LymeMIND 2022 Panel Presentation The Value Partnerships: A multi-disciplinary Approach to Addressing Perinatal Transmission of Lyme disease
On November, 2022, Sue Faber from LymeHope moderated and participated in a panel discussion for the Cohen Foundation LymeMIND conference titled: The Value Partnerships: A multi-disciplinary Approach to Addressing Perinatal Transmission of Lyme disease. This session included a powerful opening video produced by the LymeLight Foundation, as well as contributions from several expert panelists.
Lyme Disease and Pregnancy: State of the Science and Opportunities for Research Support
Thursday, April 29th 5:00 – 6:30 pm EST
For more information and to register for this interactive webinar click here:
Lyme disease infects nearly half a million men, women, and children across the U.S. each year. The third most prevalent infectious disease (behind Chlamydia and Gonorrhea, both STD’s), Lyme disease saddles a large percentage of its victims with lingering symptoms, diminishing their health, well-being, and quality of life. When the disease strikes children, it is especially heartbreaking, as little ones suffer early in life, never experiencing a life without the pain of disease. While it is widely accepted that Lyme disease is spread by a tick bite, it is less well known that the agent of Lyme disease, Borrelia burgdorferi, can cross the placenta, both infecting, and causing harm to, unborn children.
This webinar will provide researchers the opportunity to learn about the application process and seek guidance from NIH program officers. Don't miss this opportunity to learn how to gain access to newly available funds from the Federal government.
A ground-breaking research study on Lyme and Pregnancy has launched, led by Canadian Principal Investigator Dr. Elizabeth Darling and team from the McMaster University Midwifery Research Centre. LymeHope is honoured to partner and collaborate in this important endeavour, facilitating the 'birth' of a new era of research focused on assessing perinatal (mother-to-baby) transmission of Lyme disease - the first North American research into this alternate mode of transmission in 25 years!
This research leads with principles of patient engagement - which seeks, values and welcomes the perspective and priorities of people with lived experience. For decades, mothers, healthcare providers and advocacy groups have been expressing concern regarding maternal-fetal transmission of Lyme disease and voicing concerns about the short and long-term health impact of this alternate mode of transmission on babies and children. This research re-opens the door to this issue and 'gives voice' to those who have been impacted.
The online survey and opportunity to participate in online focus groups will be open to anyone living in Canada, the Unites States, or globally. This project will lay the groundwork for further research on perinatal transmission of Lyme disease.
In addition to recruiting people who have Lyme Disease, the study needs people who DO NOT HAVE LYME but have at any time been pregnant to participate in a survey. If you have ever been pregnant, completing the survey will help contribute to needed research about Lyme Disease and Pregnancy.
The survey is available in both English and French.
How can I participate in this research?
For detailed information, specifics on this study and criteria to participate, please click button below:
French posters to download and share on social media
English posters to download and share on social media
Please join us in spreading the news and sharing this important study opportunity through your networks/social media platforms to recruit eligible participants for the study. Posters below can easily be downloaded and shared through various social media platforms (Facebook, Twitter, Instagram), websites, medical/health practitioner offices and newsletters.
Alberta Health Recognizes Lyme can be transmitted from Mother to Unborn Child and Risk of transmission through blood donation.
In a section titled Prevention, The Government of Alberta currently acknowledges:
'A pregnant woman may be able to pass Lyme disease to her unborn child, but proven cases are rare. Lyme disease hasn't been shown to cause birth defects or fetal death.'
They also state, 'If you have active Lyme disease, don't donate blood. The bacteria that cause the illness can be transmitted this way.'
'Current as of June 9, 2019'
One head-scratcher - if a mother can transmit Lyme to her baby, wouldn't that mean that Lyme can be spread human to human? So the statement they make 'cannot be spread from person to person' would appear to be incorrect. (As a note, several of the case reports of congenital transmission of Lyme were in cases where the baby was born and later died with Bb spirochetes identified in fetal tissues - citations below:)
Schlesinger PA, Duray PH, Burke BA, Steere AC and Stillman MT. Maternal-Fetal transmission of the Lyme disease spirochete, Borrelia Burgdorferi. Ann Intern Med. 1985;103(1):67-8.
Lavoie PE, Lattner BP, Duray P. H et al. Culture positive, seronegative, transplacental Lyme borreliosis infant mortality. Arthritis Rheum; 1987. p. S50.
Weber K, Bratzke H, Neubert UWE et al. Borrelia Burgdorferi in a newborn despite oral penicillin for Lyme borreliosis during pregnancy. Pediatric Infectious Disease Journal Vol 7, No 4, 286-289, 1988
There have also been some cases of babies infected with Lyme with various manifestations/adverse outcomes.
Macdonald, AB. Gestational Lyme borreliosis. Implications for the fetus. Rheum Dis Clin North Am. 1989;15(4):657-77.
Dattwyler R, Volkman D and Luft B. Immunologic aspects of Lyme borreliosis. Review of Infectious Diseases Vol 11(6) 1989.
Gasser R, Dusleag J, Reisinger E, Stauber R etal. A most unusual case of a whole family suffering from late Lyme borreliosis for over 20 years. Angiology. Vol 45, No 1. 1994
Trevison G, Stinco G, Cinco M. Neonatal skin lesions due to a spirochetal infection: a case of congenital Lyme borreliosis? Journal of Dermatology, 1997, 36, 677.
Clearly it is time for Health Canada and the Public Health Agency of Canada to acknowledge what has been known and documented for the last 35 years. Lyme can be transmitted from a mother to her baby and, given that Lyme can be transmitted through the blood from a mother to her baby, this would also indicate there is theoretical risk that Lyme can be transmitted through blood donations.
Authors from a 2018 article have also indicated that asymptomatic, infected individuals with Lyme could donate blood. (it is open access so you can read full article by clicking link below):
Pavia CS, Plummer MM. Transfusion-Associated Lyme Disease - Although Unlikely, It Is Still a Concern Worth Considering. Front Microbiol. 2018;9:2070. Published 2018 Sep 4. doi:10.3389/fmicb.2018.02070
Highlights important points:
'On the other hand, it has been shown in one clinical study (Wormser et al., 2001) that 11% of 93 patients with B. burgdorferi in their bloodstream did not present with any objective clinical symptoms except for having the EM rash, and clinical experience (as mentioned above) suggests that for some patients the EM rash may go unrecognized. Thus, as suggested further by Ginzburg et al. (2013), it is entirely plausible that spirochetemic patients with an unrecognized EM, or one of shortened duration, might present themselves as potential donors.'
'However, no serologic testing or molecular analyses are routinely done which would be needed in order to fully ensure that potential asymptomatic, Borrelia-infected, donors are excluded from the donor pool' (Ginzburg et al., 2013)
This interesting video shows Lyme in the blood stream in a mouse model:
Links to Alberta Health public guidance on Lyme, under 'Prevention'
Alberta Health Public Health Disease Management Guidelines:
With Tears we say GoodBye. Thank-you Anne Kingston for Amplifying the Voice of the 'Impatient Patient'
One of Canada's leading journalists from Macleans Magazine, Anne Kingston has died. Such a deep loss for Canada.
Anne encouraged me and she inspired me. The article she wrote in 2017 'How the New Impatient Patient is Disrupting Medicine' on our advocacy work with Lyme disease opened new doors and conversations and the importance of patient advocates being welcomed and invited to the table.
We still have a long way to go but I believe that LIGHT is peeking in and Anne was definitely a 'light-bearer' - using her pen and her expertise.
This is part of a card I wrote Anne. It was sitting on my desk today when I found out about her passing. I had planned on popping it in the mail after I heard she wasn't well. It's too late to share these words with her, but I'd like to share them with you.
Anne, thank you for making me brave, bold and giving me courage.
Thank you for your incredible, detailed, objective journalism and how much you cared about Truth, Integrity and Kindness in all matters. You gave many patients a voice when they felt muted and you gave us a strong platform to be heard.
You will be deeply missed and always remembered and appreciated.
Love, Thankfulness and Tears
Sue Faber RN BScN
Co-Founder and President
Anne Kingston's Three Articles in Macleans Magazine on Lyme disease
The CDC has updated their website today in three different spots to address the very important issue of maternal-fetal transmission of Lyme disease, from an infected mother to her fetus/baby.
The first update is in the Transmission section under 'Are there other ways to get Lyme disease' which states:
'Untreated Lyme disease during pregnancy can lead to infection of the placenta. Spread from mother to fetus is possible but rare. Fortunately, with appropriate antibiotic treatment, there is no increased risk of adverse birth outcomes. There are no published studies assessing developmental outcomes of children whose mothers acquired Lyme disease during pregnancy.'
The second update is in the Lyme Disease FAQ under the question 'I am pregnant and think I have Lyme disease, what should I do? which states:
'If you are pregnant and suspect you have contracted Lyme disease, contact your physician immediately.
Untreated Lyme disease during pregnancy can lead to infection of the placenta. Spread from mother to fetus is possible but rare. Fortunately, with appropriate antibiotic treatment, there is no increased risk of adverse birth outcomes.* There are no published studies assessing developmental outcomes of children whose mothers acquired Lyme disease during pregnancy.'
* Silver HM. Lyme disease during pregnancy . Infect Dis Clin North Am. 1997 Mar;11(1):93-7.
The third update is to the Pregnancy and Lyme Disease poster.
Clearly addressing the possibility of transmission from an infected mother to her baby is so important and we hope and trust this will open new doors for families who have expressed concern that their children were infected in-utero, so as to access medical treatment, support, follow-up and care. This update also provides confirmation of the necessity for urgent, dedicated, scientific and medical research, in this area.
It is clear that the issue of maternal-fetal transmission of Lyme disease requires urgent research and a collective, multi-disciplinary, 'all-hands on deck' approach to address this alternate mode of transmission.
We are thankful for CDC leadership on this specific issue. Other countries around the world will take note.
It is time that ALL voices are heard, validated and acted upon. We can and must work together for the sake of our children and future generations.
It is also important to note that the HHS Tick-Borne disease working group subcommittee Clinical Aspects of Lyme Disease, recently issued a report which also included a section:
Priority 4: Further evaluate potential maternal-fetal transmission of Lyme disease and of congenital Lyme disease.
Published Literature on Maternal-Fetal Transmission of Lyme disease below. Taken from our compilation of the literature here: https://www.lymehope.ca/advocacy-updates/march-03rd-2018
Canadian CTV National News: https://www.ctvnews.ca/health/mothers-on-a-mission-to-prove-lyme-disease-can-be-passed-to-unborn-child-1.4261403
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:
Last Thursday, July 11th, 2019 in Toronto, MDs including Dr. Ralph Hawkins (General Internist, Clinical Associate Professor of Medicine University of Calgary and Fellow of the Royal Society for Public Health) and advocate Jennifer Wheeler as well as Sue Faber (RN) and Tamara House from LymeHope and Jim Wilson President of CanLyme met in person/teleconferenced with Ontario Minister of Health Honorable Christine Elliott.
This meeting was graciously offered by the Health Minister in response to an April 10th/19 question by MPP Randy Hillier (Lanark-Frontenac-Kingston) on behalf of his constituent Jennifer Wheeler and her son Nicholas. Further details on the Wheeler family Lyme story and journey of devastation, heartache, bravery resilience and determination to facilitate change for Lyme sufferers can be found here.
Canadian Lyme sufferers from across Ontario and every province in Canada continue to face systemic barriers to appropriate diagnosis, treatment and care and these numbers grow on a daily basis. The Ticking Lyme Bomb petition has now collected over 85,000 signatures and over 14,000 personal comments from every province and territory across Canada – a brave, united, powerful collective Voice calling for urgent change that is anchored in patient priorities and evidence-based medicine. We continue to encourage all Canadians to sign, comment and share the petition.
The Wheeler family is joined by Lyme sufferers throughout Ontario and indeed across Canada who are often tragically caught in the middle of a devastatingly political disease, a tug of war which is wrought in senseless controversy which continues to diminish, ignore and even deny their collective suffering - truly a 'Ticking Lyme Bomb.' As a result, Canadian men, women, children and mothers have been brave enough to speak out about how they have been denied appropriate diagnosis and treatment, forced to seek medical treatment outside of Canada, experienced abandonment by our healthcare system which currently only addresses acute manifestations of Lyme disease and is silent to Canadians who don’t fit into the narrow case-definition of Lyme.
Those with late stage disease, those who never remembered a tick-bite in an endemic area, those who don’t have positive Canadian two-tier testing, those with persistent symptoms and chronic illness despite early antibiotic intervention after a tick bite, those who may have been infected from birth, those who are concerned of possible infection through sexual contact or blood supply contamination– this enormous and growing cohort of untold thousands of Canadians – have been left without access to the compassionate care and medical treatment that they need and deserve. This MUST change. This WILL change.
At this meeting, Minister Elliot shared that she wanted to not only listen but also take meaningful action as soon as possible to work in collaboration and partnership with advocates and leading Lyme experts. Some of the topics which we discussed were issues around misdiagnosis, inadequacies of Canadian testing, in-utero transmission, concerns of blood supply safety, supporting scientific research which is anchored in patient priorities, establishing and supporting centres of excellence for adult and pediatric populations and the urgent necessity for frontline clinician/nursing education on the complexities of Lyme disease beyond an acute infection.
We also discussed steps to setting up a new Lyme Disease and Tick Borne Illnesses Task Force to implement recommendations already identified by the former Lyme Disease and Tick-borne Illnesses Task Force. We also requested setting up a sub-committee within the Task-Force to specifically examine and address in-utero transmission of Lyme disease as many families are concerned by this alternate mode of transmission which was first identified by Canadian Federal Public Health Authorities back in 1988.
Here in Ontario, we are so thankful for the tireless work of advocacy and patient support organizations such as Lyme Ontario and Ontario Lyme Alliance and the strong voice and action of MPP Michael Mantha and his recent motion on June 6, 2019 which passed in the provincial legislature calling on the government to take the necessary next steps to address Lyme disease and adopt and implement the 10 recommendations of the Lyme Task Force report. We are encouraged and excited by the work and dedication of Rossana Magnotta and the G. Magnotta Foundation and the G. Magnotta Lyme Disease Research Lab at the University of Guelph which is run by Dr. Melanie Wills - a highly respected leader in Lyme research and member of the Canadian Lyme Consortium.
The Registered Nurses Association of Ontario (RNAO) has already taken action and voted through a resolution in April 2018 on Lyme disease titled ‘Patient First Treatment for Ontarians with Lyme Disease’ which states: ‘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.’
We will continue to work together to embark on a socio-medico shift in how frontline healthcare providers, patients and the public view tick borne diseases and to collectively implement changes which ensure that Ontarian's receive the medical diagnosis, treatment and care they deserve within the Province and ultimately return to health and productivity. We are so thankful for Hon. Christine Elliot, for her strong and decisive leadership, standing in the gap, listening and empathy and ultimately her willingness to act on behalf of Ontarian's with Lyme Disease. We believe that Ontario can and will lead the way!
Please join us at the inaugural LymeHope Benefit Concert which features two of Ottawa’s top acts coming together for a musical event like none other.
Hosted by Ottawa’s Tara Shannon, together with LymeHope founders Sue Faber and Jennifer Kravis, the evening offers a mix and mingle starting at 7pm where guests will have access to information about Lyme Disease and can speak with members of the Lyme community to learn more about the often misunderstood illness.
The musical celebration starts at 8pm with a performance by event host, country-soul singer/songwriter Shannon, who will share her own journey with Lyme through songs and stories. Special guests, The Commotions, Ottawa’s original 10 piece soul/funk/R&B band will bring the audience to their feet doing what they do best - “reclaiming the spirit of soul” as musical director Brian Asselin has so aptly stated...which is why they are a perfect fit for this event...as Lyme Disease sufferers and their families are often trying to reclaim theirs.
All proceeds will be directed to LymeHope.
Tickets available for purchase at:
If you can't attend but wish to support LymeHope's work to advance education and research on the subject of Lyme & related diseases in Canada, you may donate on the homepage of our website: www.lymehope.ca
*Please note we cannot issue tax receipts at this time.
HOPEFUL news about Lyme disease in Canada!
Today MPP Randy Hillier (Lanark-Frontenac-Kingston) addressed the Honourable Ontario Health Minister Christine Elliott on behalf of his constituent Jennifer Wheeler and her son Nicholas.
Watch and Listen to MPP Hillier’s question and Honourable Minister Elliot’s response here:
Nicholas is suffering from Lyme disease and his mom, Jennifer Wheeler and her husband Josh were reported to Children’s Aid by a doctor from CHEO after she was forced to seek treatment for her son outside of Canada and there was a disagreement with the course of treatment.
The treatment the Wheeler's chose was what helped their son to improve his quality of life, and helped him to regain his health. Their doctor in Ontario who wanted to help was also inappropriately reported to the College of Physicians and Surgeons. Both reports to CAS and the College were unfounded, and now Jennifer is working with CHEO, MPP Randy Hillier, LymeHope, MD's, RN's, Lyme advocates, and now the Honourable Minister of Health of Ontario Christine Elliott to put into place a pilot program aimed to improve diagnostics and treatment for those who face Lyme Disease.
MPP Hillier stated: “Ontario’s health system often treats people with Lyme in a reprehensible and atrocious manner..”.
He asked Minister Elliott if she would meet Jennifer (and her team of professionals) “to discuss a pilot project to reform these outdated attitudes and harmful practices and help people who are suffering with Lyme disease”.
Some politicians are willing to listen and will take action! Please consider thanking MP Hillier for raising such a critical issue and asking / encouraging your MPP to support this.
Are you a Canadian outside of Ontario? Do the same in your own Province. Google “how to find [my Province] MPP/MLA email”. Share MPP Hillier’s video and ask your representative if they would consider asking your Provincial Health Minister the same question.
Sue Faber, Jennifer Kravis, Tamara House
I am writing to let you know many of your constituents are also suffering from Lyme disease and are unable to access any care or treatment in Ontario due to outdated and insufficient guidelines. This is an urgent non-partisan health crisis affecting many Ontarians, adults, children and babies alike. It is also causing huge waste in our health system and putting all of us at risk.
Please join MPP Randy Hillier in calling for and supporting a pilot project led by the Honourable Christine Elliott, Minister of Health, which must involve patients and their experts, whose voices continue to be ignored in favour of the abysmal status quo. It’s time for real change.
[your name & contact information]
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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If you haven’t already, please continue to sign, comment and share this petition.
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:
Check out the updated codes for yourself..on link below
Lyme and Pregnancy Resources:
LymeHope Presentation on Maternal Child Transmission of Lyme Disease:
32 Years of documentation on transplacental (mother to child) transmission of Lyme disease/congenital Lyme/adverse outcomes:
LymeHope Updates on Lyme and Pregnancy/Congenital Lyme
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/
33 Years of Documentation of Maternal-Child Transmission of Lyme Disease and Congenital Lyme Borreliosis - A Review - by Sue Faber, RN, BScN
'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.”
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.
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.
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.
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
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!