Petition update

News: Congenital Lyme Borreliosis recognized by WHO!

Canadians Concerned About Lyme Disease

Aug 19, 2018 — 

Several weeks ago, the World Health Organization (WHO) updated the medical “ICD-11 Codes” and included several new codes for “Lyme Borreliosis” related medical conditions – including: 1C1G.2 Congenital Lyme borreliosis.  You can see for yourself here: https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/756596252

This change was prompted by the tireless work of Jenna Luche-Thayer and the Ad Hoc Committee for Health Equity (Jennifer Kravis is one of the volunteers on this global committee).  This committee submitted numerous Lyme borreliosis related conditions to the WHO in the last round of ICD Code updates, and this resulted in several new ICD codes being recognized. 

 What are ICD codes? 

The International Classification of Disease, or “ICD Codes”, is a system of medical coding created by the WHO for documenting diagnoses, diseases, signs and symptoms and social circumstances. ICD Codes are used globally by medical providers to “code” diseases and symptoms – every time you visit your medical provider, he or she will input the ICD codes associated with your visit.  ICD Codes are very important because they are used to determine if you are eligible for certain tests, reimbursement under insurance plans, they are used to track how prevalent diseases are, and ultimately, they determine statistics, research and funding. If there is no ICD Code, it’s as if the disease ‘doesn’t exist’.

Global Recognition of In-utero Transmission of Borrelia Burgdorferi (Lyme Disease):

The global recognition and validation by the WHO of this alternate mode of transmission from an infected mother to her baby in-utero is very significant.  

Lyme Borreliosis is not simply a zoonotic disease transmitted by infected ticks limited to certain geographic “endemic” areas – but can also be transmitted person to person, mother to baby in-utero.  Acknowledging and confronting this reality head-on, will result in upheaval, rethinking, reordering, reinvestigating and re-prioritizing. However, we have no choice but to act with the highest integrity, impartiality and honesty.   

At LymeHope we have been ringing the alarm bells about this alternate mode of transmission for the last year and a half.  Sue Faber had raised this issue – speaking as a witness before the Parliamentary Standing Health Committee in June 2017. 

Sue’s full HESA testimony can be found here: https://youtu.be/-gByuqmZBNk

Public Health Agency of Canada Response to Transplacental Transmission of Borrelia Burgdorferi – Past and Present:

In 1988, Health and Welfare Canada reported on transplacental transmission in their Health and Welfare Canada Weekly Report.  This same document was re-published in the Canadian top-tier peer-reviewed medical journal – the CMAJ.   https://www.lymehope.ca/advocacy-updates/health-and-welfare-canada-1988-report 

It has been 30 years since this report was published and yet most physicians and general public are completely unaware of the potential for mother to child transmission of Lyme disease.  

We are deeply concerned that this serious alternate mode of transmission of Lyme disease has not been addressed by the Public Health Agency (PHAC) since this 1988 report.  This disease is affecting the lives and futures of Canadians, and we believe that PHAC has a duty and responsibility to all Canadians to act and take this alternate mode of transmission seriously.

 The current denial of transplacental transmission  is puzzling as it is contradictory to the statement made in the 1988 report and further-more contradictory to the WHO’s current recognition of Gestational Lyme borreliosis.  This also casts doubt and indeed negates the lived suffering and struggle of Canadian families who are concerned about in-utero transmission - many of whom (including children) wrote personal letters to then Minister of Health Honorable Jane Philpott which were delivered to her in August 2017. 

LymeHope has identified that research and urgent investigation of transplacental transmission of Lyme disease is needed and requires an all-hands-on-deck, streamlined, multi-disciplinary approach.  We have urgently requested that PHAC initiate the formation of a multi-disciplinary focus group on congenital Lyme borreliosis to examine this alternate mode of transmission with transparency, integrity and scientific rigor, with patients as trusted partners.  

Literature on Transplacental Transmission:

Transplacental transmission, adverse outcomes and reports of congenital infection of Borrelia burgdorferi have been clearly documented over the last 32 years (1985 to 2018) by multiple international physicians, pioneering researchers and scientists including Dr. Willy Burgdorfer (after whom Borrelia burgdorferi was named), Dr. Alan Steere (one of the primary investigators of Lyme disease in Lyme Connecticut), Dr. Alan MacDonald (pathologist who documented Borrelia burgdorferi in tissues of fetal autopsies) and Dr. Tessa Gardner (Harvard trained Pediatric Infectious Disease Specialist). 

Dr. Gardner authored an entire chapter on Lyme disease including an extensive review and analysis of Congenital Lyme Borreliosis in the 4th and 5th edition of Remington and Klein Infectious Diseases of the Fetus and Newborn Infant (an authoritative reference medical textbook).

Transplacental transmission was not being reported as ‘inconclusive, plausible or possible’, it was documented as having definitively happened.  We have compiled a document with direct quotes from the medical and scientific literature as it relates to Congenital Lyme Borreliosis here: https://www.lymehope.ca/advocacy-updates/march-03rd-2018

In 2005, the U.S. National Institute of Health (NIH) advised “If you are pregnant, you should be especially careful to avoid ticks in Lyme disease areas because infection can be transferred to your unborn child.  Although rare, such a prenatal infection may make you more likely to miscarry or deliver a stillborn baby."

The historical documentation is now being affirmed by the WHO and amplified by the lived suffering of entire families who are sick with Lyme disease - many concerned and rightfully so, that the infection was passed through pregnancy and furthermore, concerns of inter-generational infection.  The alarm-bells are ringing, and for very good reason.  

Frontline healthcare professionals and mothers themselves need to be aware of the risk of maternal-fetal transmission. Families who come forward and identify that they are concerned that Lyme could have been passed on to their children need to be taken seriously. Urgent action is needed.

If you are concerned that Congenital Lyme borreliosis has affected your family/children, please stay tuned as we will be announcing an important survey soon so that we can start identifying the extent of this problem in Canada and indeed globally.

Thanks to Jenna Luche-Thayer and all the Committee members 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:
https://www.linkedin.com/pulse/press-release-ground-breaking-recognition-lyme-11th-luche-thayer

Please sign, comment and share this important Canadian Petition and this post on social media.  We now have over 67,700 signatures and growing each and every day.  

Thank you as always for your continued support and engagement.

Jennifer Kravis & Sue Faber

Co-founders

LymeHope

www.lymehope.ca

#LymeHope

Please follow us on Facebook at: https://www.facebook.com/lymehopecanada/

On twitter at: @lymehopecanada


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