December 22, 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 and Kimberly Elmslie,
I am the Director of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes (or Ad Hoc Committee). The Ad Hoc Committee is fully voluntary international group including scientists, medical professionals, patient groups, human rights experts, lawyers, government officials, elected officials and we have Canadian members.
The Ad Hoc Committee was formed in 2016 to update WHO’s ICD codes for Lyme borreliosis and to demonstrate how the outdated and restrictive codes have been contributing to human rights violations.
Our principal report, Updating ICD11 Borreliosis Diagnostic Codes, was accepted by WHO and by UN Human Rights Council’s Special Rapporteur for the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. The Ad Hoc Committee met with the Special Rapporteur in his official capacity on June 7, 2017. The Special Rapporteur accepted all the Committee’s documentation including reports, books and videos, PowerPoint and verbal testimony; his Senior Human Rights Officer and Team Leader put them into record.
The Ad Hoc Committee produced a second report focusing on the corruption surrounding the Lyme epidemic and related human rights violations. We met with the Special Rapporteur responsible for the situation of human rights defenders in June 2018 to discuss this report and distributed it widely within the UN system and to many governments.
This second report, The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients: Edition One, provided rich details and cases studies from countries across globe where the human rights of Lyme patients and their human rights defenders have been systematically violated by government Lyme policies and practices. Human rights defenders of this vulnerable and marginalized patient population include clinicians, scientists and family members, particularly parents of children with Lyme.
Violations resulting from the Lyme policies and practices promoted by the Canadian government/Public Health Agency of Canada and their affiliates —including the Infectious Diseases Society of America— is featured in The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients: Edition One. The documentation of the situation in Canada describes violations in the following human rights treatises:
- Convention on the Rights of the Child (CRC)
- Convention on the Rights of Persons with Disabilities (CRPD)
- Convention on the Elimination of All Forms of Discrimination against Women (CEDAW)
- Convention Against Torture (CAT)
- International Covenant on Civil and Political Rights (ICCPR)
- International Covenant on Economic, Social, and Cultural Rights (ICESCR) ICESCR’s Article 12 states that steps for the realization of the right to health include those that:
—reduce infant mortality and ensure the healthy development of the child;
—improve environmental and industrial hygiene;
—prevent, treat and control epidemic, endemic, occupational and other diseases;
—create conditions to ensure access to health care for all.
- International Convention on the Elimination of All Forms of Racial Discrimination (ICERD)
Prior to the ICD11 March 30, 2017 deadline, the Ad Hoc Committee entered recommendations and 100s of peer reviewed publications supporting these recommendations onto the ICD11 Beta platform as part of the vetting process for establishing new codes. The record now includes hundreds of peer-reviewed studies —written by nationally and internationally recognized scientists and medical researchers from across the globe— that describe the many potential complications of borrelial infections.
The following stable version of the ICD11, released on June 18, 2018, showed an historic improvement over previous versions of ICD in terms of recognizing certain late stage conditions that can be chronic, as well as five-life threatening complications caused by the infection.
ICD10 Codes for Lyme borreliosis were limited to: A69.2 Lyme Disease; M01.2 Arthritis due to Lyme; G01 Meningitis due to Lyme and G63.0 Polyneuropathy due to Lyme.
1C1G Lyme borreliosis
1C1G.0 Early cutaneous Lyme borreliosis
1C1G.1 Disseminated Lyme borreliosis
1C1G.10 Lyme Neuroborreliosis
1C1G.11 Lyme Carditis
1C1G.12 Ophthalmic Lyme borreliosis
1C1G.13 Lyme arthritis
1C1G.14 Late cutaneous Lyme borreliosis
1C1G.1Y Other specified disseminated Lyme borreliosis
1C1G.1Z Disseminated Lyme borreliosis, unspecified
1C1G.2 Congenital Lyme borreliosis
1C1GY Other specified Lyme borreliosis
6D85.Y Dementia due to other specified diseases classified elsewhere; Dementia due to Lyme Disease
9C20.1 Infectious panuveitis; Infectious panuveitis in Lyme disease
9B66.1 Infectious intermediate Chorioditis; Infectious intermediate uveitis in Lyme disease
8A45.0Y Other Specified white matter disorders due to infections; Central Nervous System demyelination due to Lyme borreliosis
It appears that PHAC has created a very serious Canadian and global problem for the Trudeau administration, both in terms of undermining public trust in Canadian health policy and by making Canada responsible for human rights violations against children with congenital Lyme across the globe.
On December 18, 2018, I wrote a member of the ICD11 Medical and Scientific Advisory Committee (MSAC) to enquire ‘who/why/how’ the code for congenital Lyme had been removed. The main role of the MSAC is to advise on scientific content for ICD11 and they review all proposals, such as the one from PHAC
The MSAC member sent me the following written response.
From: member of MSAC
to: Jenna Luche-Thayer <email@example.com>
date: Dec 18, 2018, 6:07 PM
subject: Infections of the fetus or newborn
This was in response to a request for the removal of Congenital Lyme borreliosis by the Public Health Agency of Canada who stated that there was little evidence of a specific syndrome resulting from congenital B. burgdorferi infection (in contrast to congenital syphilis, for example) but rather that there was some evidence of an increased risk of adverse outcome or fetal abnormality.”
TO NOTE: There is no congenital syphilis syndrome nor is there any requirement for an infection to cause a ‘congenital syndrome’ in order to be have a code assignment. Syphilis and Lyme are documented in peer-reviewed publications to cause similar adverse fetal outcomes. The many ICD codes for congenital syphilis —the ‘spirochetal cousin’ to the Lyme spirochete — remain stable whereas the one code for congenital Lyme has been removed.
Kimberly Elmslie, the Vice-President Infectious Disease Prevention and Control Branch/PHAC has twice denied PHAC had anything to do with removing the code for congenital Lyme. Kimberly Elmslie, “The fact that we have never contacted WHO on congenital Lyme disease has also been confirmed directly to us by WHO officials.”
Is PHAC playing semantic games to cover their attempts to deny diagnosis and treatment for millions of babies and children across the globe?
PHAC’s removal of the ICD code for congenital Lyme will add the following human rights treatises violated by Government of Canada:
- African Charter on Human and Peoples’ Rights (ACHPR)
- European Convention for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment (ETS No.126)
- European Convention on the Protection of Human Rights and Fundamental Freedoms (ECHR)
- European Convention on Human Rights in Biomedicine (ECHRB) 5
- Council of Europe Framework Convention for the Protection of National Minorities (FCNM) 9(1)
On October 24, 2017, the Special Rapporteur on the right to health, presented his report on corruption to the UN General Assembly. Dainius Pūras told his audience, “In many countries, health is among the most corrupt sectors, this has significant implications for equality and non-discrimination …”
He noted domestic and global root causes of corruption, including those related to the pharmaceutical industry, others from “institutional corruption”. He emphasized the “normalization” of corruption in healthcare which includes practices undermining medical ethics, social justice, transparency and effective healthcare provision, as well as illegal acts.
Does the Trudeau administration know that Canada does not even use three of the four ICD10 codes for Lyme? Canada has ignored the ICD10 codes for Arthritis, Meningitis and Polyneuropathy due to Lyme.
I surely hope these harmful actions by PHAC and affiliates have not been driven by the short-term budgeting concerns of Canada’s national health system. Imagine what long-term costs to the national health system have incurred over the decades of undiagnosed meningitis, arthritis and polyneuropathies due to Lyme. Many undiagnosed patients with these complications are given costly, patented and harmful symptom modifying drugs—when these conditions can be treated with generic antibiotics.
In his 2016 annual report to the UN General Assembly, the Special Rapporteur presented key challenges that affect developed and developing countries alike; these issues include inequity and equality. He stated, “The right to health requires States to prioritize vulnerable populations in terms of health resources, law and policy, participation and empowerment, and in disaggregated data.” On a global scale, the Lyme and relapsing fever patient group easily qualify as a vulnerable patient group.
I also wish to bring to the attention of the Trudeau administration that the Canadian Human Rights Commission has not bothered to answer the many requests for a meeting with Canadian Lyme advocacy groups. Why it is possible for Canadians to meet UN officials responsible for human rights and then be roundly ignored by the authorities in the Canadian Human Rights Commission?
Given this history, does the Trudeau administration:
—plan to use any of the ICD11 codes for Lyme?
—plan to allow ongoing interference by PHAC with the human rights of those living with Lyme in every region of the world?
—understand that officials across the globe have become very aware this epidemic is expanding, it is a serious and life threatening disease of consequence and the infection cause immunosuppression and has been proven to persist?
—know that official positions regarding the Lyme epidemic are in the crux of rapid change to address these realities? (such as the 400 percent increase in ICD codes for Lyme and November 15, 2018 EU resolution for Lyme)
—patients have been denied access to diagnostic technologies that meet state, national and/or international standards and treatment options from guidelines that meet internationally validated evidence-based criteria?
The attempt by PHAC to remove congenital Lyme is not final decision. The Trudeau administration has the opportunity to correct this situation by removing PHAC leadership involved in this egregious action and reasserting Canada’s commitment to human rights by revoking PHAC’s demand to remove congenital Lyme from ICD11.
Thank you very much for your time and consideration. Please do not hesitate to contact me.
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 firstname.lastname@example.org tel. (772) 918-8322