Dr Philippa Hetzel was invited to speak at the 22nd Biennial International Conference on Human Retrovirology: HTLV and Related Viruses (3–6 June 2026, Philadelphia), where she presented on Standardising molecular diagnosis of HTLV infections and the work of IRVA’s International HTLV Testing Working Group which she Co-Chairs with Dr Mirna Biglione from Argentina.

The Conference included strong voices from People living with HTLV-1 who emphasised how the burden of HTLV-1 disease is primarily impacting vulnerable disadvantaged people who face significant health inequity because it is usually undiagnosed, and when people do present, the disease burden is high but it is often still not diagnosed correctly because there is such low awareness of the manifestations of HTLV-1 amongst health care professionals. It is a socially determined disease globally and stigma can only be addressed by public education to achieve greater awareness and to increase testing. Reticence amongst some health professionals to test is also wide-spread and it’s the voices from families living with HTLV-1 who are the strongest for change.

A key improvement towards standardising molecular testing is the development of the world’s first Certified Reference Materials for HTLV-1 and HTLV-2 which NRL is leading in collaboration with the National Measurement Institute with funding from the Australian Centre for Disease Control.

The Reference Materials will become available later this year and will be evaluated by 14 laboratories across eight countries. Once validated and registered as an International Standard, it will enable laboratories worldwide to calibrate their in-house molecular HTLV tests – a significant milestone given that there are no commercial standards or molecular assays for HTLV available globally.