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The paper 'Updating ICD11 Borreliosis Diagnostic Codes' analyzes how, on a global scale, existing ICD10 diagnostic codes are preventing proper diagnosis and treatment of borrelioses including Lyme borreliosis and relapsing fever borreliosis. Across the globe, clinicians, scientists, researchers and patients examined and compiled references from peer-reviewed scientific literature to demonstrate the wide-ranging manifestations experienced by patients afflicted with these diseases.

Caused by the bite of ticks, in the United States alone there are an estimated 380,000 new annual Lyme borreliosis cases - more than six times the number of new HIV/AIDS cases and even more prevelant than new cases of breast cancer. Nevertheless, the few ICD10 diagnostic codes related to the borreliosis illness known Lyme disease cover a fraction of the conditions Lyme disease may cause. 

Without accurate and appropriate diagnostic codes, physicians are impeded in their ability to properly care for their patients, leaving those patients invisible and marginalized within the medical system and to those guiding public policy. This results in great personal hardship, pain, disability and expense. This unnecessarily burdens health care systems, governments, families and society as a whole. With accurate diagnostic codes in place, robust data can guide medical and public health research, health policy, track mortality and save health care dollars.

WHO recognizes Lyme disease to be a ‘disease of consequence’. WHO has met and consulted with other patient groups, scientists and medical professionals and non-governmental stakeholders from other ‘diseases of consequence’ during the ICD11 revision process.

We therefore recommend WHO engage with the global borreliosis stakeholder community who recognize the wide-ranging manifestations experienced by borreliosis patients. We also advise WHO use the peer-reviewed scientific literature that recognizes the wide-ranging manifestations experienced by patients as the basis for updating and modernizing the ICD11 diagnostic codes for Lyme borrelioses and relapsing fever borrelioses. 

Contributing researcher Huib Kraaijeveld wrote a blogpost on his website about the meaning of this project, written in a language that everyone will be able to understand. It is called 'the difference between hell and hello'