 This Picture: Left to Right - Steven Sternthal (Director General for Zoonosis Division), Dr. Howard Njoo (Deputy Chief Public Health Officer), Tamara House (Vice-President of Families and Children, LymeHope), Kim Elmslie (Vice-President Infectious Diseases Prevention and Control), Dr. Siddika Mithani (President, Public Health Agency of Canada), Jennifer Kravis (Co-Founder, LymeHope), Dr. Nick Ogden (Senior Research Scientist, Zoonosis Division PHAC), Jane Bailey (Lyme Advocate), Dr. Robbin Lindsay (Research Scientist PHAC, National Microbiology Laboratory) and Sue Faber (RN, Co-Founder of LymeHope). We were also joined via teleconference with Dr. Charles Ray Jones, (Pediatric Lyme Specialist, New Haven Connecticut), Dr. Ralph Hawkins (Internal Medicine Physician), Dr. Lisa Waddell (Epidemiologist with the National Microbiology Laboratory, PHAC) and Dr. Matthew Gilmour (Scientific Director General of National Microbiology Laboratory, PHAC). Breaking News: Canada Acknowledges Maternal-Fetal Transmission of Lyme Disease!  “What is the value of one child’s life?”
As Canadians, we soon will be coming together to celebrate a cherished national holiday Thanksgiving. At LymeHope we are genuinely thankful for the incredible news which we will now share with you. This news pertains to all Canadians suffering from or concerned about Lyme disease, but specifically those who are concerned about the issue of maternal-fetal (in-utero) infection also described as transplacental transmission. Lyme disease is not only transmitted through a tick-bite, it can be passed from human-to-human, mother to child in pregnancy as reported in the scientific and medical literature. https://www.lymehope.ca/advocacy-updates/march-03rd-2018 This morning we met with senior scientists and executive officials at our Federal Public Health Agency of Canada as part of our ongoing discussions about transplacental transmission of Lyme disease. We had started these discussions over 18 months ago with the Agency anchored in a respectful, transparent and collaborative approach – doors opened, we walked through them. We were incredibly honoured to have U. S. Dr. Charles Ray Jones, MD, the world’s foremost expert in pediatric and adolescent tick-borne diseases join in this meeting. Dr. Jones shared his experience of treating over 30,000 children, from every continent in the world and every Province of Canada, over 60 years of practicing medicine and saving lives. He talked about the hundreds of congenitally infected children he has seen, and more importantly, how he has been able to cure them of their tick-borne diseases and allow them to live healthy lives. A short 1 minute video about Dr. Jones pioneering work here: https://www.youtube.com/watch?v=YsH5W3I0GM8 32 years ago, in 1988, our Public Health issued a bulletin stating that transplacental transmission of Lyme disease had been documented, and yet somehow, despite 30 years going by, the majority of Canadians and medical professionals remain unaware of this. Even worse, many experts have stated, to patients and publicly it “doesn't exist”. We have been determined to change this. https://www.lymehope.ca/advocacy-updates/health-and-welfare-canada-1988-report Today, our senior most officials at Public Health acknowledged that transplacental transmission of Lyme disease can occur, AND that they will be updating their website to reflect this. As mothers with suspected congenitally infected children, tears streamed down our face and hope rose in our hearts, that this truly is the beginning of a new era in Canada, a breath of fresh air. This means mothers who are told “maternal-child transmission of Lyme disease doesn't exist” can now update their medical teams of this acknowledgement by our very government, following on the heels of the recent acknowledgement of the World Health Organization. https://www.lymehope.ca/news-and-updates/world-health-organization-recognizes-congenital-lyme-borreliosis We must urgently come together to do our very best thinking – an all hands-on-deck approach to research this alternate mode of transmission and help children and families currently affected, many of whom reach out to us personally on a day-to-day basis. Each of you, through your signing and sharing this Petition, sharing your stories and comments, encouraging and touching our hearts, shares in this miraculous and well-deserved news. Thank you from the bottom of our hearts. LymeHope is already taking active steps to engage and assemble a multi-disciplinary working group of interested medical experts, scientists and meaningful patient representation. We must now come together to re-examine this critical issue and help implement the necessary steps to create a new reality in Canada, where pregnant women and their medical professionals are aware of the risks of transplacental transfer and are taking steps to ensure our future generations are protected from these devastating diseases. Dr. Jones today said he would be honoured to be a part of this initiative. We have promised our own precious children and indeed the children of Canada that we will not stop our work until the day when they all are able to walk into a doctor’s office and receive appropriate care and treatment. We are now a step closer to our dream becoming a reality. There is much work to be done; however, today we want to share this wonderful news with you. As we gather with our friends and family this weekend, we will be giving thanks for many things, including this first important step in changing the lives of Canadian mothers, babies and children. We wish you a wonderful Thanksgiving weekend, and, as always, thank you for your continued engagement and support as change happens. In closing, just as the two-hour meeting came to a close, Dr. Jones shared the last word. He asked, “what is the value of one child’s life?” Without hesitation he answered with these words. “It’s Priceless.” We all agreed and so, we step forward with renewed hope. Follow us on Twitter and Facebook @lymehopecanada If you haven’t already, please continue to sign, comment and share this petition. Warmly, Sue Faber Jennifer Kravis Tamara House (the “LymeMoms”) #LymeHope #Workingtogether #babiescanbebornwithLyme # Thankful
16 Comments
 Important! The World Health Organization has updated their ICD codes and interestingly enough..Congenital Lyme Borreliosis has been included! Congenital Lyme is an alternate mode of transmission of Lyme - from infected mother to her baby in-utero - thus the narrative changes from a purely zoonotic disease (from tick to human), to one that can be transferred human to human, mother to child. This is HUGE! Recognition of this REALITY that has been known about and documented for over 30 years..we will see what happens next and of course we will be sharing this exciting international recognition of Congenital Lyme Borreliosis with the Public Health Agency of Canada. What are ICD codes? 'The International Classification of Disease, Eleventh Revision (ICD-11) is a system of medical coding created by the World Health Organization (WHO) for documenting diagnoses, diseases, signs and symptoms and social circumstances.' Thanks to the tireless work of Jenna Luche-Thayer and the Ad Hoc Committee for Health Equity for their unrelenting pursuit of human rights and ensuring that Lyme disease gets the recognition, attention and funding it deserves and most importantly, that those who suffer get appropriate care, support and treatment, including babies and children infected from birth. A more detailed report about these updated WHO guidelines can be found here: https://www.linkedin.com/pulse/press-release-ground-breaking-recognition-lyme-11th-luche-thayer Check out the updated codes for yourself..on link below https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/756596252 Lyme and Pregnancy Resources: LymeHope Presentation on Maternal Child Transmission of Lyme Disease:
https://youtu.be/SLFRYVcGeR4 32 Years of documentation on transplacental (mother to child) transmission of Lyme disease/congenital Lyme/adverse outcomes: http://www.lymehope.ca/advocacy-updates/march-03rd-2018 LymeHope Updates on Lyme and Pregnancy/Congenital Lyme 1:)http://www.lymehope.ca/advocacy-updates/informative-case-study-on-congenital-transmission-of-lyme 2:)http://www.lymehope.ca/advocacy-updates/canadian-families-with-lyme-disease-concerns-of-maternalchild-transmission 3:)http://www.lymehope.ca/advocacy-updates/sharing-our-research-findings-on-lyme-and-pregnancycongenital-transmission-with-minister-of-health-and-public-health-agency-of-canada 4:) http://www.lymehope.ca/advocacy-updates/health-and-welfare-canada-1988-report  Community Info Session and Town-hall Meeting on Lyme and Tick-borne Diseases:
1: Dunnville Christian School Saturday July 7th, 2018 - 10:00am-11:30am. 2: Vittoria Old Town Hall Saturday July 7th, 2018 - 1:30-3:00pm. Hosted by MP Diane Finley. Special Guests include MPP Toby Barrett and Sue Faber and Jennifer Kravis - Co-Founders LymeHope, Haldimond-Norfolk Public Health Department. To Register at either event please visit:http://www.dianefinley.ca/lyme-disease-townhall/  'Transplacental transmission, adverse outcomes and reports of congenital infection of Borrelia Burgdorferi have been clearly documented over the last 33 years (1985 to 2018) by multiple international physicians, researchers, scientists and other experts. As entire families worldwide are affected by Lyme borreliosis resulting in serious debilitating illness and complex multi-systemic chronic infection, we must take this alternate mode of transmission - from mother to child in pregnancy, seriously. For Lyme disease to be passed from mother to child in pregnancy drastically changes the narrative, we know that, it opens up new issues and challenges – however, recognizing it for what it is, is the right thing to do. It means upheaval and reordering and re-prioritizing in what has been taught and rethinking many areas of concern which perhaps have been looked over – but we must remember – we have no choice but to act with the highest integrity and honesty. We have no option but to constructively engage, discuss and determine solutions and a clear path forward which will be a light for those who suffer, a beacon of Hope and healing. We need to prevent more miscarriages, stillbirths and babies from being born with Lyme and tick-borne illnesses – potentially leading to chronic pervasive, persistent and often disabling illness'. Sue Faber, RN. 
                         RNAO resolution and article 'Ticking Lyme Bomb' "Originally published in the May/June 2018 issue of Registered Nurse Journal, the official publication of the Registered Nurses' Association of Ontario (RNAO)."
 'In the spring of 2017, Faber and Kravis went back and forth to Ottawa three times with binders full of these personal stories. They shared them in meetings with MPs and were invited to speak as witnesses at the Parliamentary Standing Committee on Health. Around that time, Faber and Kinsella also met two RNAO colleagues who suggested the association could help get the message out: CEO Doris Grinspun and Halton chapter executive member Opal Robinson. Grinspun encouraged them to write a resolution about Lyme disease for the next annual general meeting (AGM) and Robinson invited Faber to share her story at the chapter’s November meeting. Nurses at that meeting were alarmed by the challenges Faber faced accessing health services for her family, and decided to take action. They voted to support a resolution on Lyme disease, seeking to raise awareness and amplify the voice of patients. “We wanted to bear witness to the suffering of these patients...and bring their story to the rest of RNAO,” says chapter president Louela Manankil-Rankin. In the weeks that followed, Faber, Kinsella and Manankil-Rankin co-authored a resolution that urges RNAO to “…advocate, at all levels of government, for Lyme disease prevention programs and the rights of all patients with symptoms consistent with Lyme and/or co-infections to receive evidence based, patient-centred care for both acute and multi-systemic chronic presentations of the disease in Canada; emphasizing health-care provider education that acknowledges alternate modes of transmission, persistence of infection, and integration of a collaborative clinical model inclusive of ILADS guidelines in the treatment of this illness.” The resolution was carried on April 20. “I’m so proud to be part of a profession that supported me and lifted me up,” Faber says, noting that several colleagues at the AGM approached her with hugs and thanks for bringing the resolution forward. Both Faber and Kinsella will continue to work on Lyme disease research. Faber also meets regularly with government and public health officials, and attended a roundtable discussion on Lyme disease with federal MPs in May. Both nurses say they are hopeful a shift in policy is on the horizon. If things are going to get better for Canadians with Lyme disease, Faber says nurses will be a critical part of the solution. “We listen to our patients, we advocate for our patients, and we care for our patients. I believe we, collectively, can be a beacon of hope for Lyme sufferers, and we can also be a voice for change.” RNAO Resolution:
Patient First Treatment for Ontarians with Lyme Disease
Submitted on behalf of Halton Chapter Author: Sue Faber and co-authors: Catherine Kinsella, and Louela Manankil-Rankin. Authors declare no conflict of interest. Resolution: WHEREAS people with Lyme disease and/or co-infections in Ontario are not consistently receiving appropriate diagnosis and treatment of these diseases due to inadequate testing protocols and a lack of up to date education of medical professionals on the clinical diagnosis of these diseases; WHEREAS there is a lack of education and awareness regarding persistence of infection, transplacental transmission, co-infections, other possible modes of transmission (sexual, blood supply, needle sticks, organ donation and other insect vectors), symptoms (acute vs. chronic), surveillance of chronic cases, modes of testing, treatment, and the existence of up to date, evidence-based guidelines published by ILADS; WHEREAS these challenges along with the politicization of this disease has created fear and uncertainty amongst healthcare professionals thereby forcing patients with Lyme disease and/or co-infections to pay for out of Country testing and seek health care outside of Canada at their own expense; THEREFORE be it resolved that the Registered Nurses’ Association of Ontario (RNAO) advocate, at all levels of government, for Lyme disease prevention programs and the rights of all patients with symptoms consistent with Lyme and/or co-Infections to receive evidence-based, patient-centred care for both acute and multi-systemic chronic presentations of the disease in Canada; emphasizing healthcare provider education that acknowledges alternate modes of transmission, persistence of infection, and integration of a collaborative clinical model inclusive of ILADS guidelines in the treatment of this illness. Background: Lyme Disease is a serious and rapidly growing public health crisis in North America, caused by the bacterium Borrelia burgdorferi. It is spread by ticks that are carried by migratory birds and animals such as deer and mice. In 2016, there were an estimated 178,000 cases in US States bordering Ontario (Centers for Disease Control and Prevention, 2017). Canadian scientists predict that by the year 2020, 80% of the population of Eastern Canada will be living in a tick-populated area (Leighton, 2012). Limitations of current testing (Health Canada, 2012) and treatment protocols have left thousands of Canadians improperly diagnosed and inadequately treated for the disease. Many have been forced to seek treatment outside of Canada at their own expense resulting in financial hardship, significant stress and strain on families (Boudreau, Lloyd, Gould, 2017). Bill C442 was passed in 2014 with a mandate of creating a national strategy for Lyme Disease, embracing a collaborative process of all stakeholders including patients (Bill C442, 2014). In May 2017, the Federal Framework for Lyme Disease was released (Public Health Agency of Canada, 2017). In June 2017, the House of Commons Standing Committee on Health called for a study of the Federal Lyme Framework (HESA, 2017). Canadian patients, advocates, nurses, treating physicians, scientists, and researchers agree that the Lyme Framework failed its mandate and is insufficient to drive meaningful patient-centered change in Canada (HESA, 2017). It neglects to acknowledge the vast body of peer reviewed literature which documents persistence of infection resulting in chronic Lyme disease (International Lyme and Associated Diseases Society [ILADS], 2015) as well as clear evidence of vertical transmission from mother to child in utero (LymeHope, 2017). It is silent to voiced concerns over other possible modes of transmission (sexual, blood supply, needle sticks, organ donation and other insect vectors). Alternate testing options are not addressed, it does not adequately address co-infections that may accompany Lyme disease and does not address treatment guidelines for chronic Lyme disease. In a collective response to the failed framework, in August 2017, a petition with over 52000 names (Canadians Concerned About Lyme Disease, 2017), 14000 comments and 2700 personal letters from Lyme patients (Lyme Letters Canada, 2017) and their families were handed to the Federal Minister of Health and Chief Public Health Officer of Canada (Kingston, 2017). Patients have an important role to play through personal and public advocacy by presenting their lived experience to health professionals and decision makers including politicians at all levels of government (Federal Lyme Conference Patient Testimonies, 2017). Patients have the right to timely and appropriate clinical diagnosis and treatment of Lyme disease and all co-infections utilizing evidence-based and up to date guidelines developed by specialist bodies that include ILADS. The ILADS guidelines are currently the only guidelines endorsed and listed on the National Guidelines Clearinghouse that must meet the U.S. Institute of Medicine (IOM) standard for the development of clinical practice guidelines (NGC, 2014). Evidence based practice obliges practitioners to respect patients’ values and preferences alongside clinical judgment and relevant scientific evidence (DiCenso, Gordon, Ciliska, 2005). Nurses have a critical role to play in education, facilitating awareness, early detection and patient advocacy in areas such as Public Health, Emergency Rooms, Physician and Nurse Practitioner offices, summer camps and through policy change. Education has the ability to lift the veil of uncertainty surrounding Lyme disease for both patients and healthcare professionals and to bridge the gaps that currently exist, enabling early diagnosis and appropriate patient-centered treatment. References
 Groundbreaking news! ILADS Guidelines listed on Public Health Agency of Canada website! Canada is a world leader!
The Public Health Agency of Canada has now listed the International Lyme and Associated Diseases Society (ILADS) treatment guidelines - on their website - as one set of evidence-based treatment guidelines for Lyme disease. More to come, but we wanted to get the news out! To see for yourself: Scroll to the bottom of the page (link) below - under More Information and International Treatment Guidelines https://www.canada.ca/en/public-health/services/diseases/lyme-disease/health-professionals-lyme-disease.html#a3 Thank-you to all the tireless Lyme advocates from across Canada who have been pushing for this important recognition. Let's help more Canadians! Please sign, comment and share our Canadian Lyme Petition! https://www.change.org/p/minister-petitpas-taylor-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now #canlyme #lymehope #lymeadvocatesworkingtogether Lyme Carditis - CTV National News Fantastic news coverage and story on Lyme Carditis by Health Reporter Avis Favaro from CTV National News broadcasted Wednesday May 30, 2018. https://www.ctvnews.ca/video?clipId=1406543 Print Article (copied below): https://www.ctvnews.ca/health/rare-but-serious-complication-of-lyme-disease-can-attack-the-heart-doctor-1.3952476 'A heart specialist in Kingston, Ont. is warning health care professionals across the country to be on the lookout for a rare but serious complication of Lyme disease in which the disease bacteria begin to attack the heart. The condition is called Lyme carditis and it can do serious damage by disturbing the heart’s electrical system andrate. Cardiologist Dr. Adrian Baranchuk, from the Kingston General Hospital Research Institute, says that’s why it’s so important for Canadian doctors to recognize the symptoms early and begin treatment – even before they have a definite diagnosis. Most Canadians know Lyme disease is spread by ticks carrying the bacteria. The illness those bacteria cause is marked by fever, fatigue, and joint pain as well as other symptoms. But when Lyme bacteria travel through the blood to the heart, they can also cause inflammation that disrupts the organ’s electrical system. The result is a condition called “heart block” in which the heartbeat becomes too slow. The most common symptoms are sudden dizziness, shortness of breath, and chest pain. Left untreated, the condition can rapidly progress to complete heart shutdown. Adam Flisikowski was diagnosed with Lyme carditis last summer after the previously healthy teen ended up in hospital with an erratic and dangerously slow heartbeat that dropped to 30-40 beats per minute. The 19-year-old had just returned from a camping and fishing trip near Kingston and though he had taken precautions against bug and tick bites, when he got home, he found a small tick on his heel. He removed it, but six weeks later, he began having heart symptoms. “I woke up and I could feel that something was wrong in my chest,” he told CTV News. “I felt like I was running but I was sitting down.” Doctors told the teenager he might need to be fitted with a pacemaker to normalize his heartbeat. After several tests, doctors finally diagnosed him with Lyme carditis. Dr. Baranchuk says Flisikowskiwas just one of several patients who were admitted to the Kingston Health Sciences Centre’s cardiac unit over 18 months with heart block symptoms. All were males under the age of 50 – one was just 14 – and all had recently taken part in outdoor activities. “One of the things we noticed was each one of them had attended a different ER two to three times before anyone thought about this condition,” says Dr. Baranchuk. Diagnosing Lyme carditis is often difficult because not only is the condition rare, many patients don’t get the bullseye rash caused by the bite of a Lyme-infected tick. Many also don’t notice the other, vague symptoms of Lyme disease, such as fever and muscle aches, which are often mistaken for the flu. With Lyme diagnoses on the rise and the deer ticks that spread Lyme being found in parts of the country, Dr. Baranchuck worries Lyme carditis cases are going to increase but get missed. “We have the suspicion that there are way more cases than are reported, because doctors are failing to report it,” he said. That’s why Dr. Baranchuk has just published a paper advising Canadian health care workers to treat young patients with unusual heart problems with antibiotics to kill off any Lyme bacteria that might be present, while they wait for blood tests to confirm Lyme infection. “These patients may not require pacemakers to be implanted. They can be treated with IV antibiotics for 10 to 12 days and the electricity of the heart will recover completely forever,” he said. As for Flisikowski, because Dr. Baranchuk was able to offer him a quick diagnosis, he received antibiotics in time and his heart has now recovered. “I am doing pretty good now. I am back to normal, I can do normal activities,” he said, fully aware his story is now a cautionary tale. Sue Faber, a former ER nurse who had Lyme disease and now works with Lyme Hope, said that when patients present with symptoms such as fever, fatigue and joint pain, Lyme disease should be on top of mind among possible diagnoses, even when there is no rash present. “We can treat them with antibiotics and they can go on with their lives,” she said. The Ontario government says the best way to prevent Lyme disease is to prevent tick bites by: covering up
Dr Adrian Baranchuk: Cardiologist Meet Dr Adrian Baranchuk, Cardiologist extraordinaire from Queens University. I've had several opportunities to talk with Dr Baranchuk and appreciate his dedication to his profession and sharing his expertise in a way which will undoubtedly help Canadians! 'One of the things we noticed was each one of them had attended a different ER two to three times before anyone thought about this condition,” says Dr. Baranchuk. Diagnosing Lyme carditis is often difficult because not only is the condition rare, many patients don’t get the bullseye rash caused by the bite of a Lyme-infected tick. Many also don’t notice the other, vague symptoms of Lyme disease, such as fever and muscle aches, which are often mistaken for the flu.' We also appreciate that Dr Baranchuk took the time to share his research at the recent MP round table in Ottawa on Lyme disease! Fantastic collaboration! Dr Baranchuk's full CTV interview here: https://www.ctvnews.ca/video?clipId=1406334 His publication in the CMAJ on Lyme Carditis: http://www.cmaj.ca/content/190/20/E622 Recent article on Dr Baranchuk's work at Queens: https://www.queensu.ca/gazette/stories/new-hope-lyme-disease-battle Adam Flisikowski - Diagnosed with Lyme Carditis Meet Adam Flisikowski - 19-year old shares his experiences with Lyme Carditis. He discusses taking preventative measures before he went on a camping and fishing trip - he was wearing long sleeves and socks over his pants. At first he thought it was soil, a speck on his foot - but it was stuck on, very small. It was a small tick. 6 weeks after the bite, his heart started racing, felt that something was wrong in his chest.. 'The 19-year-old had just returned from a camping and fishing trip near Kingston and though he had taken precautions against bug and tick bites, when he got home, he found a small tick on his heel. He removed it, but six weeks later, he began having heart symptoms. “I woke up and I could feel that something was wrong in my chest,” he told CTV News. “I felt like I was running but I was sitting down." Doctors told the teenager he might need to be fitted with a pacemaker to normalize his heartbeat. After several tests, doctors finally diagnosed him with Lyme carditis.' He hopes his story can highlight the Importance of everyone being aware of this serious issue. No one knew right away that it was Lyme disease, Lyme carditis... Adam's interview here: https://www.ctvnews.ca/video?clipId=1406436 Sue Faber: Registered Nurse Meet Sue Faber, Registered Nurse, co-founder of LymeHope and discussing the importance for frontline healthcare professionals to be aware of Lyme disease as a differential diagnosis - not all patients have a rash, not all patients remember a tick bite! We need to educate on the diversity of acute and chronic lyme disease presentations and continue working in collaboration to spread the word and help more Canadians! Education on Lyme carditis must be a collaborative, multi-disciplinary approach which engages medical and scientific experts along with patients - who know first hand the disease they suffer with. Evidence-based medicine is anchored in this approach and we will continue to make strides forward as we work together to educate and engage with frontline healthcare professionals - with the patient experience and narrative as an important focus.
Thankful for Dr Adrian Baranchuk from Queens University pioneering this important work - for his dedication and research on Lyme Carditis - spreading the word and educating other healthcare professionals! Sue's CTV interview here:https://www.ctvnews.ca/video?clipId=1406270 Recent Registered Nurses Association of Ontario resolution on Lyme disease: co-authored by Sue - speaking to the importance of Patient First Treatment of Canadians with Lyme disease: http://www.lymehope.ca/news-and-updates/registered-nurses-association-of-ontario-resolution-on-lyme-disease Of 400 ticks collected, 98% were black legged ticks which can transmit Lyme disease Photo of Dr Vett Lloyd and colleagues Courtesy of CBC Excellent article by CBC about Lyme disease carrying ticks on PEI and the research of Dr Vett Lloyd from Mt Alison University.
Dr Lloyd is a Lead Researcher of the Canadian Lyme Consortium (CLC) - a Canadian research network focused on Lyme disease with a model of patient-research-clinician engagement at all levels for all projects by conducting meaningful science and investigating questions that matter to patients and matter to the healthcare professionals who treat patients - see more info on the Canadian Lyme Consortium (CLC) in link below. Many Canadians chose PEI as their summer destination of choice and so this information is vitally important to be aware. 'Lloyd says more than 80 per cent had been picked up on Prince Edward Island, from people who hadn't travelled off the Island. The vast majority, she said, were the black legged ticks, formerly known as deer ticks, which can transmit Lyme disease.' 'The lab also tested blood samples from dogs across the Island. Lloyd said seven were infected with the Lyme disease bacteria and six of those had never left the Island.' Please also join almost 62000 Canadians in signing, commenting and sharing our Canadian Lyme Petition and issues around Lyme disease and the obstacles and road-blocks faced by Canadian sufferers need to be dismantled. Canadians who are currently sick with Lyme disease need recognition, treatment and support. Canadians who are concerned about Lyme disease need the appropriate tools, up-to-date treatment guidelines and resources to best deal with when they encounter a tick - whether it be the school-yard, golf course or back-yard. https://www.change.org/p/minister-petitpas-taylor-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now More information on the Canadian Lyme Consortium (CLC) here: http://www.lymehope.ca/advocacy-updates/patient-first-research-patient-first-engagement-patient-first-values-and-preferences-patient-questions-making-an-informed-choice Patient First Treatment for Ontarians with Lyme Disease - RNAO Resolution The Registered Nurses Association of Ontario (RNAO) voted through a resolution on Lyme disease 'Patient First Treatment for Ontarians with Lyme Disease' at their annual AGM conference in Toronto on Friday April 20th, 2018.
A live recording of the resolution process and vote below. Please note, the Lyme resolution is the very first one addressed. https://www.facebook.com/RNAOHomeOffice/videos/10151012128169944/ **please note, 2 minor amendments were made to the below resolution adding in prevention programs for Lyme disease and strengthening some of the language used. We will update the resolution to reflect the changes with these amendments as soon as possible. Patient First Treatment for Ontarians with Lyme Disease Submitted on behalf of Halton Chapter Author: Sue Faber and co-authors: Catherine Kinsella, and Louela Manankil-Rankin. Authors declare no conflict of interest. Resolution: WHEREAS people with Lyme disease and/or co-infections in Ontario are not consistently receiving appropriate diagnosis and treatment of these diseases due to inadequate testing protocols and a lack of up to date education of medical professionals on the clinical diagnosis of these diseases; WHEREAS there is a lack of education and awareness regarding persistence of infection, transplacental transmission, co-infections, other possible modes of transmission (sexual, blood supply, needle sticks, organ donation and other insect vectors), symptoms (acute vs. chronic), surveillance of chronic cases, modes of testing, treatment, and the existence of up to date, evidence-based guidelines published by ILADS; WHEREAS these challenges along with the politicization of this disease has created fear and uncertainty amongst healthcare professionals thereby forcing patients with Lyme disease and/or co-infections to pay for out of Country testing and seek health care outside of Canada at their own expense; THEREFORE be it resolved that the Registered Nurses’ Association of Ontario (RNAO) advocate, at all levels of government, for the rights of all patients with symptoms consistent with Lyme and/or co-Infections to receive fair and proper treatment for both acute and multi-systemic chronic presentations of the disease in Canada; emphasizing healthcare provider education that acknowledges alternate modes of transmission, persistence of infection, and integration of a collaborative clinical model inclusive of ILADS guidelines in the treatment of this illness. Background: Lyme Disease is a serious and rapidly growing public health crisis in North America, caused by the bacterium Borrelia burgdorferi. It is spread by ticks that are carried by migratory birds and animals such as deer and mice. In 2016, there were an estimated 178,000 cases in US States bordering Ontario (Centers for Disease Control and Prevention, 2017). Canadian scientists predict that by the year 2020, 80% of the population of Eastern Canada will be living in a tick-populated area (Leighton, 2012). Limitations of current testing (Health Canada, 2012) and treatment protocols have left thousands of Canadians improperly diagnosed and inadequately treated for the disease. Many have been forced to seek treatment outside of Canada at their own expense resulting in financial hardship, significant stress and strain on families (Boudreau, Lloyd, Gould, 2017). Bill C442 was passed in 2014 with a mandate of creating a national strategy for Lyme Disease, embracing a collaborative process of all stakeholders including patients (Bill C442, 2014). In May 2017, the Federal Framework for Lyme Disease was released (Public Health Agency of Canada, 2017). In June 2017, the House of Commons Standing Committee on Health called for a study of the Federal Lyme Framework (HESA, 2017). Canadian patients, advocates, nurses, treating physicians, scientists, and researchers agree that the Lyme Framework failed its mandate and is insufficient to drive meaningful patient-centered change in Canada (HESA, 2017). It neglects to acknowledge the vast body of peer reviewed literature which documents persistence of infection resulting in chronic Lyme disease (International Lyme and Associated Diseases Society [ILADS], 2015) as well as clear evidence of vertical transmission from mother to child in utero (LymeHope, 2017). It is silent to voiced concerns over other possible modes of transmission (sexual, blood supply, needle sticks, organ donation and other insect vectors). Alternate testing options are not addressed, it does not adequately address co-infections that may accompany Lyme disease and does not address treatment guidelines for chronic Lyme disease. In a collective response to the failed framework, in August 2017, a petition with over 52000 names (Canadians Concerned About Lyme Disease, 2017), 14000 comments and 2700 personal letters from Lyme patients (Lyme Letters Canada, 2017) and their families were handed to the Federal Minister of Health and Chief Public Health Officer of Canada (Kingston, 2017). Patients have an important role to play through personal and public advocacy by presenting their lived experience to health professionals and decision makers including politicians at all levels of government (Federal Lyme Conference Patient Testimonies, 2017). Patients have the right to timely and appropriate clinical diagnosis and treatment of Lyme disease and all co-infections utilizing evidence-based and up to date guidelines developed by specialist bodies that include ILADS. The ILADS guidelines are currently the only guidelines endorsed and listed on the National Guidelines Clearinghouse that must meet the U.S. Institute of Medicine (IOM) standard for the development of clinical practice guidelines (NGC, 2014). Evidence based practice obliges practitioners to respect patients’ values and preferences alongside clinical judgment and relevant scientific evidence (DiCenso, Gordon, Ciliska, 2005). Nurses have a critical role to play in education, facilitating awareness, early detection and patient advocacy in areas such as Public Health, Emergency Rooms, Physician and Nurse Practitioner offices, summer camps and through policy change. Education has the ability to lift the veil of uncertainty surrounding Lyme disease for both patients and healthcare professionals and to bridge the gaps that currently exist, enabling early diagnosis and appropriate patient-centered treatment. References
**Please note, 2 minor amendments were made but have not yet been updated to this resolution adding in education/prevention programs for Lyme disease and strengthening some of the language used. |
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