BREAKING NEWS: The Public Health Agency of Canada Secretly Implements Global Act Against Children with Congenital Lyme

[CanLyme Note: As a result of the allegations revealed in the below article by Jenna Luche-Thayer, CanLyme wrote the following letter to Canadian leaders, sent December 21st, 2018,

“Dear Prime Minister Trudeau, Honorable Minister Ginette Petitpas-Taylor, Honorable Minister Jody Wilson-Rebould, Dr. Mithani, Dr. Tam, Honorable Andrew Scheer, Elizabeth May and Jagmeet Singh,

The news that we have received from within the World Health Organization (WHO) is very disturbing to say the least…

https://www.linkedin.com/pulse/breaking-news-public-health-agency-canada-secretly-act-luche-thayer/?trk=portfolio_article-card_title

Has Canada lead the charge to have congenital Lyme disease removed from the ICD-11 codes as has been reported to us?

As you are well aware a great deal of time, effort and Canadian tax payer’s money was put into a systematic review (SR) of gestational Lyme disease (LD) and the conclusion included these statements, “The global evidence does not fully characterize the potential impact of gestational LD, and future research that addresses the knowledge gaps may change the findings in this SR. Given the current evidence; prompt diagnosis and treatment of LD” during pregnancy is recommended.”

There is direct evidence of placental infection of LD in the SR, “Amongst the 59 pregnancies identified in the case studies in this SR, 33 (56%) pregnant women were tested for LD; but diagnostic methods currently considered reliable (direct detection methods as described above or the two-tier EIA followed by the Western Blot) were used in only four cases, Table 3 [27,41,46,64,69,72,73]. In five other cases, the mother was not diagnosed with LD by clinical symptoms or a diagnostic test, but instead was considered retrospectively to have suffered from LD when the cause of fetal or newborn demise was investigated and possible Bburgdorferi spirochetes were identified in the placenta (n = 3) and/or fetal tissue (n = 3) [49,51

Clearly the evidence is there as to why congenital LD absolutely needs to be in the ICD-11 codes.  If there is no code for this, there will be no tracking of congenital LD.  The SR findings were clear, the potential impact of gestational LD is not clear and further investigation is required in the form of direct research.  The gathering of incidence data via ICD codes is of great importance but here we have our country deliberately standing in the way, and doing so without following any due process.  We patient groups were not consulted on this stance yet stakeholder engagement is supposedly a cornerstone of Canadian health care.

As a member of an international ad-hoc committee, CanLyme participated in following due process, making evidence-based recommendations to the WHO which aided in having congenital LD added to the ICD-11 codes.  Due process set out at the WHO was circumvented when Canada went behind the backs of all of us around the globe.

What Canada has done clearly discriminates against children around the world with potential congenital Lyme disease. Those children officially do not count.  They are not worthy of collecting data on.  Absolutely disgraceful.

This is unacceptable on many levels and we request a meeting with Honorable Minister Petitpas-Taylor, Dr. Siddika Mithani, and Dr. Theresa Tam as soon as possible.

We also ask that full disclosure of what took place and at whose direction be related to all Canadian Lyme stakeholder groups.

Immediately the Canadian government must take steps to reverse the decision to remove congenital LD from the ICD-11 codes.

Regards,
Jim Wilson,
President,
Canadian Lyme Disease Foundation
www.CanLyme.org” ]

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The Public Health Agency of Canada Secretly Implements Global Act Against Children with Congenital Lyme

 

by Jenna Luché-Thayer, email jennaluche@gmail.com

Between the months of June and September 2018, the Public Health Agency of Canada (PHAC) secretly implemented a destructive political act against the health and well-being of children across the globe.

The secret is now out and will go global.

In a move that avoided consultation with the 193 countries represented by the World Health Organization (WHO), PHAC has unilaterally attempted to obstruct access to diagnosis and treatment for estimated millions of children suffering from congenital Lyme disease.

Congenital Lyme was introduced and validated through a rigorous vetting process for evidence-based medicine according to the WHO requirements for the International Classification of Diseases or ICD11.

The ICD is ‘a common global language’ for health professionals. The ICD is used to identify health trends, progress and threats and statistics worldwide. ICD is used by national health systems and program managers, data specialists, policy makers and others who allocate health resources and track national and global health.

ICD10 had approximately 14,400 codes whereas ICD11 represents more than 55,000 codes for disease diagnoses and identifying injuries and causes of death. ICD11 product is the result of a multi-year global effort that invited engagement from WHO’s 193 Member States. The process included patient groups, care givers, scientists, medical experts and pharmaceutical and insurance representatives among others.

WHO constructed an ICD11 Beta platform. This is a publicly accessible and transparent digital platform whereby all entries, rebuttals and discussions are on view for review and/or engagement.

WHO gave ICD11 stakeholders until March 30, 2017 to recommend new codes for medical conditions, diseases and their complications. On June 18, 2018 WHO released the stable version of ICD11 codes.

The global, all voluntary stakeholder group known as the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes (Ad Hoc Committee) participated in the ICD11 revision process. The Ad Hoc Committee submitted a report to WHO, The Updating ICD11 Borreliosis Diagnostic Codes: Edition One, and entered hundreds of peer-reviewed publications and recommendations for new Lyme codes onto the ICD11 Beta platform by March 29, 2017.

The validation process of the scientific publications submitted by the Ad Hoc Committee included a public review by WHO expert committees and advisors prior to the presentation of the new 1CD11 codes for Lyme on June 18, 2018. This included the peer reviewed publications for congenital Lyme. [1]

Efforts by the Ad Hoc Committee resulted in a 400 percent increase in the numbers of codes representing complications caused by Lyme. These codes included five life-threatening complications, and among these five was congenital Lyme borreliosis.

From June 18, 2018 until December 17, 2018, congenital Lyme was acknowledged and featured in the stable codes on the ICD11 Beta Platform as ‘1C1G.2 Congenital Lyme borreliosis’.

On December 17, 2018, the ICD11 Beta Platform showed a new comment entered by Team3 WHO. The comment stated the WHO ICD11’s Medical and Scientific Advisory Committee (MSAC) held a meeting on September 6, 2018. The MSAC meeting determined, “there is no concrete evidence in the literature that congenital Lyme borreliosis exists. MSAC members recommended that the concept of congenital Lyme borreliosis be removed from the ICD11.” [2]

Jenna Luché-Thayer, the Director of the Ad Hoc Committee, found many disturbing anomalies, e.g. the process did not follow WHO’s publicized ICD11 implementation calendar. Nor did the process meet the requirements and norms for transparency in the development of the ICD11. Examples follow:

 the MSAC September 6, 2018 meeting was not publicly announced

 the September 6, 2018 decision by MASC to have “the concept of congenital Lyme borreliosis be removed from the ICD11” was not available for stakeholder review or response on the ICD11 platform until December 17, 2018

 of all the 55,000+ conditions listed under the 25+ chapters headings on the ICD11Beta platform, there is evidence that only Lyme was interfered with by MASC following WHO’s June 18, 2018 announcement ‘the codes are stable’

Luché-Thayer then quickly contacted Senior United Nations (UN) and WHO officials and others deeply involved in the ICD11 process to confirm these breaches and seek answers as to why they had occurred.

Within minutes, Luché-Thayer received a written response from a senior member of the ICD11 process, stating action by MSAC “was in response to a request for the removal of Congenital Lyme borreliosis by the Public Health Agency of Canada (PHAC) who stated that there was little evidence of a specific syndrome resulting from congenital B. burgdorferi infection (in contrast to congenital Syphilis), for example…” [5] Apparently, external reviewers also had a role in this decision.

TO NOTE: There is no such syndrome as the ‘congenital Syphilis syndrome’. Both Lyme and Syphilis are spirochetal infections that cause an array of systemic complications and medical conditions, including life threatening complications. Congenital Lyme and congenital Syphilis share many adverse fetal outcomes. Unlike congenital Lyme, congenital Syphilis has multiple ICD codes that remain stable.

PHAC, however, apparently was successful in promoting the fraud to MSAC that only a ‘congenital syndrome’ requires a specific code.

In contrast to the pre-June 18, 2018 process requirements to recommend, validate and/or reject new codes, further analysis by Luché-Thayer found there was:

 no evidence the 16 peer reviewed publications entered into the ICD11 Beta platform for congenital Lyme borreliosis were reviewed by MSAC [1]

 nor any evidence these 16 publications were shared with external expert reviewers

 no names of the external expert reviewers who informed MSAC of their congenital Lyme findings, nor their qualifications

 no transparency as to who selected these external expert reviewers: was it PHAC?

 no disclosure of any of the supporting documentation/publications sent for the external review

 no disclosure regarding the supporting documentation/publications used by the external expert reviewers to recommend the removal of congenital Lyme borreliosis from ICD11

 no justification by MSAC to hold a closed door decision-making process to remove a code for a life-threatening medical condition detailed in case studies of human rights violations and on record with the Special Rapporteur for health human rights, as well as other UN offices and Special Rapporteur (as recorded in the Ad Hoc Committee Report submitted to WHO and two Ad Hoc Committee Reports testified to and accepted by Special Rapporteurs) [3] [4]

 

PHAC IS KNOWN TO UNDERMINE EVIDENCE-BASED SCIENCE AND DEMOCRATIC PROCESS

In addition to undermining children’s access to congenital Lyme diagnosis and care globally, PHAC deliberately biased the Canadian Lyme Guidelines development. “This was done by excluding preeminent and primary research on Lyme ‘because it was not authored by one of their country’s citizens or did not study their citizens’ or because the primary research, happened prior to an arbitrary date.

The Borrelia pathogens which cause Lyme and Lyme-like illness do not differentiate between nationalities. The absurdity of excluding studies ‘based on population’ particularly the multiethnic and multiracial populations found in Canada is an astounding act of impunity against the norms of medical and scientific review. In addition to excluding and suppressing sound science, other tactics have been used to maintain denial of the disease.

These Canadian processes routinely flout the laws, regulations and well-founded norms regarding transparency, accountability and stakeholder representation. In every case, critical and central questions were ignored, and stakeholder representation was reduced to empty theater.

Unlike most countries where ICDs are managed in public domain, the Canadian ICD codes are owned by an independent nonprofit known as the Canadian Institute for Health Information (CIHI). An institutional analysis of CIHI shows this ‘independent nonprofit’ may be an ‘Astroturf’ front for the Canadian Government. CIHI’s large executive board is almost entirely held by Government officials from key health agencies.

This arrangement benefits the Government of Canada. The Government of Canada would be required by law to undergo a series of public stakeholder engagements and provide justifications to any modifications made to the ICD if they ‘owned’ the codes.

An independent nonprofit, however, organized to do the Government’s bidding is under no such requirement. CIHI may therefore implement any and all Government policy related to the ICD far from public scrutiny. Such policies could be giving undisclosed directives on whether or not to report cases of Lyme or reimburse for Lyme treatment.

ICD10 version has been in place for approximately one decade and ICD10 recognizes three complications from Lyme. However, under the control of the CIHI and its board of Government officers, the Canadian version of ICD10 makes no reference whatsoever to these three complications and merely notes ‘Lyme Disease and disseminated Lyme, unspecified’. This means that for well over a decade, it is probable the data on Canadians with Lyme meningitis, arthritis or polyneuropathies has not been collected … and many suffering from these complications have been ignored.” [6]

 

IN CLOSING

MSAC has now put the entire ICD11 process into question and has opened ICD11 to extreme manipulations. MSAC and PHAC actions demonstrate more on-going evidence that the Lyme patient population experiences severe and ‘normalized’ institutional discrimination and human rights abuse. These actions also demonstrate more evidence of the Lyme-related corruption on record with the United Nations. [3][4]

The rogue actions by PHAC, and non-transparent actions by MSAC to remove the acknowledgement of one condition among 55,000, is a breach of trust and travesty and cannot qualify as a final decision.

The secret is now out and will go viral.

News of these atrocious acts by the Canadian Government will spread globally and are likely destroy the Canadian Government’s brand as a leader in human rights, democracy and universal health care.

…………………………….…………###…………………………………………

 

Jenna Luché-Thayer. 30+ years working globally on the rights of the marginalized.Former Senior Advisor to the United Nations and the US Government. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination, Inc. —Holding institutions accountable for political and scientific solutions. Email jennaluche@gmail.com

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[1] Example of science validated via ICD11 process:Congenital Lyme disease was recognized as potentially fatal complication. Borrelia burgdorferi can potentially infect the fetus and cause adverse fetal outcomes.

1.  Bale JF, Murph JR. Congenital infections and the nervous system. Pediatric Clinics of North America. 1992;39(4):669–690. doi:10.1016/s0031-3955(16)38370-5.

2.  Brzostek T. [Human granulocytic ehrlichiosis co-incident with Lyme borreliosis in pregnant woman–a case study] [in Polish] Przegl Epidemiol. 2004;58(2):289–94.

3.  Gardner T. Lyme disease. In: Remington JS, Klein JO, eds. Infectious Diseases of the Fetus and Newborn. 5th ed. Philadelphia: Saunders; 1995:447–528chap 11.

4.  Gardner T. Lyme disease. In: Remington JS, Klein JO. Infectious diseases of the fetus and newborn infant. 4th ed. Philadelphia: W B Saunders Co; December 13, 1994.

5.  Goldenberg RL, Thompson C. The infectious origins of stillbirth. American Journal of Obstetrics and Gynecology. 2003;189(3):861–873. doi:10.1067/s0002-9378(03)00470-8.

6.  Gustafson JM, Burgess EC, Wachal MD, Steinberg H. Intrauterine transmission of Borrelia burgdorferi in dogs. American Journal of Veterinary Research. 1993;54(6):882–890.

7.  MacDonald AB, Benach JL, Burgdorfer W. Stillbirth following maternal Lyme disease. N Y State J Med. 1987; 11:615–616.

8.  MacDonald AB. Gestational Lyme borreliosis. Implications for the fetus. Rheum Dis Clin North Am. 1989;15(4):657–677.

9.  Macdonald AB. Human fetal borreliosis, toxemia of pregnancy, and fetal death.

10. Zentralblatt für Bakteriologie, Mikrobiologie und Hygiene. Series A: Medical Microbiology, Infectious Diseases, Virology, Parasitology. 1986;263(1-2):189–200. doi:10.1016/s0176- 6724(86)80122-5.

11. Maraspin V, Cimperman J, Lotric-Furlan S, Pleterski-Rigler D, Strle F. Erythema migrans in pregnancy. Wiener klinische Wochenschrift. 2000; 111:933–40.

12. Markowitz LE, Steere AC, Benach JL, Slade JD, Broome CV. Lyme disease during pregnancy. JAMA: The Journal of the American Medical Association. 1986;255(24):3394. doi:10.1001/jama.1986.03370240064038.

13. Schlesinger PA, Duray PH, Burke BA, Steere AC, Stillman MT. Maternal-fetal transmission of the Lyme disease Spirochete, Borrelia burgdorferi. Annals of Internal Medicine. 1985;103(1):67. doi:10.7326/0003-4819-103-1-67.

14. Silver RM, Yang L, Daynes RA, Branch WD, Salafia CM, Weis JJ. Fetal outcome in Murine Lyme disease.Infection and Immunity. 1995;63(1):66–72.

15. Strobino BA, Williams CL, Abid S, Ghalson R, Spierling P. Lyme disease and pregnancy outcome: A prospective of two thousand prenatal patients. American Journal of Obstetrics and Gynecology. 1993;169(2):367–374. doi:10.1016/0002-9378(93)90088-z.

16. Weber K, Bratzke H-J, Neubert U, Wilske B, Duray PH. Borrelia burgdorferi in a newborn despite oral penicillin for Lyme borreliosis during pregnancy. The Pediatric Infectious Disease Journal. 1988;7(4):286– 288. doi:10.1097/00006454-198804000-00010.

[2] https://icd.who.int/dev11/Contributions/RecentComments

[3] Updating ICD11 Borreliosis Diagnostic Codes: Edition One, March 29, 2017. ISBN-10: 1978091796, ISBN-13: 978-1978091795. Copyright © 2017

[4] The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients: Edition One, March 6, 2018. ISBN-10: 1722988061, ISBN-13: 978-1722988067. Copyright © 2018)

[5] Jenna Luché-Thayer has over 30+ years working in the field of human rights and does not disclose any source/ally that may be under threat of retaliation.

[6] excerpted from $Lyme, How Medical Codes Mortally Wound Corruption and Scientific Fraud, by Jenna Luché-Thayer, illustrations by David Skidmore. Global Network on Institutional Discrimination, Inc. Copyright © 2018 All rights reserved. ISBN-13: 978-1727574630 ISBN-10: 172757463X

  1. Caroline Stengl on said:

    If this is true, and it sure sounds like we are getting reliable information, then Lyme patients and all Canadians have been betrayed by their own government…again.

  2. Yvonne Decelis on said:

    Please say this isn’t true…

    “Between the months of June and September 2018, the Public Health Agency of Canada (PHAC) secretly implemented a destructive political act against the health and well-being of children across the globe.

    The secret is now out and will go global.

    In a move that avoided consultation with the 193 countries represented by the World Health Organization (WHO), PHAC has unilaterally attempted to obstruct access to diagnosis and treatment for estimated millions of children suffering from congenital Lyme disease…”

    WHY WOULD ANYONE DO THIS?!?

  3. Rob Murray on said:

    We can all be very grateful for the continuing efforts of Jenna Luche’-Thayer and Dr. Hawkins for keeping the spotlight on this issue. PHAC indicated that they won’t lead on the issue of Lyme and TBD’s but they are very vigorous in defending their right of control and ownership of all the procedures surrounding Lyme and TBD’s and will not brook any outside scientific influence that strays from dogma or the status quo. What a shame and tragedy to see this happen to our Federal institutions that should help protect us but instead promotes misinformation on this life -threatening, life-altering disease that became too expensive for insurance companies to treat.

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