Instead, it attacked his immune system, inflamed his nerves and disrupted important daily functions. Would it have helped him to know he had this virus when he began developing symptoms a few years earlier?

“Yes, there is a high likelihood it would have helped,” Schinke says. “While I couldn’t eradicate the virus, I would have started an intense anti-inflammatory regime to halt its progression and protect myself from further damage.”

But there was so little awareness of HTLV-1 that when he saw classic symptoms in his patients, he never recognised them as complications of this virus. Central Australia has the highest level of bronchiectasis on the planet. In this lung condition the airways become so damaged, the person can’t clear mucus. Schinke knew what his patients had, but never knew why.

Cancer-causing virus

HTLV-1 was the first infectious agent discovered to be a direct cause of cancer and is still regarded as the most potent cancer-causing virus in existence. It spreads from infected lymphocytes the same way as HIV, through unprotected sex, close contact with fresh blood, organ transplants and breast feeding.

While some measures to prevent infection have been taken, such as screening of donated blood products in parts of Africa, the Caribbean, Iran and Australia, the global effect of this has been paltry. Japan, however, has had dramatic success with routine antenatal screening and formula feeding of babies of HTLV-1-positive mothers.

But routine screening programs for sexual transmitted infections or needle exchange do not include this virus and many doctors have not heard of it. And there is very little evidence of it among potential blood donors to Australia’s Red Cross, which has been testing for it for 25 years

However, routine exclusion of donors with risky behaviours would remove most potential sources. In 2016, only five infections were detected among donations and all were in first‑time donors, born overseas.

There is no blood collection centre in Central Australia. The Blood Service says the remoteness of communities with high rates of infection, combined with extreme social disadvantage and poorer health outcomes, results in people from such communities being extremely unlikely to donate blood. Most people infected with it don’t develop complications and are never the wiser.

HTLV-1, which stands for the Human T-cell lymphotropic/leukaemia virus type 1, is a cousin of HIV which causes AIDS. Supplied

Schinke, now 60, wasn’t so lucky. Having had no significant health issues in his life, two years ago he began having trouble walking. It got progressively worse and his doctors in Alice were mystified. Just before sending him down to Adelaide for further investigation, they tested him for HTLV-1. He arrived ahead of this test result and the Adelaide doctors were equally puzzled.

“Then the results arrived. I was HTLV-1 positive. Quite frankly, had I not been in Alice, I wouldn’t have had the test and would still not know why I need a wheelchair.”

The diagnosis sent him to Google and things fell into place. For two or three years before the walking difficulties became obvious, he was already having symptoms, but explaining them away. He’d put his urinary problems down to his prostate and his constipation down to his diet. The lethargy and the loss of weight were harder to explain. So were the muscle spasms, the change in gait and the fact that he was bumping into things.

“While running there was weakness in my legs. ‘Pull yourself together man!’ I told myself, but however hard I tried, my legs would not go into second gear. Although I’d been used to looking after myself for so long in the desert, I started to become concerned. I began having muscle twitches, like restless legs syndrome, and hyper-sensitivity to water or touch on my feet. I also had a tremor in my left hand.”

Melbourne University researcher Damian Purcell says “sporadic cases are turning up in major hospitals in Australia”. Photo: Richard Timbury

Schinke was prepared to talk about his experience only because he wants to spread awareness and the need, in some cases, to test for the virus. His disease is one of the rarer complications and is called HTLV associated myelopathy/tropical spastic paraparesis, or HAM/TSP.

“While we don’t have many reported cases, we do have people with unexplained neurological disorders. I wonder how many others, like me, have symptoms they can’t explain? If you don’t look you don’t find – and while I’m not suggesting we need blanket screening for HTLV-1, when there is an indication, I think we should test for it.”

He says recent research from the Baker, into five remote Aboriginal communities and two town camps in Central Australia, found 30 to 50 per cent of adults tested positive for it. As Schinke does not have Australia’s unique strain of the virus, he knows he was infected aboard. He has the ‘cosmopolitan’ strain which he believes he acquired 40 years ago, either through unprotected sex or a blood transfusion. This makes sense because he was overseas at the time and the virus typically lies dormant for decades before complications arise.

“I’m very careful not to stigmatise Aboriginal people saying, ‘It’s a blackfella disease’ because we had the same thing with HIV – we called it a ‘gay disease’ and people were stigmatised. But this virus has been known about for 40 years and I believe that if it was affecting non-Aboriginal people in Australia, we’d have a completely different spin on it.

“Absolutely zilch has been done about it”, partly because only 5 per cent people who are infected actually get ill. To this day, most don’t know why they are ill. While it is only a notifiable disease in the Northern Territory, there is a massive problem out there. But it’s not as hopeless as it might sound. There’s a lot more we can do.”

Feeling hopeful

So, is it likely there are others around Australia with unexplained symptoms who, if tested, might turn out to be HTLV-1 positive?

“It’s a likely scenario,” says HTLV-1 researcher, Professor Damian Purcell of Melbourne University. “Indigenous people are increasingly integrating into the general Australian society and this is a virus that doesn’t pay attention to cultural groups, it just looks for an opportunity for transmission. Sporadic cases are turning up in major hospitals in Australia with infections that lead to leukaemia or other consequences from poor immune function.”

He says it is time to think about how this virus might spread through places such as the prisons. Purcell, head of the molecular virology laboratory at the Doherty Institute, began working on HTLV-1 more than 30 years ago but switched to HIV which was then more pressing. Now he’s back and, inspired by the victories against HIV, is feeling hopeful about HTLV-1.

But he is realistic too, saying rates of infection in some indigenous communities are 10 times higher than any other place in the world.

“This is preventable and no one needs to have it. We need to take prevention seriously. We also need to further advance options for counteracting the debilitating effects this virus. Drugs for HIV and Hepatitis C have not only transformed the lives for patients, they have had a knock-on effect. They prevent transmission because they make the infected person untransmissible.

“There are new opportunities to address HTLV-1 with drugs, if not to cure it but dramatically to wind back the transmission, so that eventually the problem won’t exist.”

“We are very encouraged by emerging research in Australia, that shows it is possible that some of the drugs already licensed for HIV have potential to prevent the transmission of HTLV-1. It’s invigorating to be back. I have a lot of optimism that research will lead to something that will really make a difference.”

There is strong evidence that world interest is HTLV-1 is stirring. In 2017, more than 50 illustrious authors and organisations wrote to WHO with a call to action. In 2018 The Lancet ran the letter and in Australia, the government announced it would commit funds for research taskforce. A collaborative forum agreed a major long-term study was needed, as were clinical guidelines and better options for testing.

“It’s time to re-set the clock on HTLV-1,” says Purcell.

Jill Margo is an adjunct associate professor at the University of NSW.

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