Dr Lloyd Einsiedel, a Flinders Medical Centre infectious diseases physician, is investigating the human T-cell lymphotropic virus type 1 (HTLV-1), a largely unheard of disease which first surfaced in Australia in 1988.
HTLV-1 currently infects at least 10 million people worldwide and is endemic in Australia’s remote communities.
Indigenous populations in the north-west of South Australia may be the country’s worst affected, with 60 per cent of all patients from this area in Alice Springs Hospital infected with HTLV-1.
As part of the project, Dr Einsiedel will work on the ground in remote communities to demonstrate the rate of HTLV-1 and the spectrum of HTLV-1 related diseases, as well as identify strategies to prevent transmission.
The project was awarded almost $900,000 by the National Health and Medical Research Council in October and follows a hospital study which demonstrated respiratory disease, other inflammatory diseases, malignant cancers and a predisposition to parasite infections, such as scabies and Strongyloides, among patients infected with HTLV-1.
While the prevalence of HTLV-1 in other parts of the world, including Japan and Central America, has been widely documented, Dr Einsiedel said its presence in Australia remained largely unreported and no attempt had been made to control transmission.
“HTLV-1 is associated with significant mortality and morbidity,” Dr Einsiedel said.
“The longest any Indigenous patient from central Australia with adult T-cell leukaemia/lymphoma has survived after diagnosis is six weeks, so it’s usually rapidly fatal. But there are arguably worse scenarios. You get leukaemia, that’s terrible, but it’s not that common and you die very quickly.
Respiratory disease is much more frequent and possibly worse.
“HTLV-1 associated bronchiectasis results in substantial illness and death at a median age of 44. People die over a period of 20 years, very slowly, with chronic cough, respiratory problems and ultimately respiratory failure.”
Australia has the highest known prevalence rates of bronchiectasis in the world and HTLV-1 infection contributes substantially to these high rates in HTLV-1 endemic areas, explained Dr Einsiedel.
“Outcomes are worsened by co-infection with Strongyloides stercoralis – a parasite that is endemic in some communities due to poor sanitation – and the likelihood of recurrent lower respiratory tract infections in a setting of social deprivation,” he said.
The endemic area in Australia is vast, stretching thousands of kilometers trough the Outback from the north-east of Western Australia to the Goldfields on the other side of the border right through to South Australia.
“The rates are phenomenally high in Australia and that reflects the fact that we’ve just done nothing about this issue – we’re a long way behind other countries,” he said.
“There’s a huge amount of health literacy work that needs to be completed and unfortunately, because we’ve done nothing for almost 30 years, we’re trying to do the sort of work that defines what the problem is now and that means we’re a long way behind the game so we have to catch up.”
Despite there being limited opportunity for a cure, Dr Einsiedel believes HTLV-1 could be eradicated in Australia by preventing infection through breastfeeding and sexual intercourse.
While the ability to provide alternatives to breastfeeding are challenging in resource poor communities, incidence rates in Japan have been markedly reduced by early weaning.
Dr Einsiedel said his findings “demanded a public health response to control HTLV-1 transmission, particularly to Indigenous children who are at greatest risk”.
The research team will work with communities to develop culturally sensitive strategies to prevent transmission.
HTLV-1 affects communities in South America, Peru and Brazil and is very common in central Africa, Japan, Melanesia and Papua New Guinea.