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On Lyme Foundation, Netherlands
Title: Health equity in ICD11 borreliosis codes
Biography

Huib Kraaijeveld (MA) is trained as a social psychologist and educator. Since 2010 he has been researching and documenting the mistreatment of LB patients and its devastating social consequences to countless people and their children. He shares the stories and knowledge of both sufferers, solvers, investigators and influencers on the website of the On Lyme Foundation, as public education and input for both political actions and legal cases. He has authored the book ‘Shifting the Lyme Paradigm’ and is also a founding member of the ‘Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes', an all-voluntary global multidisciplinary consortium of highly skilled professionals representing nations from five continents. Their efforts are already bringing more-informed political attention and pressure to correct the response to the Lyme pandemic.

Abstract

Borreliosis infections are pandemic-these include relapsing fever and Lyme borreliosis LB. The WHO has recognized Lyme borreliosis as a multi-region ‘disease of consequence’ for decades. In August 2017, the European Centre for Disease Prevention and Control noted that LB is among the 30 most threatening diseases for public health (Decision 1082/2013/European Union). According to experts across key veterinary and medical institutions in West Africa, many in Africa depend on livestock for their livelihood and this exposes them to zoonotic borreliosis. Research has shown that many cases of what was assumed to be drug resistant malaria was borreliosis infection. In Australia, the lack of diagnostic tools for forms of relapsing fever borreliosis leaves thousands of patients without confirmation or access to medical care. Clinicians and researchers across the US, Canada, Eastern, Western and Northern Europe, the Asia Pacific and Africa have stated that WHO diagnostic codes for these infections need to be updated and surveillance needs to be improved. Until this happens, estimated millions of people will just suffer. Studies indicates costs to be in the millions for employers and billions for certain national economies. Based on the Centers for Disease Control and Prevention’s conservative estimate of annual LB infection in the USA, their 2017 article on persistent infection and their 2006 study on the cost of Lyme disease, roughly 380,000 LB infections cost more the US more than 4.09 billion dollars annually. 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 come from clinical practice guidelines that meet internationally accepted standards for guidelines. In addition to denial of care, there are attacks on medical professionals who are following these guidelines to treat chronic Lyme disease patients. The Lyme and relapsing fever borreliosis bacteria-spirochetes similar to syphilis-are known to evade immune response and form biofilms that are difficult to eradicate. Hundreds of peer reviewed publications describe serious physical conditions caused by the Lyme borreliosis infection. They include Lyme nephritis, hepatitis, aortic aneurysms, persistent infection, strokes, dementia, heart failure and congenital Lyme disease. The complications from syphilis are clearly listed and detailed in the WHO codes whereas most Lyme complications are not. From an ethical perspective, there is unjustifiable medical risk involved in continuing to obstruct access to medical care for patients that meet clinical diagnosis and those suffering from chronic LB and relapsing fever borreliosis. Medicine has many cases of scientific debate, for example, how best to treat certain cancers or autism. In all these cases, policy makers have a duty to proactively protect the right to health. In June 2017, an international team of scientists, medical professionals, human rights experts and patient advocates testified before the United Nations Special Rapporteur responsible for health and human rights regarding the human right violations experienced by Lyme and relapsing fever borreliosis patients.

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