‘People are scared’: the fight against a deadly virus no one has heard of

Guardian Australia, Tue 24 Apr 2018 

An Aboriginal woman – we’ll call her B – is sitting in a dry creek bed outside her community and telling the world “this is a very bad disease. But we have to talk in a way not to shame people. Not telling them straight out. Telling them gently and quietly.”

B is talking about a sickness that has killed her family member and is a potential tragedy facing Aboriginal communities in central Australia, who have the world’s highest rates of a fatal, human immune virus for which there is no current cure, no treatment and no coordinated public health response.

Human T-lymphotropic virus type 1 (HTLV-1) is transmitted through sexual contact, blood transfusion and from mother to child by breastfeeding. It can cause a rapidly fatal form of leukaemia. Some people die within weeks of diagnosis. HTLV-1 also causes inflammation of the spinal cord leading to paralysis, severe lung disease known as bronchiectasis and other inflammatory disease.

In five communities around Alice Springs, more than 45% of adults tested have the virus, a rate thousands of times higher than for non-Indigenous Australians.