Cdn Gov't Published Lyme in Pregnancy Paper Confirms Risk to Babies.

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
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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. 
 https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0207067

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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:

• evidence for transplacental (mother to fetus) (vertical) transmission of Borrelia burgdorferi (Lyme disease) with negative outcomes for the fetus/baby
• evidence that gestational Lyme disease (a mother infected with Lyme in her pregnancy) may result in adverse outcomes for the baby/fetus even in mothers who were treated for Lyme (11%). This number jumps significantly (50%) if the mother has NOT been treated for Lyme disease. 

The review states: “A meta-analysis showed significantly fewer birth outcomes in women reported to have been treated for gestational [Lyme] (11%, 95% Cl 7-16) compared to those who were not treated during pregnancy (50%, 95% Cl 30-70) providing indirect evidence of an association between gestational Lyme disease and adverse birth outcomes.”

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

• The authors note, with regard to Lyme testing, “all currently available testing options are imperfect. Thus the inadequate sensitivity of serological tests in early LD necessitates physician awareness of LD and careful clinical assessment supported by laboratory tests when appropriate.”, and “…it is recommended that physicians continue to remain thorough in their diagnosis and treatment of LD in pregnant women…."
• A recommendation of “prompt diagnosis and treatment of [Lyme disease] during pregnancy..”
• While animal studies were outside the scope of the review, the authors noted “Overall there is some evidence that B. burgdorferi infection in pregnant animals can result in infection of the newborn, fetal death, and fertility issues.”
• New research is needed to address knowledge gaps identified in the review.

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

• Standard Lyme testing (two-tier serology using an ELISA and a Western Blot) on infants may NOT pick up infections in newborns, in part, due to an immature immune system.  Infected infants may appear 'healthy' at birth, but should be carefully followed for emerging signs and symptoms which may not appear until weeks, months or years later.  
• A new case definition for Congenital Lyme borreliosis must be developed, as it is quite obvious that babies infected in-utero will not have a requisite tick-bite and may not have an expanding erythema migrans rash of greater than 5cm, positive two-tier testing and/ or exposure in an endemic area. 

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Where Do We Go from Here?

• Next steps must include urgent meaningful research on the subject matter of in-utero transmission and we look forward to continued partnership and collaboration with PHAC and with other professional/medical organizations such as the Society of Obstetricians and Gynecologists (SOGC), Canadian Association of Schools of Nursing (curriculum development) and of course the Registered Nurses Association of Ontario who passed the Patient First treatment of Ontarians with Lyme disease resolution.  https://www.lymehope.ca/news-and-updates/registered-nurses-association-of-ontario-rnao-focuses-on-lyme-disease

• LymeHope has requested that PHAC facilitate a multi-disciplinary working group to specifically address in-utero transmission and congenital Lyme borreliosis and the issues identified above.  We have already spoken with several Canadian and International medical professionals/scientists and experts specializing in areas such as pediatrics, ob/gyn, pediatric infectious disease, neonatology, epidemiology, biology and microbiology who are interested in participation.  We believe this group will become a reality and trust that the Federal government will take notice and ACTION this initiative with the utmost urgency for the funding and formation of this group.

 
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

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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
www.lymehope.ca
 
#workingtogether
#babiescanbebornwithlyme
#congenitallyme
#lyme
#lymehope
#lymemomsunite

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