25 May 2018
A major new taskforce will focus on Australia's response to the blood-borne virus HTLV-1, found in Aboriginal communities at 1000 times the rate of anywhere else in the world.
The Federal Government will establish a new $8 million taskforce of doctors, Aboriginal health organisations and all levels of government, focused on HTLV-1, or human T-cell lymphotrophic virus type 1.
There is currently no strategy in Australia to prevent the virus, transmitted by unprotected sex, blood contact and breastfeeding, which can cause a rapidly fatal form of leukemia, and debilitating spinal cord inflammation.
As the ABC revealed last month, research by the Baker Heart and Diabetes Institute suggests thousands of Indigenous people in Central Australia unknowingly have HTLV-1, which can cause serious disease in 5–10 per cent of carriers.
There is no vaccine, and the test for HTLV-1 is not subsidised in Australia, but the Health Minister Greg Hunt told ABC he wanted "rapid action for early testing" and would ask the Medical Benefits Schedule (MBS) Review Taskforce to investigate.
"If we have a test, we can have treatment and we can also engage with research on a cure, so this can make a profound difference to the health of mothers and babies."
"This is something we need to address on our time, on our watch, and that's what we're doing,"
Ancient virus affecting millions around the globe
The World Health Organisation is also considering its response to HTLV-1, convening a meeting of Australian and international public health experts.
At the agency's annual World Health Assembly in Geneva, chief medical officer Professor Brendan Murphy told ABC "preliminary" talks were held to, "understand the epidemiology of HTLV infection and what actions might need to be taken".
In several communities in the Alice Springs region, 45 per cent of adults have HTLV-1, and the virus is also associated with a severe, and often-fatal, lung condition called bronchiectasis.
Researchers at the Baker Institute are collaborating with five remote Aboriginal communities — which can't be named for privacy reasons — to understand how widespread the virus is in desert communities.
HTLV-1 is a distant relative of HIV and was detected in 1979 in the United States, and later identified in Indigenous communities in Australia in 1988.
The virus is endemic to populations in Japan, the Caribbean, West Africa and South America.
Orphan' virus urgently needs more research: experts
Since Australia's rate of HTLV-1 infection was publicised, there had been a renewed push by HTLV-1 researchers around the world to prevent its spread.
Dr Louis M Mansky from the Institute for Molecular Virology at the University of Minnesota told ABC he regarded HTLV-1 as an "orphan" virus and was shocked by the rates of infection in Australia.
"There's now a great awareness and interest in the Indigenous population of Australia, given how high the prevalence rate is," he said.
Dr Mansky has led new research on the spread of HTLV-1 from cell to cell.
"It's a critical part of the virus to be successfully transmitted from an infected individual to a newly infected individual, and that's been our focus for many years now," he said.
Dr Mansky said HTLV-1 was currently an "untreatable disease" because there had not been enough research on the retrovirus.
"It's also quite clear that [patients] feel orphaned by society — that nobody's really paying attention or really caring," he said.
"Many people have not heard of HTLV-1 and it's not had any impact on their lives, but if you do know someone, if you have been affected, it changes your whole outlook on life, quite negatively."
Mr Hunt said Australia needed the help of other countries, "to understand what has worked".
Stay on top of the latest findings with our newsletterSubscribe