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.