“On June 18, 2018 the World Health Organisation (WHO) issued the 11th revision of the International Classification of Diseases or ICD11 . WHO receives over 10,000 proposals for ICD11 revisions. The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes executed a comprehensive approach that successfully established new codes for life-threatening complications from Lyme. This is a major achievement for the global Lyme community because it is the first time in over 25 years that these serious complications have been officially recognised by the WHO”
The ICD10 codes have been in place since 1990, so you can understand why this is ground breaking news.
The Ad Hoc Committee for Health Equity is formed by an all voluntary professional committee to improve and address the human rights violations of Lyme and Relapsing Fever borreliosis sufferers. In particular, one of the committee members we have to thank for this recognition is a lady by the name of Jenna Luché-Thayer. Jenna has a resume as long as your arm with personal and professional achievements. Misdiagnosed for 17 years and told she had multiple sclerosis (MS), lupus, and various autoimmune diseases. Once she was finally correctly diagnosed with Lyme she quickly realised what many Lyme sufferers learn about the difficulties in obtaining access to correct diagnosis and treatment pathways. Now in remission she is a gladiator for Lyme patients across the globe.
Jenna is obviously driven and her current overwhelming desire is to overcome more than 30 years of discriminatory practices against those living with Lyme and relapsing fever borreliosis, chronic Lyme, and tickborne diseases and to build a humane and rights based patient-centred response to the borreliosis pandemic.
The press release announcing the code change does not hold back. You can read the press release in full here.
“Lyme borreliosis is a political disease and so producing a Report is only the first step in a very political process.
Every day, financial incentives and profit motives contribute to persons being denied existing diagnostic technologies that meet required standards such as those set by the European Union and by UN Member States. Persons are being denied treatment options that have met internationally validated standards and becoming disabled and dying because access to cheap generic antimicrobials are being obstructed in favour of palliative care or expensive patented biologics that manage symptoms and leave systemic infection untreated”.
Jenna emphasises personally that power and money are a factor in Lyme disease and there are multiple layers of corruption with pharmaceutical companies profiting from their disease-modifying drugs.
Born in Vietnam to American parents Jenna grew up in Asia and Africa. In 2015 she became the founder and director of the Global Response to Borreliosis and Coinfections Consortium or Global RBCC, helping institutions recognise and respond to the pandemic of borreliosis disease.
Jenna initiated the formation of the Ad Hoc Committee to update WHO’s Lyme and relapsing fever borreliosis diagnosis codes. These actions 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. Following the presentation on the global human rights violations of Lyme and relapsing fever borreliosis patients, the Special Rapporteur detailed the mandate whereby he may assist in further validating, documenting and addressing these violations. Actions are on-going.
Her analytical documents are on US Congressional record and have been submitted as expert testimony to governments in numerous countries, are under review by the US federal government with regards to the violations of civil rights and patient rights of those living with Lyme borreliosis, and initiated a forensic audit of research integrity violations.
You can also read what Lyme disease conditions you will not find in the revised ICD11, such as Post Treatment Lyme Disease Syndrome (PTLDS) and why.
You can read more about Jenna Luche-Thayer here in a previous blog.
I am sure you will agree we need champions such as Jenna Luche-Thayer in the Lyme world and you are more than welcome to go to her Facebook page, read more about her and personally thank her for her efforts. Without Jenna the cause would probably still have many believing that the earth was still flat!