Media Release

Monday, 6th November 2017:
Canberra, Australian Capital Territory

As new national statistics reveal an unprecedented spike in new HIV infections in Indigenous Australians, a little known HIV-related virus has been found to be highly endemic to Australia’s remote communities. However most people with the infection don’t even know they have it.

“We are desperately seeking action and commitment from Government to eradicate this deadly virus,” says Dr Lloyd Einsiedel, Executive Director Central Australia, Baker Heart and Diabetes Institute, who is holding a special session on the topic at the Australasian HIV&AIDS and Sexual Health Conferences in Canberra today.

HTLV-1 is a virus that is acquired from breast milk; sex and – prior to the introduction of testing of HTLV-1 – blood transfusions.  Indigenous communities in central Australia have the highest prevalence rates in the world, exceeding 50 per cent for adults in some remote communities surveyed so far. The virus is associated with a rapidly fatal form of leukaemia, inflammation in various organs including the lungs, and an increased risk of other infections.

To date, there has been no coordinated response to either inform Indigenous residents of the existence of the virus or to suggest strategies that could reduce their risk of acquiring it. Health experts gathered at the conferences now demand action.

HTLV-1, like HIV, affects the immune system, however not everyone infected with HTLV-1 goes on to develop a life threatening medical condition. For those that do, the prognosis is very poor with a high risk of complications and death. For example, HTLV-1-associated bronchiectasis, a chronic lung disease, is a leading cause of death for young adults at the Alice Springs hospital.

The Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) – led by the recently deceased CEO Levinia Crooks – has been spearheading efforts to push for a national response, but says that little has been done since the virus was first found in remote communities in 1988.

“The recognition of HTLV-1 as an emerging issue in the previous Fourth Aboriginal and Torres Strait Islander BBV National Strategy was a positive step towards action on this issue. However, this recognition has not transformed into further funding for action or research on HTLV-1. ASHM has continued to advocate for inclusion of HTLV-1 as a Priority Area for Action throughout the development of the Fifth National Strategy, expected to be released in 2018,” said ASHM’s Acting CEO Scott McGill.

“We urgently need to better understand the effect of this virus in Indigenous communities and this must be done with Indigenous guidance and leadership,” said Dr Einsiedel.

“In the meantime, there are things we could and should be doing:

  • HTLV-1 should be added to the list of diseases that are preventable with safe sex;
  • We need a health literacy program to inform people of this virus and its major modes of transmission;
  • Research is needed to understand the risk factors for transmission to Indigenous children and to develop a culturally appropriate response;
  • We need education for the public and health care workers - confusion with HIV is common, even in health care settings;
  • We need research to determine how the virus causes inflammation so that we can develop therapeutic agents, and
  • We need a vaccine.

But most importantly, we need recognition of the problem and a commitment to do something about this,” he said.


Available for Media Interview

Interview:  Dr Lloyd Einsiedel, Executive Director Central Australia, Baker Heart & Diabetes Institute

Media Contact:  Petrana Lorenz 0405 158 636


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Indigenous Australians dying from HIV-related infection on Monday 6 November 2017


In the News

Dr Lloyd Einsiedel, Executive Director Central Australia, Baker Heart and Diabetes Institute, was interviewed by Radio National Presenter Fran Kelly.

Listen to the radio interview with Dr Lloyd Einsiedel on ABC Radio National Breakfast


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​More about the Australasian HIV&AIDS Conference

The Australasian HIV & AIDS Conference is the premier medical/scientific conference in the Australasian HIV and related diseases sector. The 2017 Conference was held in Canberra from 6–8 November, in conjunction with the Australasian Sexual Health Conference.

The conference was first launched in 1989 in response to the emerging area of clinical care for HIV. Since its inception as a small meeting of medical practitioners brought together under the umbrella of ASAP (the Australian Society of AIDS Physicians) the HIV&AIDS Conference has grown into the region’s premier medical/scientific conference in the HIV and related diseases sector, attracting speakers and delegates from around the world.

Since 2005 the Conference has been held back-to-back with the Australasian Sexual Health Conference with one full day of overlap, providing a unique opportunity to look at HIV in the broader context of sexual health. Together, the conferences attract more than 1000 delegates from across the region.

Delegates to the conference come from a range of professional backgrounds including basic science, clinical medicine, community programs, education, epidemiology, indigenous health, international and regional issues, nursing and allied health, policy, primary care, public health and prevention, and social research.

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View the conference speakers

View the conference program