Recent interview with Cindy Kennedy for her podcast 'Living with Lyme'. I share my personal journey as a registered nurse, Lyme patient and advocate and an overview of how LymeHope started - as the result of reaching out and engaging with Lyme patients from across Canada - so that their voice would be heard and amplified.
- Sue Faber (Co-Founder LymeHope)
Very serious allegations have been made that Public Health Agency of Canada is interfering with the World Health Organization (WHO)’s process for the new ICD Codes by requesting the WHO delete the code for Congenital Lyme Borreliosis.
Regardless of whether these allegations are true, the code for Congenital Lyme Borreliosis appears to have been inappropriately removed from the WHO ICD-11 platform despite being declared stable as of June 2018.
Attached FYI is a pdf of our letter this morning to our Prime Minister, Health and Justice Ministers and Public Health Agency of Canada and opposition leaders. We are calling on Canada, as a United Nations member state, to protect the integrity of the WHO process and insist that the WHO immediately reinstate the ICD Code for Congenital Lyme Borreliosis and allow the WHO process to proceed uninterrupted and without interference.
Update: On December 21st and 22nd, 2018, Ms Kimberlie Elmslie, Vice-President, Infectious Disease Prevention and Control Branch of the Public Health Agency of Canada wrote in an email response to LymeHope and others:
“I am writing to indicate that the Public Health Agency of Canada did not request that the WHO remove congenital Lyme disease from ICD-11. The WHO has a well-established process of scientific evaluation used to update and revise the International Classification of Diseases. You may wish to seek information from the WHO on this process.”
“I can confirm that PHAC did not make representations to WHO MSAC at their September 6th or October 25th meetings. PHAC did not have advance knowledge of the outcomes of these discussions and only became aware through the postings on the ICD portal. The fact that we have never contacted WHO on congenital Lyme disease has also been confirmed directly to us by WHO officials.”
The purpose of this update is to share with you our most recent letter to Public Health Agency of Canada executives and Minister of Health Ginette Petitpas-Taylor. Our December 3, 2018 'Open Letter' outlines our requests for PHAC and Ministry of Health to take urgent action regarding in-utero transmission of Lyme disease. Letter below.
We are also sharing this link and letter to every single MP and Senator we have met in the last 18 months (from all parties) - all 63 of them as this issue is of great concern.
Please consider sending this link and letter to your MP with a short personalized cover note indicating you are concerned and ask him / her to raise this in Parliament.
You may look up your federal MP here (plug in your postal code in the search bar on right): http://www.ourcommons.ca/Parliamentarians/en/constituencies/FindMP
As always, thank you for your continued engagement and support. Should you feel our work is valuable, we would gratefully accept donations of any size to assist us in continuing to raise the voices and concerns of Canadians and to effect change in Canada and around the world. We cannot offer tax receipts at this time.
With Thankfulness and Hope,
Sue Faber RN BSc(N)
Jennifer Kravis BA, LL. B
In June 2018, PHAC hosted an in-person Multidisciplinary Round table Discussion on Lyme Disease. This was attended by diverse representation of provincial Public Health representatives, healthcare professionals, allied healthcare/veterinary, medical/nursing societies and associations and Canada-wide representation from patient advocacy groups and organizations.
Session Report June 2018
Webex Report October 2018
On October 24, 2018, PHAC hosted a web-ex Multidisciplinary Round table discussion on Lyme disease.
30 years after transplacental transmission of Lyme disease (Borrelia burgdorferi) was first documented and acknowledged by Federal Public Health officials in their 1988 Health and Welfare Canada Report, the Public Health Agency of Canada has just published a Systematic Review which confirms risk of in-utero transmission as well as risk of adverse pregnancy outcomes associated with gestational Lyme disease (Lyme disease in pregnancy). https://www.lymehope.ca/advocacy-updates/health-and-welfare-canada-1988-report
Scientists from Public Health Agency of Canada (PHAC), assisted by a co-author from the U.S. Centers for Disease Control & Prevention (CDC), recently reviewed the global scientific literature on the impact of Lyme disease during pregnancy and the effect on the fetus and newborn. Their findings were published on Nov 12, 2018 in PLoS ONE, a scientific journal.
LymeHope was honored to be invited by PHAC, as valued stakeholders, to share our expertise and feedback as reviewers of this important paper prior to publication. PHAC shared a draft copy of this review in February 2018 and we have been in close communication with review authors and senior Public Health officials as a result. We initially provided PHAC authors with over 50 pages of comments, questions and recommendations – all linked back to the peer reviewed literature. We were also thankful for the opportunity to engage in-person with the review authors and PHAC executives at our Oct 5, 2018 meeting in Ottawa. https://www.lymehope.ca/news-and-updates/breaking-news-canada-acknowledges-maternal-fetal-transmission-of-lyme-disease
We are delighted that much of our feedback was incorporated into the final review and we believe this will open more doors for this alternate mode of transmission to be acknowledged and researched in a meaningful, transparent way – for the sake of all children who suffer as a result of Congenital Lyme Borreliosis – in Canada and indeed around the world.
Some of the key findings in the review include:
This of course raises questions and concerns for those mothers who do not know they have Lyme disease (asymptomatic, misdiagnosed, undiagnosed) or those who know they have previously been infected, but may have been under-treated. Just last month, a new Canadian study authored by Dr. Ralph Hawkins and Dr. Vett Lloyd states that only 3-4% of Lyme cases are officially diagnosed – the current testing approach is failing ALL Canadians (not just our babies). This further highlights the magnitude of the problem in Canada affecting men, women, children and newborns alike. https://www.lymehope.ca/news-and-updates/published-research-suggests-only-3-4-of-lyme-cases-are-officially-diagnosed
We are pleased that Canada is positioning themselves as a global leader and agent for change when it comes to recognition and acknowledgement of this alternate mode of transmission (mother to child in utero) and we are thankful and honored to be a part of this historical process. The review is consistent with the World Health Organization’s recent recognition of Congenital Lyme Borreliosis in their updated ICD-11 codes: https://www.lymehope.ca/news-and-updates/world-health-organization-recognizes-congenital-lyme-borreliosis
Literature cited in the review reference list also identifies several critical issues which were not in the scope of this review, but need to be highlighted. For a more detailed review of the evidence of in-utero transmission and adverse outcomes of Borrelia burgdorferi please visit: https://www.lymehope.ca/advocacy-updates/march-03rd-2018
Where Do We Go from Here?
Your stories, letters, emails and signatures on the Canadian Lyme petition highlighting the reality of the suffering of Canadians of all ages, especially families where all all their children sick with Lyme disease, have been instrumental in guiding this process. Thank you. https://www.change.org/p/minister-petitpas-taylor-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now
We trust that this Systematic review will serve as a critical launching point for renewed scientific rigor and medical interest in this alternate mode of transmission. At LymeHope, we look forward to continued collaboration with multiple stakeholders, education of frontline medical professionals on these important issues. We will continue to prioritize meaningful patient engagement to press forward.
With Hope, All things are Possible,
Sue Faber, Jennifer Kravis and Tamara House
LymeHope had a fantastic 45min meeting on Nov 2, 2018, with Ontario Minister of Health Honourable Christine Elliot.
We gave her a copy of the Ticking Lyme Petition comments - with over 81,000 Canadian signatures and 14,000 personal comments from every province across Canada, if you haven't yet signed the petition please do - the link here: https://www.change.org/p/minister-petitpas-taylor-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now
We shared the historical in-depth literature which clearly documents in-utero transmission of Lyme Disease. https://www.lymehope.ca/advocacy-updates/march-03rd-2018
We also shared about the World Health Organization (WHO) recognition of congenital Lyme borreliosis in ICD-11 codes. https://www.lymehope.ca/news-and-updates/world-health-organization-recognizes-congenital-lyme-borreliosis
The 14,000 comments and common themes and concerns from over 2700 'Lyme-letters' written by affected Canadians (men, women and children) formed the basis of the Registered Nurses Association of Ontario (RNAO) resolution on Lyme disease which I co-authored earlier this year - clearly highlighting and acknowledging the diverse and serious concerns of Canadians affected. https://www.lymehope.ca/news-and-updates/registered-nurses-association-of-ontario-rnao-focuses-on-lyme-disease
We very much appreciated her time, listening and concern.
Joint press release:
“Lyme patient groups from across Canada are unified in their concern over the federal Minister of Health’s awarding of $4 million of Canadian taxpayer monies for Lyme disease research to a research group that has not included the patient voice in a meaningful and inclusive way from its initial conception and on up through all stages of research development.
We strongly agree with the CMAJ’s deputy editor, Kirsten Patrick, who wrote in the October 16, 2016 issue of the CMAJ:
‘For each step in the research process, investigators need to consider how best to involve patients in planning and decisions. For patient-relevant research to be meaningful, patient and public engagement in research cannot comprise a token lay person on a research ethics review board. Patients and their caregivers must be involved in decision-making at all steps in the research process, from design to choice of primary and secondary outcomes, through dissemination and implementation.’1
A robust and fully inclusive patient voice is of utmost importance in Lyme disease research for true advances in testing, diagnosis and treatment to come about.
Patient groups feel that at least two Lyme disease research networks are necessary in Canada to ensure differing viewpoints are heard.
The status quo has not served Canadians well up-to-this-point. Differing opinions need to be heard, understood and embraced before we can effectively move this issue forward. Independent researchers can also make an impact and we need to ensure that they are also heard.
While Lyme patient groups support thousands of Canadians who are now living with tick-borne illnesses, we also work hard to prevent even more Canadians from experiencing tick-borne illnesses down-the-road. It’s time for real change and that can only come about with meaningful patient engagement!”
Canadian Lyme Disease Foundation
L’Association québécoise de la maladie de Lyme
Lyme Disease Association of Alberta
Lyme Disease Association of B.C.
Manitoba Lyme and Tick-borne Diseases
New Brunswick Lyme Disease Association Inc. – LymeNB
Nova Scotia Lyme Disease Support Group
Ontario Lyme Alliance
Saskatchewan Lyme Disease Association
Under-Detection of Lyme Disease in Canada: Published in peer-reviewed journal HealthCare
co-authored by Dr. Vett Lloyd and Dr. Ralph Hawkins
Interview with Dr. Ralph Hawkins on CBC Radio: https://www.cbc.ca/listen/shows/calgary-eyeopener/segment/15618889 (interview starts at 14:14)
Interview with Dr Vett Lloyd on CBC Radio: https://www.cbc.ca/player/play/1348167747992
Interview with Dr Vett Lloyd on CBC Radio -Information Morning - Fredericton Oct 19, 2018
Radio Canada International - http://www.rcinet.ca/en/2018/10/19/lyme-disease-may-be-vastly-under-detected-in-canada/
CBC News Article -Lyme disease vastly under-detected in Canada, according to new study
Calgary Star Article (Oct 22, 2018): Research shows Lyme Disease vastly under-detected in Canada
The Chronicle Herald: https://www.thechronicleherald.ca/news/thousands-more-people-suffer-from-lyme-disease-than-reported-study-251500/
Canadian Lyme Consortium Statement: http://www.clymec.ca/news.html
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.
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