Indigenous Health Minister Ken Wyatt said the Federal Government was taking seriously the threat of a potentially deadly, sexually transmitted virus estimated to be carried by up to 10,000 people in Central Australia.
Top international scientists have called on the World Health Organisation to help control the virus – a cousin of HIV known as HTLV-1 – and to educate people about its dangers.
In Central Australia, infectious disease experts said the rates of infection from HTLV-1 were “disturbingly high” and more funding was needed for research to show that drugs being used to treat it overseas would work in Australia.
Like HIV, HTLV-1 suppresses the immune system and can lead to a fatal form of leukaemia, kidney failure, lung disease, inflammation of the spinal cord causing paralysis and other infections.
Scientists are only now just beginning to uncover all the effects of the ancient virus, for which there is currently no cure.
In one Central Australian study, nearly 34 percent of Indigenous people tested were found to have the HTLV-1 virus.
The rate was even higher for older men at 48.5 percent, said the Global Virus Network, an international coalition of virus experts.
Other countries where HTLV-1 is prevalent include Brazil, the Central African Republic, Gabon, Jamaica, Japan, Nigeria and Romania.
‘We are committed to tackling this’
“The Turnbull Government is committed to the health and wellbeing of Aboriginal and Torres Strait Islander Australians and is taking the issue of the HTLV-1 virus seriously,” Mr Wyatt said this week.
“As with our recent response to the issue of sexually transmitted infections and blood-borne viruses, we are committed to working with the states and territories, along with Indigenous communities and the health sector, as we investigate and tackle this condition.”
In a letter to WHO signed by 60 virus experts from the Global Virus Network, the virologists said HTLV-1 was “one of the most potent human carcinogens”.
They said like HIV-1 it could be transmitted through infected body fluids, unprotected sex, breastfeeding, sharing needles, blood transfusions and transplantation of infected blood and organ donations.
“As with most blood-borne and sexually transmitted viruses, the majority of HTLV-1 positive people transmit the virus unknowingly and are unaware that they are at risk of developing diseases caused by HTLV-1,” they said.
The Global Virus Network said HTVL-1 was discovered 37 years ago, just before the AIDS epidemic, but people with HTLV-1 have received “very little in the form of publicity, development of international clinical guidelines or financial investment into drug development and clinical trials”.
About five to 10 percent of people with the virus go on to develop a fatal form of leukaemia.
Very high rates of infection
In Alice Springs, Dr Lloyd Einsiedel, head of Infection and Chronic Disease at the Baker Heart and Diabetes Institute, said there were “very high rates” of the infection across small communities in Central Australia.
They were also seeing people testing positive from across the WA border.
He said up to 10,000 people could have the virus.
Although Dr Einsiedel said people should not panic, he said “I think it is more dangerous than people thought in the past”.
“What we really need as a nation is a national response,” Dr Einsiedel said.
“It needs to include not only Central Australia but other jurisdictions including WA.
“And it needs to have an Aboriginal governance structure.
“Aboriginal people are the ones who are going to solve this problem, but they need support to do it,” he said.
Dr Einsiedel said work on the virus needed to be expanded into South Australia and WA.
“We’ve been invited to communities in WA, but we don’t have the funds to go,” he said.
He said if people thought they may have picked up the virus, it was worth having a blood test.
There also needed to be pre- and post-test counselling available for patients, he said.
Piecing together the puzzle
Professor John Kaldor of health research organisation Kirby Institute said HTLV-1 had been around for possibly thousands of years.
He said within Australia it seemed to be localised in some Aboriginal populations.
“We don’t have a fully comprehensive picture, but we think it is probably in certain regions and not throughout Australia,” he said.
Professor Kaldor said medical experts were only now developing a full picture of diseases related to HTLV-1.
“There has been some degree of uncertainty as to what other diseases it causes,” he said.
“Is it an infection that sits there and doesn’t do much damage or is it an infection that causes serious illnesses?
“We’ve known that it can cause very serious illness, a particular type of leukaemia, but that’s something that will probably occur in five percent of people over the course of a lifetime.
“The leukaemia is a terrible disease if you do get it, but it’s usually a disease that occurs after having an infection for decades.
“We’re starting to get a picture now that there are other diseases which seem to be strongly related to it and that’s where the new evidence has probably raised concern.
“It was also a question of how do you prioritise it in comparison to other health conditions, chronic kidney disease, diabetes or other long-term issues that needed to be addressed by health services?
“We didn’t necessarily have clear and effective approaches for prevention and approaches and that’s something that there is more of a focus on now.”
Professor Kaldor said it was important any preventative and treatment strategies were developed with the full collaboration of affected communities.