Press Release by Jenna Luché-Thayer
On June 18, 2018 the World Health Organization (WHO) issued the 11th revision of the International Classification of Diseases or ICD11. WHO received over 10,000 proposals for ICD11 revisions. The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes executed a comprehensive approach that helped to successfully establish new codes for life-threatening complications from Lyme. This is a major achievement for the global Lyme community because it is the first time in over 25 years that these serious complications have been officially recognized by the WHO.
The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes (or Ad Hoc Committee) is an international, all voluntary, professional committee formed to improve the ICD codes for Lyme and Relapsing Fever borreliosis and address the human rights violations generated by inadequate codes.
What is the ICD?
The ICD is ‘a common global language’ for health professionals. ICD10 was based on approximately 14,400 codes whereas ICD11 represents more than 55,000 codes for disease diagnoses and identifying injuries and causes of death. The ICD are also 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. Thirty-one countries undertook ICD11 field testing and all Member States are to adopt ICD11 for disease reporting and morbidity and mortality statistics in 2022.
From ICD10 to ICD11
According to the Ad Hoc Committee’s Report, UPDATING ICD11 Borreliosis Diagnostic Codes, Edition One: March 29, 2017, WHO has recognized Lyme borreliosis to be a ‘disease of consequence’ since the 1990s, but the codes have remained basically unchanged.  This Report notes there are few recognized Lyme complications in the ICD10 codes and these include a rash, meningitis, polyneuropathy and arthritis due to Lyme borreliosis.
For many persons living with Lyme infection, the absence of codes for their Lyme complications means their need for care is not recognized or covered by their national health system or insurer.
The Ad Hoc Committee demonstrated how the ICD10 Lyme codes —by excluding many complications from the infection— contributed to multiple human rights violations. The Ad Hoc Committee entered comprehensive documentation and recommendations into the WHO ICD11 Beta Platform to promote recognition of:
Congenital Lyme disease, persistent infection, borrelial lymphocytoma, granuloma annulare, morphea, localized scleroderma, lichen sclerosis and atrophicus, Lyme meningitis, Lyme nephritis, Lyme hepatitis, Lyme myositis, Lyme aortic aneurysm, coronary artery aneurysm, late Lyme endocarditis, Lyme carditis, late Lyme neuritis or neuropathy, meningo-vascular borreliosis and neuroborreliosis —with cerebral infarcts, intracranial aneurysm, Lyme Parkinsonism, late Lyme meningoencephalitis or meningo-myeloencephalitis, atrophic form of Lyme meningoencephalitis with dementia and subacute presenile dementia, neuro-psychiatric manifestations, late Lyme disease of liver and other viscera, late Lyme disease of kidney and ureter, late Lyme disease of bronchus and lung and seronegative and latent Lyme disease, unspecified.
On June 5th, 2017 in Geneva, Switzerland, members of the Ad Hoc Committee met with Dainius Pūras, the United Nations (UN) Special Rapporteur on the right to health to discuss their findings and recommendations. For example, the Lyme codes are largely based on science that is rife with conflicts of interests and is globally promoted by the Infectious Diseases Society of America (IDSA). The codes also ignore many of the serious, potentially fatal complications from the disease.
After the 2017 Report UPDATING ICD11 Borreliosis Diagnostic Codes was entered into UN record, the Ad Hoc Committee met with Dr. Shekhar Saxena, the senior WHO official responsible for addressing dementia. According to the Ad Hoc Committee Director Jenna Luché-Thayer, a former Senior Advisor to the UN and US Government,
“Lyme borreliosis is a political disease and so producing a Report is only the first step in a very political process.
Every day, financial incentives and profit motives contribute to persons being denied existing diagnostic technologies that meet required standards such as those set by the European Union and by UN Member States. Persons are being denied treatment options that have met internationally validated standards and becoming disabled and dying because access to cheap generic antimicrobials are being obstructed in favor of palliative care or expensive patented biologics that manage symptoms and leave systemic infection untreated.
Following the UN meetings, we undertook media campaigns that informed the public, government and UN officials on the shortfalls of the Lyme borreliosis ICD10 codes and their related human rights violations.
We then submitted our 2018 Report, The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients: Edition One to Special Rapporteurs.  This Report also emphasizes the need to update the ICD codes and documents how the conflicts of interest driving the science contributes to human rights violations across eleven different international and regional human rights treatises. This Report was reviewed by Michel Forst, Special Rapporteur for the situation of human rights defenders and the Special Rapporteur on the right to health and entered into UN record in 2018.”
The Ad Hoc Committee’s efforts are based on global cooperation and coordination. For example, Australia, Belgium, Canada, Denmark, France, the Netherlands, Nigeria, Sweden, Switzerland, Turkey, the United Kingdom and USA were represented by Ad Hoc members in Geneva. Participants included medical doctors and scientists Barbaros Cetin, Michael Cook, Anne Fierlafijn, Mualla McManus, Clement Meseko, Judith Miklossy, Christian Perronne, Kenneth Liegner, Kenneth Sandström and Ursula Talib; advocates Theresa Denham, Angelica Johannson, Jennifer Kravis, Torben Thomsen and Jim Wilson; and human rights experts Jenna Luché-Thayer and Astrid Stuckelberger.
The ICD codes for Lyme borreliosis have been basically unchanged since the early 1990s. After twenty-five years of outdated codes, the Ad Hoc Committees’ efforts contributed to groundbreaking recognition of certain life-threatening complications from Lyme borreliosis. The new ICD11 codes now include congenital Lyme borreliosis, and dementia and central nervous system demyelination due to Lyme borreliosis.
ICD11 codes also recognize: Disseminated Lyme borreliosis, Lyme Neuroborreliosis, Lyme Carditis, Ophthalmic Lyme borreliosis, Lyme arthritis, Late cutaneous Lyme borreliosis, Other specified disseminated Lyme borreliosis, Disseminated Lyme borreliosis, unspecified, Infectious panuveitis in Lyme disease and Infectious intermediate uveitis in Lyme disease.
According to Luché-Thayer,
“The Ad Hoc Committee efforts to update the ICD11 codes were serendipitous because, unfortunately, many persons in the UN system have friends and family devastated by Lyme. However, the benefits from the new codes will only be realized when patients, advocates, medical and scientific professionals, and politicians are informed.
No parent should have to live with the sorrow and challenge of a child damaged by congenital Lyme when expectant mothers could so easily be screened for this infection. The inclusion of empiric therapies for Lyme infection among the empiric therapies for dementia, multiple sclerosis and Parkinson’s disease could save millions or even billions of dollars.
There must be concerted and organized political efforts to demand these potentially fatal complications be prevented, and their underlying infections be diagnosed and treated. The recognition by the World Health Organization of these life-threatening complications from Lyme infection cannot be dismissed. The integration of this knowledge into health policies across the globe should begin today.”
 Updating ICD11 Borreliosis Diagnostic Codes: Edition One, March 29, 2017. Authors: Jenna Luché-Thayer, Holly Ahern, Dominick DellaSala, Sherrill Franklin, Leona Gilbert, Richard Horowitz, Kenneth Liegner, Mualla McManus, Clement Meseko, Judith Miklossy, Natasha Rudenko, Astrid Stuckelberger. Contributing researchers: Joseph Beaton, John Blakely, Phyllis Freeman, Kunal Garg, Huib Kraaijeveld, Vett Lloyd, Leena Meriläinen. Cees Hamelink, Advisor. Jeff Levy, editorial support. Angelica Johannson, organizational support. ISBN-10: 1978091796, ISBN-13: 978-1978091795. CreateSpace Independent Publishing Platform October 7, 2017. To contact the principal author, email [email protected]
 The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients: Edition One, March 6, 2018. Authors: Jenna Luché-Thayer, Holly Ahern, Robert Bransfield, Joseph Burrascano, Anne Fierlafijn, Theresa Denham, Huib Kraaijeveld, Jennifer Kravis, Mualla McManus, Clement Meseko, Jack Lambert, Sin Hang Lee, Kenneth Liegner, Christian Perronne, Kenneth Sandström, Ursula Talib, Torben Thomsen, Jim Wilson. Expert Reviewers: Gabriela Barrios, Barbaros Cetin, Joseph Jemsek, Jose Lapenta, Natasha Rudenko, Armin Schwarzbach. Advisors: Cees Hamelink, Astrid Stuckelberger. ISBN-10: 1722988061, ISBN-13: 978-1722988067. CreateSpace Independent Publishing Platform July 12, 2018. To contact the principal author, email [email protected]