Dear IRVA Members,
I hope this message finds you well. I am sure you recall this paragraph in our letter: Time to eradicate HTLV-1: an open letter to WHO
“…..Despite its distinct etiology and distinctive pattern there is no International Classification of Disease Code (ICD code) for HAM/TSP, an extraordinary state of affairs for a disease described for the first time by Eric Cruickshank in 1956 (38), linked to HTLV-1 in 1985 and for which WHO has had diagnostic criteria since 1989 (39). Patients living with HTLV-1 and/or suffering from HAM/TSP find this omission incredulous. We truly hope that you can help us rectify this serious oversight in order to reduce the under-diagnosis and under-reporting of this disease. …”
I have good news: in the April 2019 version of ICD-11, HAM/TSP has now its own distinct code: 8A45.00
“Human T-cell lymphotropic virus (HTLV) is a retrovirus and causes immune mediated diseases of the nervous system. Human T-cell lymphotropic virus type 1 (HTLV-1) and Human T-cell lymphotropic virus type 2 (HTLV-2) are closely related retroviruses with similar biological properties and common modes of transport.”
Please see screenshot attached of ICD-11 (in the 2016 release there was no mention of HAM/TSP in ICD-10).
This is marvellous news! Finally patients suffering from HAM/TSP receive the recognition they deserve, clinicians looking after our patients can code their workload systematically to ask for resources and the international surveillance of HAM/TSP can be conducted in a systematic and constructive way.
Now we need to make sure we code everybody we look after correctly by: ATL, HAM/TSP, HTLV carrier and contact ( you can search for these codes here https://icd.who.int/browse11/l-m/en#/https://id.who.int/icd/entity/1043229589).
This way we will be able to pool and compare surveillance data internationally. One of our next steps will be to achieve the same recognition for other HTLV-1 associated inflammatory conditions.
I am grateful to you all for your support and efforts to get this project off the ground.
This is a huge milestone towards our goal to eradicate HTLV-1.
Fabiola Martin, MD, MDRes, FAChSHM, FRCP, FHEA