Corruption and Human Rights Violations Against Lyme Doctors, Scientists and Parents Now on United Nations Record

The 2018 Report ‘The Situation of the Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients’ was submitted to Special Rapporteur Michel Forst and to Special Rapporteur Dr. Dainius Puras of the United Nations in March 2018. This resulted in a meeting between United Nations Human Rights Council Special Rapporteur Forst and medical professionals, scientists, human rights experts and advocates on June 5, 2018 in Geneva, Switzerland.

FOR IMMEDIATE RELEASE – June 12, 2018. The United Nations (UN) Special Rapporteur for Human Rights Defenders, Michel Forst, heard presentations on multiple countries from the all voluntary Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes, whose global members are dedicated to addressing the borreliosis pandemic.

Ad Hoc committee members in front of the United Nations Office of the High Commissioner for Human Rights in Geneva

Jenna Luché-Thayer, Director of the Ad Hoc Committee, gave an overview from the 2018 Report ‘The Situation of the Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients’ that was followed by representatives sharing cases from their countries. She started by contrasting scenarios where the public recognition of human rights issues differs. For example, most people recognize the devotion to human rights of the journalist who goes into a war zone to find and share the truth of innocent people brutalized by war crimes and the risks taken by the persons who organize to free children from international sex trafficking. These defenders of human rights can be easily identified because they are working to address situations we all can recognize as horrific.
In contrast, the healthcare systems across the globe are largely recognized as flawed but not intentionally horrendous. However, increasing numbers of scholarly publications have documented how these healthcare systems have become quietly corrupted and this has led to a global healthcare situation wherein “criminal activities have become normalized”, according to Dr. Dainius Pūras, the UN Special Rapporteur on the right to health.
The defenders of Lyme and relapsing fever borreliosis patients include medical professionals, doctors, scientists, patients and advocates fighting for the health human rights of this patient group. The Report shows how many of these defenders are routinely defamed, their freedoms to associate and speak restricted, and their livelihoods are threatened. It also shows how parental rights of parents of severely ill children are routinely violated by State Actors.
According to the October 24, 2017 presentation to the UN General Assembly by Dainius Pūras, “In many countries, health is among the most corrupt sectors; this has significant implications for equality and non-discrimination.”
This second Report by the Ad Hoc Committee supports his findings. It details how financial motivations shared among a faction in a medical society, their associates, State Actors and insurers have contributed to a global situation whereby doctors, scientists and parents are attacked because they defend these patients’ rights to health, bodily integrity and life. It is not uncommon for these defenders’ reputations, livelihoods and finances to be ruined — doctors lose their licenses, scientists lose access to research monies and parental rights are violated when ill children under treatment that meet internationally accepted standards are seized from their homes.
Jenna Luché-Thayer, a human rights expert with 33 years of experience in 42 nations reported how the case definition of Lyme borreliosis (LB) was changed by colluding US State Actors and certain members of the Infectious Disease Society of America (IDSA)’ and that the timing of these changes concurred with the launch of a failed Lyme vaccine, promotion of an unreliable, yet profitable diagnostic test system and the unwillingness of US insurers to cover the chronic or persistent form of the disease as they moved into the ‘managed care’ model.
She noted how the revised LB case definition removed most references to the debilitating symptoms, disabling and potentially fatal complications, persistence and severity of the disease and the unreliable diagnostic technologies. She also noted that contrary to the case definition, over 200 patents — held by IDSA members, State Actors and associates — reflect these serious and life-threatening complications, persistence of the disease and how the infection is often missed by the unreliable serology diagnostic technology.
Luché-Thayer detailed how the current situation of these human rights defenders and this patient group shows violations of articles found in eleven international and/or regional human rights treatises and conventions.
She stated that it appears the corruption started in the early 1990s is reflected in the 2006 IDSA Guidelines that have been promoted globally and also appears to have shaped the World Health Organization’s (WHO) International Classification of Diseases (ICD) codes for the disease.
She stated the Report shows how this corruption appears to be globally organized across institutions such as the Association of Medical Microbiology and Infectious Diseases of Canada, European Union Concerted Action on Lyme Borreliosis (currently defunct) European Society of Clinical Microbiology and Infectious Diseases’ Study Group for Lyme Borreliosis (ESGBOR) and State Actors and is driving unnecessary suffering, death and bankruptcy among this patient group.
The former Senior Advisor to the United Nations and U.S. government asked, “There is universal agreement that prisoners have a right to medical care. Precisely what is the difference between a ‘prisoner of war’ and ‘an eight-year-old boy’ being denied medically necessary antimicrobial care? Seizing the business of a political opposition party leader is prohibited. Precisely what is the difference between ‘seizing the businesses from a political opposition party leader’ and a medical board with members representing one medical society ‘closing down the business of a medical doctor that belongs to a competing medical society’?”
Jim Wilson, President of CanLyme, and Jennifer Kravis, co-founder of LymeHope, lawyer and mother of a daughter with tick borne diseases, testified about the situation in Canada. Only two percent of all Canadian doctors have ever been under investigation by their respective provincial Colleges of Physicians and Surgeons whereas nearly 100 percent of the doctors who diagnose and treat LB clinically have either been harassed by their respective provincial Colleges of Physicians and Surgeons to the point they gave up their medical licenses, or were forced to stop seeing Lyme patients.
Dr. Kenneth Liegner (USA) spoke about how he used to cooperate with the US Centers for Disease Control and Prevention and detected the Lyme infection in the spinal fluid of his patient, Vicki Logan, despite prior antibiotic treatment. Early on, her private health insurer covered extended intravenous antibiotic treatment which improved her condition. Later, when in a nursing home and under Medicaid, her intravenous antibiotic treatment was suspended. While Liegner sought mechanisms for Medicaid reimbursement, Vicki experienced grand mal seizures and was transferred to a local hospital where Liegner did not have privileges. There she was found to have low blood pressure, her condition was not investigated and her family was persuaded to support a ‘do not resuscitate’ order. She subsequently died. An autopsy revealed ongoing neurologic Lyme disease and an acute heart attack that was neither diagnosed nor treated. Her case exemplifies the discrimination persons with Lyme experience.
Special Rapporteur Forst also heard of how many of Liegner’s colleagues were bullied into silence or submission; many of them losing their licenses or going bankrupt because of legal costs to fight the allegations made by insurance companies and supported by certain IDSA members. For example, defender Dr. Joseph Burrascano anticipated his own attacks in his 1993 Senate testimony on the apparent corruption and the unethical obstruction to diagnostics and care experienced by this patient group. Liegner also made a point of saying ‘it was not patients who made these allegations’.
French Professor Christian Perronne is an internationally renowned Infectious and Tropical Diseases specialist with over 300 scientific publications and has played an advisory role to WHO. Perronne told the Special Rapporteur how, following his 2016 presentation on LB at France’s Academy National of Medicine, he was publicly called a “terrorist” by former the President of the Academy, Professor Marc Gentilini.
The Ad Hoc Committee recognizes there are other patient groups and defenders’ experiencing similar human rights violations, and with the increasing corruption found in the health sector globally, these violations are trending across more groups. Emeritus Professor Malcolm Hooper (UK) testified how the defenders of an estimated 15-30 million people with Myalgic Encephalomyelitis diagnosis (also known as ‘chronic fatigue syndrome’) are similarly attacked and discredited. He shared how the guidelines for ME treatment also appear to be riddled with conflicts of interests, fraudulent science and harm patients’ health and obstruct their access to disability payments.
While in Geneva, Dutch social scientist and human rights researcher Huib Kraaijeveld and other Ad Hoc Committee members discussed these matters with officials from the Dutch Ministry of Health and Embassy. Ad Hoc members including Dr. Anne Fierlafijn (Belgium), retired senior engineer Michael Cook (UK), biologist Dr. Barbaros Çetin (Turkey), media expert Torben Thomsen (Denmark), human rights expert Dr. Astrid Stuckelberger (Switzerland), psychiatrist Dr. Ursula Talib (Switzerland), scientist Dr. Mualla McManus (Australia) and advocate Theresa Denham (USA) also met with an array of internationally recognized human rights leaders and advisors, documentary film makers, and a number of persons in the Swiss medical system and UN personnel with personal experience of Lyme.
To note, the WHO’s ICD codes for Lyme borreliosis are still inadequate and outdated. When Ad Hoc member Stuckelberger contacted WHO to set a meeting to discuss the LB codes, she received written communications stating that ‘WHO has no person for Lyme borreliosis’– one of the fastest growing vector borne diseases in the world and officially ranked by the European Union as one of the top public health threats in Europe. These inadequate codes may be why in West Africa many persons misdiagnosed with debilitating drug resistant malaria were eventually found to be suffering from borreliosis infection.
According to Ad Hoc Committee founder Luché-Thayer, “This global all-voluntary organization will continue to document the human rights violations and corruption surrounding this borreliosis pandemic; we are committed to addressing these self-serving, financially-motivated threats to global health.”

  1. Maureen Landry on said:

    Deep gratitude to Jenna Luche-Thayer for her courageous work to open a pathway for treatment for all those suffering with tick borne diseases in Canada. And to Jim and others who were part of the Geneva initiative. I am looking forward to next steps in Canada.

  2. Marie on said:

    Thank you for sharing this report. Dr. Kenneth Liegner is the doctor I was referred to 17 years ago after 15 years of CFS diagnosis. He diagnosed me and for awhile I had a very co-operative Doctor who cared for me and followed his guidance. Sadly, the doctors I see now have little knowledge of Lyme disease.

  3. Jane on said:

    Our Canadian advocates – Jim Wilson and Jennifer Kravis – attended this very important meeting on our behalf, and documented the abuses and health human rights violations that Lyme patients suffer on a daily basis. It is with much gratitude that I thank them for their excellent representation, their tirelessness in this endeavour, and for being the epitome of integrity and justice. The international Ad Hoc Committee have now been recognised, and their work documented, at the United Nations. We know that the wheels of justice and of change happen slowly, but they are turning, and building momentum. This is good news. Thanks to you all.

  4. Rob Murray on said:

    Thank you Jim and to all for the hard work put into this effort by everyone involved especially to Jenna Luche’-Thayer for the clarity of her arguments.

  5. Evelyn Seeton on said:

    Dr. Murakami (sp) of BC is one of the doctors persecuted for treating Lyme. Shameful. My husband did meet with him but had Lyme for too many years for any effective treatment to help him.

  6. cathie smith on said:

    thanks so much for being so willing to fight for change I only wish there were more of you in this world!!!

  7. Larry Herr on said:

    Lyme patients in Canada and all around the world are very much indebted to people like Jim Wilson of CanLyme, and Ad Hoc Committee founder, Jenna Luche-Thayer, for their tireless efforts to end years of medical and human rights abuses by certain members of the Infectious Diseases Society of America, and the Centers for Disease Control and Prevention. Thank you Mr. Wilson and Ms. Luche-Thayer!

  8. Pingback: To Hell and Back: denial of access to health care in Canada. Another disgraceful failure of the Public Health Agency of Canada, now a Human Rights issue | CanLyme – Canadian Lyme Disease Foundation

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