Global experts are sounding alarm bells about an incurable HIV-like virus that is endemic among Australians living in remote communities.

There are no programs in place to identify why the Human T-Lymphotropic Virus type 1 (HTLV-1) – which has infected more than 40 per cent of adults in remote central Australia – is spreading, the Baker Heart and Diabetes Institute has found.

Indigenous Australians are likely to have experienced the highest prevalence rates of HTLV-1 in the world, Dr Graham Taylor, a clinician and professor at Imperial College London, said.

“The virus is neglected, and the diseases that it causes are neglected,” Dr Taylor told CNN.

“The interesting thing about central Australia, of course, is you can go back 25 years, and the high rates of HTLV-1 were published 25 years ago in that community.”

HTLV-1 infected 13.9 per cent of adults in Alice Springs in 1993, the Medical Journal of Australia found.

In 2018, more than 45 per cent of adults in Alice Springs had the virus, a rate thousands of times higher than for non-indigenous Australians, The Guardian revealed in April.

The prevalence of HTLV-1 in Australia is “off the charts” and “nobody that I know of in the world has done anything about trying to treat this disease before”, Dr Robert Gallo, from the University of Maryland School of Medicine, in the United States, told CNN.

“There’s little, to almost no, vaccine efforts, outside of some Japanese research,” he said.

“So prevention by vaccine is wide open for research.”

HTLV-1 – transmitted through breastfeeding, unprotected sex and blood-to-blood contact – attacks the immune system and can lead to leukaemia, lymphoma and bronchiectasis (a form of lung disease).

Those infected often experience flu-like symptoms early on, and can develop cardiovascular disease, diabetes and lower bone density in the longer term.

Traces of HTLV-1 DNA were detected in 1500-year-old mummies.

There is no licensed drug therapy to treat HTLV-1, Professor Damian Purcell from the Doherty Institute at the University of Melbourne told The New Daily.

“HTLV-1 is closely related to HIV in that it infects cells of the immune system, but the disease is slower in its manifestation,” he said.

“Once you’re infected, you’re infected for life and you cannot eliminate the virus.

“With a commitment of resources and effort, I would say within five years we would have the know-how and tools to stop new transmission.”

The Baker Heart Lung Blood institute in Alice Springs partnered with researchers from the universities of Melbourne, Sydney and New South Wales and submitted an application to the National Health and Medical Research Council for a research grant to investigate HTLV-1.

But this was rejected, possibly because there were not enough published research papers into HTLV-1 in remote Australia.

Researchers wanted to engage with the community to make them “principal players in governing the flow of information”.

“The Aboriginal committee praised the application, gave it good comments, but the medical researchers reviewing the application didn’t see it was worthy of even getting through to an interview,” Professor Purcell said.

“Maybe the team of mostly physicians in the outback were not seen to be competitive against the high-profile researchers in cancer or cardiovascular disease in the city.”

The virus affects one of the most marginalised groups of people in Australia, he said.

“Indigenous Australians don’t have a great voice in the medical sphere. Maybe that’s part of what happened here.

“There’s a very real possibility for the transfer of this virus into a broader group of people across Australia.”

Professor Purcell said HTLV-1 has been present “for probably as long as people have been in Australia”, and cultural practices have contributed to its spread among some communities.

For example, the practices of community breastfeeding and longer-term breastfeeding were associated with a more vigorous spread of the virus in Japan.

“We don’t want to trample all over and disrespect the cultural practices that are important for the identity of indigenous Australians,” Professor Purcell said.

“That’s one of the difficulties of talking about this and probably why it’s gone this long without a strong, or in fact any, response from the government.”