Human Rights Violations of Relapsing Fever and Lyme Disease

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Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation

FOR IMMEDIATE RELEASE June 27, 2017
Contact author: Jenna Luché-Thayer
EMAIL: [e-mail]

Human Rights Violations of Relapsing Fever and Lyme Disease Patients Under International Investigation
A report submitted to World Health Organization resulted in a meeting between a United Nations Human Rights Council Special Rapporteur and medical professionals, scientists, human rights experts and advocates on June 7, in Geneva, Switzerland. This meeting focused on the violations against persons living with borreliosis infections, such as relapsing fever and Lyme disease.
Special Rapporteur, Dr. Dainius Pūras heard presentations on the range of these violations by representatives from an international Ad Hoc Committee dedicated to updating the World Health Organization’s (WHO) diagnostic codes for borreliosis infections and Global RBCC, a consortium responding to the Lyme disease epidemic.
Jenna Luché-Thayer, a human rights expert with 32 years of experience in 42 nations reported, “Borreliosis infections are pandemic – these include relapsing fever and Lyme borreliosis. The WHO diagnostic codes do not recognize many of the disabling conditions caused by these infections. Across the globe, medical systems use these codes to diagnose illness and determine treatments. The outdated codes result in very sick people being denied treatment —even when treatment options meet the internationally accepted gold standard for guidelines set by the Institute of Medicine (IOM). In addition to denial of care, there are attacks on medical professionals who are following these guidelines to treat chronic Lyme disease patients.”
The former Senior Advisor to the United Nations and U.S. government asked, “Can you imagine very sick children, in the process of healing through treatments from gold standard guidelines, being forcibly removed from their parents? This is happening in many countries. Can you imagine health insurance companies telling Lyme patients they will not cover such treatments but will pay for their euthanasia? According to Dutch researcher Huib Kraaijeveld, this is happening in Europe. These are shameful and predatory actions, and appear to be largely driven by outdated science, outdated codes and skewed financial motivations,” says Luché-Thayer.
The Lyme disease bacteria —spirochetes similar to syphilis— are known to evade immune response and form biofilms that are difficult to eradicate. Disputes about appropriate treatment often leave patients with no treatment options for their disabling neurological, cardiac and arthritic symptoms, as well as unrelenting fatigue and pain. Lyme carditis, an infection of the heart, can cause death and undiagnosed Lyme can lead to dementia.
Hundreds of peer reviewed publications describe serious physical conditions caused by the infection. They include Lyme nephritis, hepatitis, aortic aneurysms, persistent infection, strokes and congenital Lyme disease. The complications from Syphilis are clearly listed and detailed in the WHO codes whereas most Lyme complications are not.
Dr. Clement Meseko, Chief Research Officer and Onehealth/Ecohealth advocate at the National Veterinary Research Institute in Vom, Nigeria told the Special Rapporteur, “Many Africans depend on livestock for their livelihood and this exposes them to zoonotic borreliosis. WHO diagnostic codes for these infections need to be updated and surveillance across Africa needs to be improved. Until this happens, many people in Africa will just suffer.”
The WHO diagnostic codes for Lyme disease parallel the views held by the Infectious Diseases Society of America (IDSA). IDSA is a private medical society that promotes strict treatment limitations, regardless of Lyme patient response, and in contrast to their recommendations for other patient groups suffering from persistent infection. Some IDSA members theorize that undiagnosed mental illness, rather than persistent infection, might explain why IDSA recommended protocols fail thousands of clinically diagnosed Lyme patients.
The 2006 IDSA Lyme treatment guidelines do not meet the IOM’s internationally accepted standards for guidelines. Some of the guideline authors provide expert witness for insurers against Lyme patients; and insurers use the 2006 IDSA guidelines to deny coverage of treatments from guidelines that do meet IOM standards.
Dr. McManus is a Founder of the Tick Borne Diseases Unit at the University of Sydney and a Board Director of International Lyme and Associated Diseases Society (ILADS). ILADS is a medical society that developed the patient-centered treatment guidelines that meet the IOM’s standards.
Dr. McManus is very concerned by the lack of diagnostic tools for the thousands of Australian patients who show symptoms of tick borne diseases but never test positive for Lyme disease because they have variant forms of relapsing fever. According to McManus, poor diagnostic tools and lack of clinical familiarity leave most of these patients untreated.
In testimony to the Special Rapporteur, bioethicist Diane O’Leary, of the Kennedy Institute of Ethics at Georgetown University notes that global health organizations have clear ethical obligations. “In the context of scientific debate about the biological origins of chronic Lyme, policy makers have a duty to proactively protect the right to health.” Ethically speaking, it is not possible to justify the risk involved in continuing to obstruct access to medical care for chronic Lyme patients, stated O’Leary.
Prof. Christian Perronne is an internationally renowned Infectious and Tropical Diseases specialist with over 300 scientific publications and has played an advisory role to WHO. Prof. Perronne asked the Special Rapporteur, “How can any treatment options be withheld from these very sick patients? This goes against the Hippocratic oath of do no harm. In France, I have used prolonged treatment options longer than six weeks to successfully help thousands of patients.”
The representatives also attended the Special Rapporteur’s annual presentation to the United Nations Human Rights Council and met with official and diplomatic delegates from many nations to discuss their concerns.
According to Ad Hoc Committee and Global RBCC founder Luché-Thayer, this is just the beginning of their actions. “We will report any government agency, medical board, medical society or health insurance company that interferes with these human rights, said Luché-Thayer. “We are stakeholders with a global reach and an international presence and the Special Rapporteur has the mandate to investigate all these abuses.”
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Jenna Luché-Thayer, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes and Global RBCC, Copyright © All Rights reserved
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Many Blessings,
CrystalRiver

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For Lyme Patients, the French Tick-Borne Diseases Working Group’s Recommendations are Far Superior to US HHS Tick-Borne Diseases Working Group's Recs
Published on June 26, 2018


June 26, 2018
Jenna Luche-Thayer contact: [e-mail]

Dear Friends,
Some Updates
After our June meetings with the Special Rapporteur for Human Rights Defenders and other United Nations officials and human rights leaders in Geneva, I went on to Warsaw to give a presentation on the status of human rights of Lyme and relapsing fever borreliosis patients and their human rights defenders. The presentation as well received.
The Warsaw Conference was sponsored by the International Lyme and Associated Diseases Society (ILADS) and there were medical professionals attending from multiple European countries.
ILADS is the medical sociality that has guidelines for Lyme treatment options –including extended antimicrobial treatments– they are patient-centered and have met the internationally accepted standards developed by the US Institute of Medicine.
After Warsaw I went on to Paris, where I just presented another paper, co-authored with Professor Christian Perronne [1] and Doctor of Veterinary Medicine Clement Meseko [2]. Both Professor Perronne and Dr. Meseko are members of the Ad Hoc Committee for Health Equity in the ICD11 Borreliosis codes and have been active in supporting the human rights of Lyme and relapsing fever borreliosis patients and both have provided testimony to the Special Rapporteurs for health human rights and human rights defenders.
In Paris, our paper, Obstruction to Treatments Meeting International Standards for Lyme and Relapsing Fever Borreliosis Patients, was presented at an ICHRHS 2018: 20th International Conference on Human Rights and Human Security and was well received.
The French Tick-Borne Diseases Working Group’s Recommendations
Since arriving in Paris I have had the opportunity to speak with Professor Perronne about the National Plan for Tick-Borne Diseases that was recently and formally adopted by the government of France.
For Lyme patients, the French Tick-Borne Diseases Working Group’s recommendations are far superior to that of the US HHS Tick-Borne Diseases Working Group (US Working Group).[3]
As with the US Congressional Report being drafted by the US Tick borne Disease Working Group, it is the ‘Recommendations’ section of the French National Plan Report that will determine the actions and priorities the government might adopt.
In France, the Right of Access to Treatment Options Is Clearly Preserved
In the report is a chapter named Syndrome polymorphe persistant après une possible piqûre de tique which means ‘Persistent polymorphic syndrome possibly due to a tick bite’.
According to Perronne, this chapter is very important because it allows General Practitioners (GP) to provide one month an empiric antibiotic treatment to Lyme patients –even if the Lyme serology is negative.
The French Report also emphasizes the need to treat symptomatic pregnant women, even if they are seronegative.
Furthermore, if, at the end of the month, if the GP determines it may be necessary to prolong the treatment, the GP may then collaborate with an ‘expert centers’ to decide the duration and the combination of other antimicrobial agents.
To NOTE: Perronne is one of the most globally renowned and qualified medical experts regard tick-borne diseases. Perronne has successfully treated thousands of persons suffering from chronic Lyme and co-infections with extended antimicrobial therapies, and he has maintained records of these therapies and their effectiveness and the health status of his patients post treatment.
In exchange for this freedom to use sound clinical judgment, the French authorities have required that there is a recording of the treatment and follow up data in data bases and/or research protocols. The French authorities have also committed to providing additional monies to these expert centers so that these necessary learning tasks are financially supported.
Additionally, the expert centers must have patient representatives on their steering committees.
Management of Psychic Suffering
The US Lyme community has long criticized the impositions of a diagnosis that has been repudiated by the American Psychiatric Association –it is the ‘Medically Unexplained Symptoms’. Many in the Lyme community also criticize the use of the fraudulent Post Treatment Lyme Disease Syndrome (PTLDS)– a fabricated syndrome that has never been medically or scientifically validated.
PTLDS and MUS have been mis-used to replace the need for antimicrobial therapies with:
x patient-blaming assessments
x the denial of medical care for biological illness
x the promotion of antidepressants, anti-anxiety medications, pain management therapies that have included opioids and counselling
On this topic, the French report contrasts sharply with the long US practice of palliative care for persons –including children and young adults– with systemic Lyme infections and serious health complications from said infection, as well as coinfections.
Unlike the US Working Group’s draft recommendations, the French recommendations also clearly refute these inhumane and degrading practices of replacing medical care for biological illness with palliative care for psychosomatic illness –such practices that are recognized as human rights violations.
According to the French Report,
‘it is necessary to abstain from the false dichotomy of ‘psychosomatic OR biological/organic pathologies.
… A practitioner who does not know how to treat his [Lyme, tickborne diseases] patient cannot use therapies for psychosomatic illness instead of treatment for biological/organic illness and infection.
However, treatment for the psychological distress caused by such infections, as well as psychiatric conditions arising from neurological damage from the infections, may be used in addition to antimicrobial treatments for the infections and biological illness.
Such psychological or psychiatric therapies may only take place if there is a finding they would be useful and after the patient undergoes a thorough assessment by specialists [psychiatrists and neurologists].’ [4]
The Role of Conflicts of Interests in Recommendations
Why are the recommendations from the French report so different –and from the patient perspective, far superior in fundamental ways– from that of the US Working Group’s draft recommendations?
According to French law, conflicts of interests (COIs) must be revealed and can also disqualify experts serving on such committees of national policy and import.
However, in the US, HHS has allowed for the COIs of the US Working Group to remain shrouded in secrecy.
Apparently, the role of undisclosed COIs by those serving on the US Working Group may have a great deal to do with the ‘quality’ of their recommendations which, for the most part, maintain the status quo and appear to direct financial flows to select organizations and individuals serving the Working Group and its Subcommittees.
To NOTE: It has been revealed that both the US Working Group Chair, John Aucott and the Vice-Chair Kristen Honey are holding patents that are directly tied to their areas of oversight and responsibility in the US Working Group. Honey appears to have an unvalidated intravenous nanoparticle ‘Lyme cure treatment’ she has been promoting and Aucott has a patent for CCL19, a biomarker that he apparently claims may be used to determine if a patient should have access to antimicrobial therapies or be designated as PTLDS and only given palliative care.
Conversations with Professor Perronne
Perronne has been deeply involved in the French Working group and has fought for Lyme patients’ human rights to diagnosis and treatment options for decades.
I had the opportunity to speak with Perronne on the number of occasions about the differences between the US Working Group and the French Working Group. The picture with the article was taken in his family garden, where I enjoyed the good company of his family a few days back.
Although not intended as a response to my queries, I think he summarized the difference between the two Working Groups nicely when he told me,
‘My goal has always been to successfully treat patients and I have never tried to make money from human suffering.’ [5]
Perhaps Lyme advocates in the US can now demand the US Working Group provide the same priorities for humane patient-centered support for clinical diagnosis and treatment options as that of the French.


Faithfully,
Jenna

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[1] Christian Perronne, MD, PhD, is chief of an infectious and tropical disease department at the Raymond Poincaré University Hospital, Garches, France (Greater Paris University Hospitals, University of Versailles). He was president of the French College of Professors of infectious and tropical diseases (CMIT), of the Communicable disease commission at the French High Council for Public Health (HCSP) and of several official working groups on evidence-based recommendations. He was vice-president of the European advisory group of experts on immunization at the World Health Organization.
[2] Clement Meseko is a research fellow with the Freidrich Loeffler Institut, Federal Research Institute for Animal Health, Islet of Riems, Sudufer 10, 17489 Germany, on leave from the National Veterinary Research Institute, Vom, Nigeria where he is involved in research on zoonotic diseases.
[3] www.has-sante.fr/portail/jcms/c_2857558/fr/borreliose-de-lyme-et-autres-maladies-vectorielles-a-tiques
[4] translated from French
[5] translated from French

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From CR---in other words quit handing out psych meds when folks need anitibiotics and other forms of treatment to get well not just mask the problem and pay the criminals more money!!!