MP John Brassard, PC, Barrie, ON MP Karen Ludwig, Lib, New Brunswick MP Don Davies, NDP (Health Critic), Vancouver, BC MP Len Webber, PC, Calgary, AB MP Raj Saini, Lib, Kitchener-Waterloo, ON MP Dan Ruimi, Lib, Pitt-Meadows-Maple Ridge, BC MP Kevin Waugh, PC, Saskatoon-Grasswood, SK Assistant to MP Mark Gerretson, Lib, Kingston and the Islands, ON Assistant to MP Colin Fraser, Lib, Nova Scotia Assistant to Health Minister Jane Philpott, Lib, Markham-Stouffville, ON APR 11, 2017 — This morning, CanLyme, in partnership with MP Elizabeth May, MP Tracey Ramsey, and Senator Kelvin Ogilvie hosted a non-partisan press conference, joined by Dr. Melanie Wills, Dr. Liz Zubek and Rossana Magnotta, to explain why the federal draft Lyme Disease Framework MUST be rewritten with input from ALL stakeholders including Canlyme experts.
Read a summary of the press conference here: https://canlyme.com/2017/04/11/canadian-scientists-physicians-and-advocates-unite-in-request-to-minister-philpott-to-insist-upon-an-ethical-process/ In addition, there is a link to watch the full press conference as well. This is a perfect introduction to our journey to Ottawa to bring the voices of 40,000 Canadians detailing the human suffering which is resulting from outdated and inadequate Lyme policy in Canada. We have had a tremendous response from MPs to our request, on short notice, for face to face meetings, and we are thrilled that we have 10 MP meetings booked in the next two days. This Petition has been so instrumental in raising awareness and helping our Government understand just how many Canadians are concerned about and affected by Lyme Disease. Please continue to encourage other Canadians to sign, comment and share this Petition: http://bit.ly/2lfBuNL APR 7, 2017 — At the federal Lyme conference in Ottawa last May, Dr. Gregory Taylor, then head of Public Health Agency of Canada, stood up and gave the following closing remarks (starts at 14:16 in the video link), clearly indicating how moved he was by the patient stories, and promised there would be transparency, progress on the issue of Lyme Disease, and partnership with Canlyme through the finalization of the Framework.
Shortly after the Conference, Dr. Taylor left his position to be replaced by Dr. Theresa Tam. When you read this, it becomes easier to understand why the Lyme community is so devastated over the Framework - after the Conference, there was real hope and trust that Public Health Agency would actually partner with us to help Canadians. Instead, we got more status quo, marginalization, and sweeping under the rug, shattering the community of sick people, fighting as hard as they can to prevent OTHER Canadians from going through the hell that is Lyme Disease in Canada. Dr. Gregory Taylor, Closing Remarks, starting at 14:16 Transcript here: "Thanks Jim. Can everyone hear me ok? Great. I too like Jim had a prepared speech – mine was done by a speechwriter and I have to apologize to Cory when I go back but I’m not going to use it. I wish I had some words of wisdom for you but I don’t; you’ve already said all the words of wisdom, and I thought that, rather than a prepared speech, as you’ve done, I need to speak from the heart. So I want to start by thanking everyone, thanking all of the participants, thanking my Tri-Chairs, thanking the planning committee. I think Dan and his team have done a spectacular job. Staff of the public health agency helped prepared this and have done a great job and I’ll be thanking them tomorrow. Thank you. If I was to describe my experience in the last few days - and I have been watching and listening, and the only thing that comes to mind is wow. That’s the only thing I can think of, it’s just been an incredible learning experience from the personal the last few days, and it has just been difficult to describe, and difficult to describe the pain that I saw in people and the anger that I saw in people - but as one of your facilitators said, the hope. And the hope that I have heard throughout, has just been incredible. People aren’t here to bitch and complain; people are here to make it better, and that’s great, and that’s where we are all on the same page. That hope and clearly that commitment and clearly the altruism because every comment I heard was about making it better for other people and making it better for other Canadians so we are on the same page for that one, because that’s our job too. I think I also wanted to thank you for a very vivid reminder with us where we work and I don’t get a chance to talk to real people most of the time in my job, I talk to representatives, and I talk to politicians. I don’t get a chance to talk to real people like I used to when I practiced medicine – clinical medicine, but the vivid reminder that if what we are doing at the public health agency, the federal government, is not making a difference to individual Canadians then we’re not doing our job. So… and I want to thank you for that. It’s very moving. It’s very moving and it’s part of why I do this job. People ask me why I left family practice, to go into public health, and in family practice as you know, you can make a big difference in the lives of 2 or 3,000 people, at public health you get an opportunity to make a difference in the lives of 37 million people, and we need to make that difference, clearly. So thank you for that reminder. The other reminder is we must engage Canadians better and more. We must engage patients, better and more. And you don’t need to hear that from me, our new Prime Minister has also said that on numerous occasions engaging Canadians. So very much in that spirit I think this event that we’ve had the last few days. I’m typically an optimistic kind of person, I like to focus on the good things. So what’s crystal clear and I think we’re lucky as Canadians, and in fact our colleagues in the States look at us in envy, believe it or not, from the CDC - Centres for Disease Control, we’re natural collaborators, and so I didn’t hear anybody today say they know exactly what to do so leave us alone so I can get it done - not one person. Everybody is saying “we need to work together”. So we’re natural at that and I think we need to be lucky, and proud of that. I like to focus on where we agree. Everyone has agreed we need better surveillance, both patients and ticks, no question. Everyone has agreed we need better education, better prevention. I said that at Power and Politics yesterday, people agreed, that I’m sure most Canadians would prefer not get sick at all than be treated well. If we can prevent Lyme disease then that’s the ultimate goal, that’s where the public health where I work is all about, it’s about preventing disease. Everyone agrees we need treatment guidance, improved treatment guidance – we need best practices, so we all agree upon that. It’s really interesting because this wasn’t intended to be a consensus Conference. This was intended to simply get input and listen to folks - but I hear a lot of consensus, I hear a lot of folks saying exactly the same thing, on both sides of the fence. Which I think is very positive for the way forward. Certainly, what next? As you know the Act stated that we would produce a federal Framework. I like to put in “for action” because where I come from, the bureaucrats, if it’s not in it for action again, it’s a nice document that’s not very useful. Back at the ranch, we have all kinds of documents that we’ve spent hours producing that go nowhere. This has got to be for action. So we’re supposed to gather the information and we will do that, guaranteed. All of the input from these last few days will be posted for everyone to see. It’s being recorded- that will be posted, everyone is going to try to capture as much as we possibly can. As we develop this Framework, I think we should do it very quickly. Remember, the Framework is a roadmap for action. The real work is going to happen after we get that out of the way and get at the real work that needs to be done. I don’t want us to waste a lot of time doing this Framework and getting the wording just right, let’s just get on with it. So, you will have an opportunity to put into the framework, I will, we will, share drafts of that, we will get input. In terms of engagement, our point of contact is Jim. It’s been that way for a long time. He’s our conduit into you. So we will be sharing and we will do our best to ensure that your voices are represented in this one. And I think that you have to remember, this is not the first, although this is one of the best - this is not the end – we do need to - and I do want to echo Jim’s words, we need to engage on an ongoing basis, partnerships, partnerships with patients, partnerships with Canadians – that’s where we need to go. And so, again, so I don’t have any brilliant ideas, you have the brilliant ideas, although I must say some of them were great – “un-suck at sharing information”. Now I got to tell you how true that rings. We do surveillance all the time across Canada with the Provinces and Territories and - man, that could apply to everything we do – sucking it out of the Provinces sometimes. I was particularly struck by the “citizen scientist”. I thought that was kind of cool. That was really cool. Building on expertise in places you don’t expect it to be. We put ourselves as “experts” but it doesn’t mean we know all the answers and I think both of my colleagues have said “the science is one thing, interpreting that science in terms of what does it mean and what do you do about it is a little bit different.” So I thought that was good. Transparency, that’s key - absolutely key, and we will certainly do the best that we can to ensure that as we go forward, we are as transparent as possible. Building the business case – that was pretty savvy. In the political environments that we live in, when politicians have multiple conflicting priorities, multiple groups looking for money, you got to build the solid business case for investment and I think there’s lots of information here that will be able to help us build that business case. And the last one, which I thought the drawing was great, was sex with the ticks. So I knew I was in the right room when we started talking sex with a tick – that was great. Anyway… Thanks again, it’s been a very moving experience for me personally and I do want to thank you all for sharing. There’s been some really amazing stories the last few days, and you all took a lot of risk. I got to say that. A lot of risk – revealed yourself personally because you believe that together, we can work and be more effective. I’m there with you. I look forward to working with you in the future. Thank you so much." APR 5, 2017 — We are 2 Canadians – Jennifer Kravis (lawyer) and Sue Faber (nurse) – Moms who have been diagnosed with Lyme disease, as well as our children, representing tens of thousands of Canadians Concerned about Lyme disease. We are the authors of this Petition.
We are travelling to Ottawa and will be on Parliament Hill on Wednesday April 12 and Thursday April 13, 2017 to ask the Health Minister Jane Philpott whether the Government is putting into action the outcry of YOUR voices - more than 38,000 Canadians who signed this Ticking Lyme Bomb petition - Link Here: http://bit.ly/2lfBuNL. We are also going to Ottawa to hand deliver to the Health Minister more than ten thousand petition comments and personal letters written by Canadian men, women and children literally pleading to be heard about their profound suffering and neglect as a result of the denial and lack of treatment for Lyme disease in Canada. Our federal government passed Bill 442 requiring that an Action Plan be created based on the best available information from medical and scientific experts and from patients themselves. The current draft Plan is a failure of that mandate. If the Final Framework for Lyme disease is not fixed, the Lyme bomb will keep ticking and more and more Canadians will be at risk. What can YOU do to support us? So glad you asked… here are some ideas… 1. We need MORE Petition signatures, please try to think of 5 new people you haven’t asked yet and send it to them asking them to sign and share, 2. If you are in the Ottawa area on Wed. April 12 or Thurs. April 13, stop by Parliament Hill and look for us (the Ticking Lyme Moms) with the lime green umbrellas, 3. Consider making a donation to our cause through our Go Fund Me Page here: https://www.gofundme.com/TickingLymeMoms We cannot issue tax receipts. To date, we have been funding all of our advocacy work out of our own pockets. Donations of any size would be much appreciated. 4. Follow the Ticking Lyme Moms on Twitter @tickinglyme, on the web at www.lymehope.ca and on Facebook at https://www.facebook.com/lymehopecanada/ #tickinglymebomb; #lymehope THANK YOU and wish us LUCK on the Hill. Jennifer Kravis & Sue Faber Ticking Lyme Moms MAR 26, 2017 — Canadian Public Health states in the draft Lyme Framework issued on February 7, 2017, that only the backlegged tick (in Central and Eastern Ontario) and the western blacklegged tick (in Western Canada) carry Lyme Disease.
However, in a brand new research paper studying ticks in the Kenora Ontario area, researcher John Scott found 8 different tick species carrying Lyme disease! Scott et al., J Bacteriol Parasitol 2017, 8:1 DOI: 10.4172/2155-9597.1000304. http://lymeontario.com/wp-content/uploads/2017/03/lyme-disease-bacterium-borrelia-burgdorferi-sensu-lato-detected-inmultiple-tick-species-at-kenora-ontario-canada-2155-9597-1000304.pdf The abstract is listed below. [1] A previous study published by Mr. Scott showed that ticks in the Lake of the Woods / Kenora area in Ontario had Canada's highest rate of infection with Lyme disease (71%). [2] John Scott was recently awarded a Sovereign’s Medal for Volunteers for his 27 years of research and advocacy in the field of Lyme Disease in Canada. [3] Clearly our Government has a lot of work to do to catch up on this serious threat! Please continue to share this Petition and ask other Canadians to sign and share. Thank you. [1] Abstract: We detected the Lyme disease bacterium, Borrelia burgdorferi sensu lato (s.l.), in 8 species of ixodid ticks (Acari: Ixodidae) collected from mammalian hosts, including humans, at Kenora, Ontario, Canada. These 8 tick species include Ixodes angustus, Ixodes banksi, Ixodes cookei (groundhog tick), Ixodes gregsoni, Ixodes muris (mouse tick), Ixodes scapularis (blacklegged tick), Haemaphysalis leporispalustris (rabbit tick), and Dermacentor albipictus (winter tick). Based on PCR amplification, 39 (41%) of 94 ticks tested were positive for B. burgdorferi s.l. DNA sequencing of the flagellin B (flaB) gene of B. burgdorferi s.l. complex revealed the presence of B. burgdorferi sensu stricto (s.s.), which is pathogenic to humans, and causes diverse neurological manifestations in patients. Notably, we provide the first record of B. burgdorferi s.l. in I. gregsoni, and reveal a new distribution record for this tick in eastern and central Canada by extending the known range westward by 200 km. Our findings indicate that there may be a wide-ranging enzootic transmission cycle of B. burgdorferi s.l. within the ecosystem throughout the Kenora area. The health-care profession must be fully cognisant that Lyme disease is present in the Kenora area, and is a public health risk. [2] http://www.cbc.ca/news/canada/thunder-bay/lyme-disease-corkscrew-island-1.3878034 [3] https://canlyme.com/2017/03/16/ontario-lyme-researcher-john-scott-receives-governor-general-award/ MAR 17, 2017 — On March 9th, CBC Ottawa Radio interviewed 2 Lyme disease advocates on why the proposed draft Canadian action plan (called the Framework) for Lyme is inadequate.
Listen here: http://www.cbc.ca/lis…/shows/ottawa-morning/segment/11938557 On March 10th, CBC Ottawa interviewed Dr. Caroline Quach, President of AMMI Canada (the Association of Medical Microbiology and Infectious Disease Canada) - who, for reasons unknown, fully supports the abysmal status quo - to ask her to respond to some of Canadian's concerns about Lyme. Listen here: http://www.cbc.ca/lis…/shows/ottawa-morning/segment/11949336 Also attached below is a post from the Canadian Lyme Science Alliance "fact checking" the statements made by Dr. Quach, which unfortunately reveal that 6 of the 8 scientific statements Dr. Quach made were inaccurate. This is highly disturbing, as both the possible explanations are equally deeply troubling. Either she is misinformed, or is misleading our doctors and the general public. https://www.facebook.com/notes/canadian-lyme-science-alliance/lyme-in-the-media-fact-checking-ammi-president-dr-caroline-quach/1502680299762884 Speaking of science, a 1988 Bulletin published by Canadian Diseases, almost 30 years old now, warning that “biting flies and mosquitos have been implicated in the transmission” of Lyme, and that “transplacental transmission of B. Burgdorferi [the bacteria causing Lyme] has been documented”. Indeed, if you go to the Centre for Disease Control Website found here: https://www.cdc.gov/lyme/transmission/ The CDC states quite plainly that "Lyme disease acquired during pregnancy may lead to infection of the placenta and possible stillbirth” and that "scientists have found that the Lyme disease bacteria can live in blood that is stored for donation. Individuals being treated for Lyme disease with an antibiotic should not donate blood.” It is extremely difficult to understand how our Public Health and AMMI can continue to insist these are not of concern, and that no further funds and research are warranted. MAR 15, 2017 — Thanks to all of YOU, this Petition was raised in the House of Commons by MP Don Davies (Vancouver Kingsway), the NDP Health Critic!
ALL the MPs across Canada were made aware of how many people are concerned and asking for change on Lyme disease policy in Canada. If you wish to thank MP Davies for raising this issue on behalf of all Canadians, his email is: [email protected]. This Petition continues to be a powerful tool, please, continue sharing and encouraging others to sign, comment & share! MAR 12, 2017 — Any pet owner has likely already experienced the strange reality that Veterinarians are very open about the fact that Ticks carry Lyme Disease AND other infections, and are widespread across Canada. The message to pet owners is that tick-borne infections are prevalent, extremely serious, need to be treated right away, and often require multiple courses of antibiotics to fully eradicate the disease.
Why is the message to humans the opposite? See this 30 second video https://www.youtube.com/watch?v=177IXkA7iEM, part of the “March is Tick Awareness Month” campaign for ANIMALS. This campaign is sponsored by the Canadian Veterinarian Medical Association and a “leading pharmaceutical manufacturer”. There is a vaccine available for sale for dogs. There is no current vaccine for humans; a previous human vaccine (Lymerix) was removed from market by its manufacturer after 3 years. There were many claims this vaccine caused similar symptoms to Lyme Disease. Maps showing dog cases of Lyme Disease, available here: http://www.petdiseasereport.com/content/prevmap.aspxdemonstrate the wide geographic range of ticks across Canada. Select “all years combined” and then zoom in on the map to confirmed dog cases of Lyme and other tick-borne diseases highlighted in your area. In 2015, a total of 2,320 cases of Lyme and Co-Infections were reported for dogs, and this number in 2016 increased to 2,491. Vets acknowledge the actual cases will be much higher than reported. Yet, humans are being told there are only a handful of tick “risk areas” in Canada and if you cannot prove you have been in one of these so-called “risk areas”, you will NOT be recorded as having Lyme Disease, even with a positive test. https://www.canada.ca/en/public-health/services/diseases/lyme-disease/surveillance-lyme-disease.html. The number of published human Lyme Disease cases in 2015 was 917, and in 2016, it was 841. So Public Health is telling us human cases of Lyme are going down! Are you concerned yet? You should be. Please continue to share this Petition and encourage others to sign and share as well. Thank you. MAR 9, 2017 — Thanks to all of YOU who have signed, commented and shared this petition, we have great news and several updates!
As a result of numerous advocacy efforts, supported by the thousands of compelling comments on this petition (more than 9,100!) and the hundreds of letters and emails from the public to their federal MPs, a meeting with MPs from all parties was held in Ottawa Monday evening on Lyme Disease and the draft Framework. We heard that MPs in attendance were very engaged on the issue and expressed concern. The bonus is that this MP meeting and the Ticking Lyme Bomb Petition were profiled on the CTV Ottawa evening news Monday night! Watch the clip here: http://ottawa.ctvnews.ca/stop-ticking-lyme-bomb-petition-urges-federal-government-1.3313231. We need to keep pushing! While Public Health has closed public comments on the draft Framework yesterday (March 8), the Petition goal remains: to demand Minister Philpott to reject this draft Framework and fix it. As well, this Petition asks supporters to write their MP. Since the MP round table has already occurred, the suggested request to MPs is to reinforce the message to Minister Philpott to reject this draft Framework. Your support means so much, please continue to share this Petition across Canada so that ALL Canadians’ have a chance to voice their concerns! Thank you. |
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