


Jill Margo

The world is waking up to an ancient virus that has silently been causing despair and premature death among people who don't know they have it.

While Central Australia has the world's highest rates of infection with this virus, it also exists globally in other disadvantaged communities. Because of the ease with which people now travel and the accelerated rate of human migration, awareness of the virus is slowly growing.

The virus can cause a range of complications regarded as mysterious simply because people have never heard of it. These complications are sometimes confused with premature ageing. It's called HTLV-1 which stands for the Human T-cell lymphotropic/leukaemia virus type 1 and is a cousin of HIV which causes AIDS. Because HTLV-1 is less virulent and has not yet hit wealthy urban areas in significant numbers, it has been largely ignored.

Shane Schinke began having "muscle twitches, like restless legs syndrome, and hyper-sensitivity to water or touch" on his feet. CHLOE ERLICH

Shane Schinke, 60, a remote area nurse and a project/research officer at the Baker Heart and Diabetes Institute, knows all about it now. A tall, lean man, he used to look forward to the evenings when he would run through the desert around Alice Springs, losing himself in its stillness.

Now he spends most of the day in a wheelchair because the virus has injured his spinal cord. But he regards himself as fortunate. It could just as easily have given him a galloping form of leukaemia that could have seen him dead in weeks. It could also have caused life-threatening complications such as end stage lung and kidney disease. His skin or eyes could have been affected too.



"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



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






"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."


"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



"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


"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.




"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."


"It's time to re-set the clock on HTLV-1," says Purcell.


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