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.

Quick guide What is HTLV-1? Show Hide What does HTLV-1 do? Human T-lymphotropic virus type 1 is spread through contaminated blood, unprotected sex and breastmilk. Like HIV, there is no cure. Like HIV, the virus causes potentially fatal complications but unlike HIV it takes much longer for symptoms to appear. Some people carry the virus for 30 years before chronic complications appear. Five to 10% develop a rapidly fatal form of leukaemia – nearly all of those will die within 12 months of diagnosis. Other life-threatening complications include kidney failure, lung disease, inflammation of the spinal cord leading to paralysis and other infections. The higher the viral load in the bloodstream, the more likely serious the symptoms. Who’s at risk? HTLV-1 infects up to 20 million people worldwide. It’s endemic to sub-Saharan Africa, South America, Papua New Guinea, Japan and central Australia, which has the highest transmission rate in the world. Essentially, once it has taken hold in an area, it is impossible to eradicate. Why isn’t there a vaccine? HTLV-1 was discovered in te 1980. It was eclipsed in scientific interest by the 1984 discovery of HIV, which caused a global epidemic. Possibly as a result, HTLV-1 has been neglected by the global research community. Testing, research and clinical treatment need to be conducted before any cure can be sought. Japan is most advanced in treatment. It has reduced the transmission rate over time by 80%, through mass testing, and is trialling drug treatments. In 2014, the Global Virus Network set up an HTLV-1 taskforce, led by experts from 11 countries, to help speed up the development of drug treatments and vaccination, and educate the general public.

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.

We should work quietly, telling people in language. We should show love and care to people who are sick

Despite its high prevalence here, HTLV-1 is considered by the world to be a neglected virus. Its obscurity is such a source of shame that this softly spoken grandmother agreed to talk to Guardian Australia on condition that we don’t use her name or reveal where we are sitting.

“People are scared,” B says. “We should work quietly, telling people in language. We should show love and care to people who are sick.”

Researchers say HTLV-1 is more widespread across central and northern Australia than previously thought. Dr Lloyd Einsiedel is an infectious diseases clinician with the Baker Heart and Diabetes Institute based at Alice Springs hospital.

“We cover all the way out to the western desert and we have patients from northern South Australia, and it’s endemic throughout our entire catchment area of a million square kilometres,” Einsiedel says.

“So it’s very suggestive that we have a major problem and it really pays no attention to borders, these very artificial constructs of Europeans.”



Einsiedel worries there will be “significant mortality” over the next five to 10 years from HTLV-1 related bronchiectasis (lung disease). The region already has the highest reported prevalence of adult bronchiectasis in the world.

I suspect we would have dealt with the problem before now if it was in Sydney Dr Lloyd Einsiedel

Einsiedel says testing and treatment are a priority. There also needs to be a public awareness campaign in Aboriginal languages, and all remote area health workers need to be educated too.



However, HTLV1 presents a unique set of problems.



First, the world doesn’t know enough about it. In the early 1980s, HTLV-1 and HIV were discovered around the same time but HIV was a major global emergency that rightly got attention. HTLV-1 was thought to be asymptomatic; people might carry it their whole lives and never show any adverse effects. Five to 10% of patients might develop fatal lung disease or leukaemia in later life but most would be fine. A map of the world’s HTLV-1 hotspots reveals another clue as to why it’s so neglected.

“There are close to 20 million people affected and they don’t live in Sydney or Tokyo,” Einsiedel says. “These are people who overwhelmingly live in Papua New Guinea, the Congo, Peru. They’re the poorest members of society. In terms of drug companies and media interest, there’s very little in the way of advocacy.

“Even if it didn’t cause anything else, I suspect we would have dealt with the problem before now if it was in Sydney,” he adds wryly.

Einsiedel sees this disinterest as a major barrier to research funding.



“We need the NHMRC’s support to address this issue.”

“People are dying now. It’s associated with death, this virus. If you can’t control the amount of virus in your blood, you’re at risk of very bad outcomes.

What is HTLV-1? The devastating health crisis afflicting central Australia Read more

“We could move now with a public health message around HTLV-1 and sexual transmission.

“Then we need to look after the people already infected. That means we need to give them clinical support and we need to stratify risk so that we’re not frightening people.”

In central Australia, “stratifying risk” means testing to identify not just who has HTLV-1 but their viral load. The higher the amount of virus in the bloodstream, the greater the risk of serious complications like lung disease.

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The six-month wait

Which brings us to problem two. The HTLV-1 blood test is not covered by Australia’s medical benefits scheme (MBS). It costs $169 each time it is performed, there is only one HTLV-1 laboratory in Australia and results can take six months to come back because, at present, these are done as part of a research program. All the testing Einsiedel and his team have done so far – more than 900 people – they have paid for using an NHMRC project grant.

If you or I go to the pathologist, we want our results back in three days. But for an HTLV-1 test we’re looking at six months-plus Joel Liddle

Arrernte man Joel Liddle is a senior research officer with Baker. He spends much of his time talking with people in their primary languages (he is learning Arrernte language), taking blood, measuring lung capacity and delivering “feedback” (test results) as kindly and respectfully as he can. When he is not on the road, he is writing research papers or he is in the lab, prepping blood samples.



“The length of time it takes to get a test is a major problem,” he says. “We’re not currently funded for the testing process and there’s only one place in Australia that’ll do a HTLV-1 test, and that’s in Melbourne.

“If you or I go to the pathologist, we want our results back in three days. But for an HTLV-1 test we’re looking at six months-plus turnaround. It’s not a priority, its not on the MBS, it’s something we have to be hugely mindful of when we’re going bush, that people want their results. This is something that needs to be immediately examined as a priority.”

Could the federal government make the test available on the MBS? Einsiedel smiles ruefully.

“I hope that will happen. I hope,” he says. “I spend most of my life in hope.”

‘Can we Google this?’

Making health professionals aware of HTLV-1 is just as urgent. Shane Schinke is research manager at Baker. He joined the team in May last year, after spending 11 years as a remote area nurse in the western desert. At the end of 2016, he found he had trouble walking, and the symptoms grew steadily worse.

Schinke came to Alice Springs hospital, where Einsiedel tested him for HTLV-1.

“Then I was sent from Alice Springs to Adelaide. I won’t name hospitals because they were really good. They were looking at everything and couldn’t find anything.”

While in Adelaide, the results arrived: he was HTLV-1 positive.

“Once we had the result, the specialists were basically at my bedside going ‘oh, can we Google this?’” he says. “These are specialists and they hadn’t heard of it, I hadn’t heard of it and a lot of people in the health profession haven’t heard of it. Quite frankly, had I not been here in Alice Springs, I wouldn’t have even had the test. I still would not know that I’m HTLV-1.”

Facebook Twitter Pinterest Shane Shinke, who works at the Baker Institute and is HLTV-1 positive. Photograph: Anna Cadden/The Guardian

Schinke is in a wheelchair these days.

“It’s caused a spinal cord injury for me, so I can speak from my own experience, but I’m interested to bring awareness. People say HTLV-1 exists but it doesn’t do anything … and they even say it to my face.” He gestures to his chair. “And I’m going OK, well maybe I’m just dreaming?

“I’m the only caucasian I know in Australia who’s diagnosed HTLV-1 but how do we know that? We’re not testing. So I’m very careful not to stigmatise Aboriginal people with ‘it’s a blackfella disease’. We had that same thing with HIV – it was a ‘gay disease’ – and people would stigmatise.

“If this was affecting non-Aboriginal people we’d have a completely different spin on it. From my perspective, even if I was the only guy, I’d be doing something about it because my quality of life has been affected. Irrespective of what’s going to happen with the virus, I have a spinal cord injury. Had there been an early detection we could have stopped the process before it got to my spinal cord, so there’s a lot we can do in the prevention phase.

“There’s a massive problem out there but it’s not as hopeless as it might sound. If we have the right circumstances, equipment and early detection there’s a lot more we can do.”

Liddle agrees. He thinks there should be an HTLV-1 clinic in central Australia.

“While we don’t have those things, there’s only so much we can do, and we’ve only got a small team. But that’s why we’re here, because we’ve spent enough time travelling bush to know that something is not right, and we care enough about it to do something.



“I’ve been travelling bush for 10 years, all through the NT, SA and WA, and in my own Aboriginal family I see firsthand all this ill health,” he says, explaining that HTLV-1 thrives in conditions where environmental health is so poor.

“We’ve got people in their 20s on dialysis. Who’s on dialysis in their 20s? It seems like everyone’s got diabetes, high blood pressure from their early 30s, lung disease – all of this stuff is rampant and … Unfortunately we know that because we’re remote here and it’s happening to Aboriginal people, so it’s out of sight, out of mind a lot of the time.”

The breastfeeding conundrum

The only other first-world hotspot for HTLV-1 is Japan. How it took hold there is still a mystery but it was first discovered in the 1980s, and the main form of transmission was from mother to child through breastfeeding. Researchers found that, for the first six months, a baby was protected by her mother’s antibodies but, as those antibodies were lost, the risk of transmission increased exponentially. In Japan the current advice for mothers with HTLV-1 is not to breastfeed at all or to do so for less than three months, but in resource poor areas this is thought not to be appropriate. Through rigorous testing and public education, Japan has reduced its transmission rate by 80%.

That kind of approach may not work in central Australia. It certainly runs counter to the popular mainstream message that “breast is best”, and it raises questions about how mothers feed their babies in remote communities where nutritious food is expensive and hard to come by. Culturally, breastfeeding is a big part of how children are cared for. Liddle says: “We see children breastfed until they’re four and five years old around here.”

We cannot allow a hysterical response, let alone for it to become yet another item of negative, deficit reporting of our people Donna Ah Chee

Central Australian Aboriginal Congress is the largest Aboriginal community-controlled health organisation in the Northern Territory. The last thing Congress wants is for mothers to stop breastfeeding out of fear. Its CEO, Donna Ah Chee, says a “potentially devastating” problem like HTLV-1 requires a careful response, one that is devised and led by Aboriginal people.



“As any mother in any culture in the world would know, the prospect of unknowingly causing harm to your child through this virus is beyond understanding,” she says.

“For this reason we cannot allow a hysterical response, let alone for it to become yet another item of negative, deficit reporting of our people.”



To avoid mass panic – and for there to be any chance of success – Ah Chee says the response must be culturally safe and community-led. There might need to be changes to health screening, doing it “the right way so it doesn’t make people feel shame”.

“The role of Aboriginal community-controlled primary health services will be critical in working through the issue of HTLV-1. Through our sister Aboriginal community-controlled services in Western and South Australia, we must develop a public health response covering education and prevention,” she says.

“And we have to do it very carefully. What we don’t want to happen is mothers who stop breastfeeding.”

The need to avoid panic has been always been the cause of trepidation for researchers who have tried to tackle HTLV-1 in the past, and why the virus never seems to leave the too-hard basket.

Facebook Twitter Pinterest The Macdonnell Ranges outside Alice Springs. Central Australian health workers want the HTLV-1 response to be community-led and culturally appropriate. Photograph: Anna Cadden/The Guardian

Prof John Kaldor from the Kirby Institute for Infectious Diseases has been tracking HTLV-1 and supports Einsiedel’s work.

“The research community has known about HTLV-1 for decades but there’s been considerable uncertainty about how to respond to it among many competing health priorities,” Kaldor says. “New research is starting to clarify who is most at risk of disease progression and should be harnessed to develop prevention and treatment guidelines.



“The public health dilemma is how to develop guidelines and do research in a way that supports affected individuals and communities.”

Vaccine research overdue

Slowly, the world’s virologists are coming to admit they could have done more, and now is the time to make amends.

Dr Robert Gallo is the director of the Institute of Human Virology at the University of Maryland’s school of medicine, and one of the world’s most eminent scientists. In 1984 he co-discovered HIV, helping prove the link between HIV and Aids. Prior to the Aids epidemic, in 1980 Gallo was the first to identify HTLV-1 as the only known human leukaemia virus.

I don’t know how hard it’s been tried. We never did … We could do much better Dr Robert Gallo

Late last year he spoke about HTLV-1 at a Melbourne meeting of the International Global Virus Network, a group of world leading virologists.

“I think it’s time to be a bit more muscular for HTLV-1, this virus that’s been forgotten about,” he says.

“You might ask, why isn’t there a vaccine against HTLV-1? I don’t know how hard it’s been tried. We never did. I heard they’re trying in Japan. But we need to stimulate more governmental involvement, we need to push the importance of the disease, the seriousness of it. We could do much better. We need to do significantly more with HTLV-1.”

The Japanese have developed an antibody that will target the affected cells and destroy them, delivered via an injection every few months. A clinical trial is underway. Einsiedel hopes maintaining links with his counterparts in Japan will pay off, because that’s where treatments will be developed.

He hopes he will find funds to continue his work. A spokesman for the federal health minister, Ken Wyatt, told Guardian Australia: “The government has allocated $6.1m to the Central Australia Academic Health Science Centre, with its first priority project to be a study addressing HTLV-1.”

Out on the edge of the riverbed, it’s gone midday. The sky is an uninterrupted, brilliant blue. It is a beautiful, silent place, watched over by tall river gums. A few wild horses graze on distant pockets of grass. It is hot, though, and we are done sitting on this upturned log in the bright sunshine. B pauses before she stands.

“In the past, all our people been dying with this thing,” she says. “We need more medicines for our kids’ future too. We want strong people to be speaking up to the health department and governments to give us money to fight this – or Aboriginal people won’t have a future.”

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