Public Comment at HHS Tick-Borne Disease Working Group Meeting, Washington, DC

Speech to HHS Tick-Borne Disease Working Group - Jan 28, 2020

January 28, 2020:
Maternal-Fetal Transmission of Lyme Disease.

My name is Sue Faber, I am a registered nurse from Canada, co-founder and President of LymeHope.
 
The issue of maternal-fetal transmission of Lyme disease has urgent and far reaching pubic health implications which require not only clear public acknowledgement of the risk of transmission but also collective, dedicated research efforts. 
 
In 1985 a case report titled ‘Maternal Fetal transmission of the Lyme disease spirochete’ was  published.  Histologic examination of the baby who died shortly after birth revealed the Lyme spirochete in the spleen, kidneys and bone marrow.  Shortly thereafter the CDC published that ‘transplacental transmission of B. Burgdorferi has been documented.’  Similar reports were issued by the WHO in 1986 and Canadian Federal health authorities in 1988. 
 
Citations for all this published documentation can be found on our LymeHope website.
Compilation of literature here: https://www.lymehope.ca/advocacy-updates/march-03rd-2018
 
In the years following, several more case reports by authors in US and Europe were published - identifying not only transmission of Lyme from an infected mother to baby but also highlighting issues of asymptomatic infection and seronegativity in mothers.  There have also been cases whereby the mother was treated with varying courses of antibiotics for Lyme disease and yet Bb was still transmitted to the baby.
 
Furthermore, cases were reported by Dr. Tessa Gardner, Pediatric Infectious Disease physician in the 4th and 5th edition of the prestigious reference textbook Remington and Klein, Infectious Diseases of the Fetus and Newborn infant.  She identified babies with congenital Lyme who were seronegative by ELISA yet positive by Lymphocyte proliferation assay. Dr. Gardner identified a framework to start characterizing congenital Lyme borreliosis.
 
There have been several case reports of healthy newborn outcomes following maternal Lyme disease and epidemiological studies conducted in the 1980’s are often pointed to as supporting the idea that there is no identifiable congenital syndrome and transmission if it does occur is rare – but if you read those papers in detail, authors themselves point out limitations of those studies including small sample sizes, limited follow-up with respect to long term sequalae and need for larger scale research. 
 
In 1989, Dr. David Axelrod , the New York State Health Commissioner at the time was quoted in a New York times article on Lyme disease as stating, ‘We do know the Lyme bacterium crosses the placenta. Most babies born of mothers with treated Lyme disease have been healthy yet the long-term impact of this disease on the developing fetus and newborn is not entirely clear.’ 
 
I ask you, as a committee, what about the mothers like myself, who didn’t remember a tick bite, who were asymptomatic and remained untreated in our pregnancies and have children sick and unable to access comprehensive care, often told, congenital Lyme doesn’t exist.  What about seronegative mothers and seronegative babies? 
 
​We must address the very real issues which families and children face today, it’s time we take this urgent issue seriously.  Children need our help, concerned mothers and fathers need to be heard.  We must act.'

On January 28, 2020, Sue Faber, RN, Co-founder and President of LymeHope spoke for 3 minutes in the public comments period at the HHS Tick-borne Disease working group in Washington DC.
She is honoured to have this opportunity to speak out on behalf of children and families all over the world affected by the very real, documented concern of mother to baby transmission of #Lymedisease.

This alternate mode of transmission has paradigm-shifting implications and urgent research, investigation and collaboration must be a top priority.  Parents and families affected need to be heard.  Children affected by this alternate mode of transmission must have access to care and treatment without having to pay out of pocket. 

For more information the literature that exists around this alternate mode of transmission, you can download citations, slides and compilation of the literature here:
https://www.lymehope.ca/advocacy-updates/march-03rd-2018