[CanLyme Note: CanLyme was approached by Jenna Luché-Thayer early this year after her finding out that the World Health Organization (WHO) had held a meeting in November 2016 regarding updating the WHO International Classification of Diseases codes (ICD codes) relative to tick borne diseases. WHO is mandated to work with stakeholders yet no patient groups were asked to attend the Tokyo meeting. As a result the recommendations for coding Lyme disease completely ignore the many disabling symptoms of chronic Lyme disease. These codes are to be used by all countries to gather data on disease. With no proper codes no data is gathered on chronic Lyme disease… it simply does not exist.
We found out that we had until March 31st, 2017 to submit recommendations so we quickly assembled a panel of medical and science experts from several countries to formulate a submission. Canada was well represented by physicians and scientists on the panel.
After several teleconferences and the herculean efforts of the panel, and Dr. Vett Lloyd, her students at Mount Allison University in New Brunswick, Canada, and Dr. Leona Gilbert, her students at University of Jyvaskyla in Finland, a 103 page report was constructed and presented to the WHO. It is now in the hands of WHO and it is up to them as to whether they will acknowledge the many signs and symptoms of chronic Lyme disease, contrary to their position to date which has been to ignore a large and growing body of seriously disabled people and to ignore volumes of peer reviewed evidence.
Jenna, through her contacts was able to secure a meeting with the human rights rapporteur at the United Nations. An expert delegation was put together with many countries represented including Canada by Dr. Ben Boucher. ]
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.
“Every patient has a right to health in the context of scientific uncertainty. Lyme disease is a biological condition that requires care,” says Bioethicist Diane O’Leary, of the Kennedy Institute of Ethics at Georgetown University. “No health organization can adopt or support any Lyme disease policy that obstructs patient access to biological medical care due to the unnecessary harm that may result from denying care. It can’t be ethically justified.”
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.”