The time for action on Human T-Lymphotrophic Virus has arrived: An open letter to WHO

Australasian Society for HIV Viral Hepatitis and Sexual Health Medicine (ASHM), 10 May 2018

ASHM has joined the call by leading Human T-Lymphotrophic Virus 1 (HTLV-1) researchers, clinicians and patients to take action on HTLV-1 by signing an open letter to the WHO, published in an abbreviated form in The Lancet. The letter calls on the WHO to support the promotion of proven, effective transmission prevention strategies for HTLV-1, in much the same way it already does for HIV, HBV and HCV.

ASHM established an 2016, to bring together researches, clinicians and community representatives at an annual round table to raise awareness of HTLV-1 and share the latest information. Up to 40% of the  HTLV-1 working group ipopulation of some Central Australian communities are positive for HTLV-1, which can cause cancer, neurological problems and immune disorders, including chronic lung inflammation leading to bronchiectasis.

“Specifically for Australia, we have all of the key components required for an effective response to this virus – indigenous clinical leadership; the medical research skills and capacity; and two forthcoming developments in treatment and vaccine development,” said Professor Damian Purcell, Head of Molecular Virology Laboratory, The University of Melbourne at the Doherty Institute and member of the ASHM HTLV-1 working group.

“But we need the support of the WHO and Australian Government to accelerate research and implement these strategies.”

ASHM have been advocating for the inclusion of HTLV-1 in the yet-to-be released Fifth National Aboriginal and Torres Strait Islander Blood-Borne Viruses and Sexually Transmissible Infections Strategy as a Priority Action.

Read the full letter available on the Global Virus Network website

‘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.