Indigenous Australians in remote communities are dying from a little-known HIV-related virus and drastic action from the federal government is needed, an infectious diseases expert warns.

The human T cell Lymphotropic Virus (HTLV-1) attacks the immune system by infecting a type of white blood cell called a T-cell and can cause a type of leukaemia or inflammatory disease.

Symptoms can include inflammation of the eyes and lungs, severe arthritis and dermatitis.

The Australasian HIV&Aids and Sexual Health Conference in Canberra was told on Monday that indigenous communities in central Australia have some of the highest rates of HTLV-1 in the world but most people with the infection don't event know they have it.

In some remote communities more than half the adult population have the virus, said Dr Lloyd Einsiedel at the Baker Heart and Diabetes Institute

"We urgently need to better understand the effect of this virus in indigenous communities and this must be done with indigenous guidance and leadership," Dr Einsiedel said.

The expert is calling for HTLV-1 to be added to the list of diseases that are preventable with safe sex and for a health literacy program to increase awareness of the virus.