Jenna Luché-Thayer gave this presentation at the International Lyme and Associated Diseases Society (ILADS) Annual Scientific Conference in Boston, November 10, 2017. Jenna is the founder of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes.
In this presentation, Jenna explains how the Ad Committee is trying to address global obstacles to care experienced by Lyme and relapsing fever borreliosis patients and describes how you can use this information to address these human rights abuses.
The Ad Hoc Committee was formed in 2016 to:
update the World Health Organization’s (WHO) International Classification of Disease (ICD) codes for Lyme borreliosis (LB)
demonstrate how the outdated codes are contributing to human rights violations
The Ad Hoc Committee members:
represent Asia Pacific region, Africa, North and South America and Eastern, Western and Northern Europe
represent scientific, medical and human rights experts, clinicians and professors across well respected academic and research centers and as advisors to governments and WHO
have worked on borreliosis for two and three decades
have many hundreds of peer-reviewed publications and studies
The Ad Hoc Committee’s report, Updating ICD11 Borreliosis Diagnostic Codes was accepted by WHO prior to the March 30, 2017 deadline for code revisions. Also, as per WHO’s required rules and process for ICD revisions, each recommendation with supporting references was entered onto the WHO ICD Beta Platform.
The Updating ICD11 Borreliosis Diagnostic Codes report was also submitted to Dr. Dainius Pūras, the United Nations Human Rights Council’s Special Rapporteur for the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.
The Ad Hoc Committee was then invited to meet with Dr. Pūras in his official capacity on June 7, 2017 —an event that does not take place unless there exists a legitimate cause for concern about violations of the right to health and other health-related human rights.
Dr. Pūras accepted all the Committee’s documentation including reports, books and videos, PowerPoint and verbal testimony, his Senior Human Rights Officer and Team Leader put them into record. Dr. Pūras also told the Ad Hoc Committee how he could support this effort within the framework of his mandate.
The report is now a published document with an assigned ISBN number. Therefore, it may be cited and quoted as a reference for many purposes including medical, scientific, legal, human rights, public health and economic analysis. For more details - see https://www.linkedin.com/pulse/addressing-systemic-obstacles-borreliosis-pandemic-jenna-luche-thayer/
Jenna Luche-Thayer on Facebook: https://www.facebook.com/profile.php?id=100011527417750&hc_ref=ARRgylCSHNyjng17y1mXC56hT9aCoFvzEFMkYTCDe3V226mFvwB-x6Km0dhVYiIASK0 and on LinkedIn: https://www.linkedin.com/in/jenna-luche-thayer-b75b902b/
Here is the link to First Officially Recognized Report on Violations of Lyme Patients' Human Rights is Released https://www.linkedin.com/pulse/first-officially-recognized-report-violations-lyme-jenna-luche-thayer/
See also: Monte Skall, executive director of NatCapLyme, interviews Jenna Luche-Thayer - ILADS 12-11-2017 http://www.dailymotion.com/video/x691rok
