ADDRESSING GLOBAL OBSTACLES TO CARE OF BORRELIOSIS PATIENTS (LYME AND RELAPSING FEVER)

Jenna Luché-Thayer: Addressing Systemic Obstacles in the Borreliosis Pandemic 

Jenna Luché-Thayer gave this presentation at the International Lyme and Associated Diseases Society (ILADS) Annual Scientific Conference in Boston, November 10, 2017. Jenna is the founder of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. In this presentation, Jenna explains how the Ad Committee is trying to address global obstacles to care experienced by Lyme and relapsing fever borreliosis patients and describes how you can use this information to address these human rights abuses. The Ad Hoc Committee was formed in 2016 to:  update the World Health Organization’s (WHO) International Classification of Disease (ICD) codes for Lyme borreliosis (LB)  demonstrate how the outdated codes are contributing to human rights violations The Ad Hoc Committee members:  represent Asia Pacific region, Africa, North and South America and Eastern, Western and Northern Europe  represent scientific, medical and human rights experts, clinicians and professors across well respected academic and research centers and as advisors to governments and WHO  have worked on borreliosis for two and three decades  have many hundreds of peer-reviewed publications and studies The Ad Hoc Committee’s report, Updating ICD11 Borreliosis Diagnostic Codes was accepted by WHO prior to the March 30, 2017 deadline for code revisions. Also, as per WHO’s required rules and process for ICD revisions, each recommendation with supporting references was entered onto the WHO ICD Beta Platform. The Updating ICD11 Borreliosis Diagnostic Codes report was also submitted to Dr. Dainius Pūras, the United Nations 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 was then invited to meet with Dr. Pūras in his official capacity on June 7, 2017 —an event that does not take place unless there exists a legitimate cause for concern about violations of the right to health and other health-related human rights. Dr. Pūras 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. Dr. Pūras also told the Ad Hoc Committee how he could support this effort within the framework of his mandate. The report is now a published document with an assigned ISBN number. Therefore, it may be cited and quoted as a reference for many purposes including medical, scientific, legal, human rights, public health and economic analysis. For more details - see https://www.linkedin.com/pulse/addressing-systemic-obstacles-borreliosis-pandemic-jenna-luche-thayer/ 

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Addressing Systemic Obstacles in the Borreliosis Pandemic

November 15, 2017 —contact jennaluche@gmail.com

On November 10, 2017 global human rights expert Jenna Luché-Thayer gave a comprehensive presentation to over 700 medical and scientific professionals attending the International Lyme and Associated Diseases Society (ILADS) 18th Annual Scientific Conference in Boston [1].

Luché-Thayer is the founder of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. In this videoed presentation, Jenna explains how the Ad Hoc Committee is trying to address human rights abuses such as the obstruction to healthcare experienced by Lyme and relapsing fever borreliosis patients across the globe.

Luché-Thayer provides compelling evidence as to how this disease has been politicized by the World Health Organization (WHO) and other key institutions responsible for public health and medical care. The entire presentation —Addressing Systemic Obstacles in the Borreliosis Pandemic— is for available for free viewing on YouTube.

The presentation also explains how the Ad Hoc Committee’s report, Updating ICD11 Borreliosis Diagnostic Codes: Edition One [2], may be used by those concerned with the injustices associated with this pandemic.

The report was accepted by WHO prior to the March 30, 2017 revisions deadline for international classification of diseases (ICD) codes. Also, as per WHO’s required rules and process for ICD revisions, each recommendation with supporting references was entered onto the WHO ICD Beta Platform. 

The Updating ICD11 Borreliosis Diagnostic Codes report was also submitted to Dr. Dainius Pūras, the United Nations 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 was then invited to meet with Dr. Pūras in his official capacity on June 7, 2017 —an event that does not take place unless there exists a legitimate cause for concern about violations of the right to health and other health-related human rights. Dr. Pūras 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. Dr. Pūras also told the Ad Hoc Committee how he could support this effort within the framework of his mandate.

The report is now a published document with an assigned ISBN number. It may be cited and quoted as a reference for many purposes including medical, scientific, legal, human rights, public health and economic [3]. The following key information can be cited from the report:

The record now shows 100s of peer-reviewed studies —written by nationally and internationally recognized scientists and medical researchers from across the globe— describing:

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, Meningovascular and Neuroborreliosis – with cerebral infarcts, Intracranial aneurysm, Lyme Parkinsonism, Late Lyme meningoencephalitis or meningomyelo-encephalitis, Atrophic form of Lyme meningoencephalitis with dementia and subacute presenile dementia, Neuropsychiatric 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.

Furthermore, no medical condition was entered into record if it had less than three supporting peer-reviewed publications. The Committee members then gave verbal and additional written testimony as to how medical practitioners on the Committee had collectively and effectively treated tens of thousands of patients with persistent and complicated LB with clinical practice guidelines that have meet internationally accepted standards. 

These materials firmly establish the significant possibility that patients with persistent Lyme require biological medical care —not as a matter of opinion, but as a matter of scientific fact. Furthermore, treatment options for persistent Lyme —including extended and combination antimicrobial therapies— that have met internationally recognized standards for clinical guidelines are available, as are accredited educational programs on how to implement such therapies.

The record also shows many different types of health human rights violations. These include how obstruction of access to treatment options from clinical practice guidelines that meet internationally accepted standards for guidelines violates the Availability, Accessibility, Acceptability, Quality (AAAQ) of Health Human Rights imperatives for "non-discriminatory" practices and medical ethics. The record also shows how LB patients who have received clinical diagnosis are routinely denied care should laboratory tests fail to confirm their clinical diagnosis.  

Many practices resulting from these codes are recognized as human rights violations. Furthermore, the codes are linked to policies recommending practices that:

—for many patients, prevent proper diagnosis and obstruct access to treatment options that meet internationally accepted standards

—promotes discrimination based on illness manifestations 

—misapplies somatic diagnosis [4] to deny medical care 

—obstructs treatments based on illness manifestations  

—promotes discrimination based on financial status 

—supports attacks on human rights defenders —including medical practitioners, scientists and researchers who act on behalf of this vulnerable patient group

—restricts information regarding treatment options that meet internationally accepted standards

—routinely excludes key stakeholders —such as medical practitioners, researchers, patients and caretakers who are concerned with persistent and complicated cases of LB —from decision-making venues … making these stakeholders invisible to policy makers, economists and other practitioners and researchers

—permit sick children under treatments that meet internationally accepted standards be forcibly removed from their parents —and there are many cases where such parents are falsely accused of poisoning their children or Munchausen by Proxy  

—support alarming cases where euthanasia is encouraged over treatments that meet internationally accepted standards

To summarize, the science and medical knowledge regarding persistent and complicated LB —from hundreds of peer reviewed publications written by nationally and internationally recognized experts— has been routinely ignored or suppressed. Furthermore, the human rights defenders of this patient group are routinely threatened and punished for fulfilling their Hippocratic oath to this marginalized patient community. Despite this institutionalized obstruction to care, tens of thousands of patients with persistent and complicated Lyme and relapsing fever borreliosis have regained quality of life, manage their illness and have become productive and contributing members of society by overcoming these obstructions and gaining access to extended treatments that meet internationally accepted standards for clinical guidelines.

The widespread discrimination experienced by Lyme and relapsing fever patients has been systemic and institutionalized across ICD codes, national health policies and medical and insurance systems. Altogether, these factors have led to gross human rights violations that are on record with the United Nations Human Rights Council’s Special Rapporteur for the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.

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[1] The full presentation is available for viewing on youtube: https://www.youtube.com/watch?v=LLIO0r1mCcE (titled: Jenna Luché-Thayer: Addressing Systemic Obstacles in the Borreliosis Pandemic)

[2] Updating ICD11 Borreliosis Diagnostic Codes Authors: Jenna Luche-Thayer,‎ Holly Ahern,‎ Dominick DellaSala, Sherrill Franklin,‎ Leona Gilbert,‎ Richard Horowitz,‎ Kenneth Liegner, Clement Meseko, Mualla McManus, Judith Miklossy,‎ Natasha Rudenko,‎ Astrid Stuckelberger‎. Contributing researchers: Joseph Beaton,‎ John Blakely,‎ Phyllis Freeman,‎ Kunal Garg,‎ Huib Kraaijeveld,‎ Vett Lloyd,‎ Leena Merilainen. Cees Hamelink - Senior Advisor, Jeff Levy - editorial support, Angelica Johannson - organizational support. Publisher: CreateSpace Independent Publishing Platform (October 7, 2017). ISBN-10: 1978091796 and ISBN-13: 978-1978091795

[3] The report is now available on Amazon and all proceeds support the voluntary work by the Committee.

[4]Medically Unexplained Symptoms or MUS has been repudiated by the American Psychiatric Association (APA) and removed from the Diagnostic and Statistical Manual of Mental Disorders (DSM).