ILADS Member Engages the WHO to Include Lyme Disease in Revision of Health Code

The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes (or Ad Hoc Committee) is an international, all voluntary, professional committee formed to improve the ICD codes for Lyme and Relapsing Fever borreliosis and address the human rights violations generated by inadequate codes.

In 2017, members of the Ad Hoc Committee met with Dainius Pūras, the United Nations (UN) Special Rapporteur on the right to health and Dr. Shekhar Saxena, the senior WHO official responsible for addressing dementia to discuss their findings from the Report, UPDATING ICD11 Borreliosis Diagnostic Codes, Edition One (March 29, 2017) and entered many potentially fatal complications from Lyme borreliosis into the WHO ICD11 Beta Platform. Many persons in the UN system have friends and family devastated by this disease.

The ICD11 codes now recognize: 1C1G.2 Congenital Lyme borreliosis; 6D85.Y Dementia due to Lyme Disease (Dementia due to other specified diseases classified elsewhere); 8A45.0Y Central Nervous System demyelination due to Lyme borreliosis (Other Specified white matter disorders due to infections). There is additional flexibility under the ‘Coding Note’ for Lyme borreliosis to ‘use additional code if desired, to identify any associated condition or sequelae’ and use the ‘extension code ‘Cause of late effect’ (in addition to both codes) to show the relationship between the causative condition and the resulting sequelae’.

ILADS members who contributed to ‘ICD codes report’ are Jenna Luché-Thayer, Leona Gilbert, Richard Horowitz, Kenneth Liegner and Mualla McManus.

The Ad Hoc Committee’s 2018 report, ‘The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients: Edition One’also emphasized the need to change these ICD codes. ILADS members Jenna Luché-Thayer, Robert Bransfield, Joseph Burrascano, Mualla McManus, Jack Lambert, Kenneth Liegner, Christian Perronne, Ursula Talib  and Armin Schwarzbach contributed to the ‘defenders report’ that was entered into UN record in 2018 by Michel Forst Special Rapporteur for the situation of human rights defenders and reviewed by the Special Rapporteur on the right to health.