About HTLV-1 Research
The Baker is part of a consortium trying to understand the impacts of HTLV-1 in Central Australia. We are identifying the pathways that contribute to HTLV-1 associated diseases through scientific research that is rigorous and culturally appropriate.
The Baker Heart and Diabetes Institute Central Australia, located in Alice Springs, was founded in 2007 becoming the second health and medical research institute to be located in the Northern Territory and the first in Central Australia. It was established to help address the profound disadvantage experienced by Aboriginal people in central Australia and throughout the Northern Territory through scientific research that is rigorous, culturally appropriate and ethically sound.
The Human T-cell Leukaemia Virus Type-1 (HTLV-1) infection has been present at high levels for a very long time in Central Australia. In the absence of rigorous data about its consequences, it has been difficult to develop strategic plans for its control. Developing a process to manage endemic HTLV-1 infection would present enormous and unique challenges to remote Australia, and would require an integrated epidemiological, public health and clinical response that is controlled by affected communities.
After a decade of preliminary work and linking with international experts, we now have the tools, clinical and research expertise, and Indigenous governance frameworks in place necessary to make real advances in understanding this ancient viral infection. The Baker Institute is leading a consortium of research partners in an HTLV-1 research program that is designed to determine the geographic extent of HTLV-1 in remote Australia, to undertake a detailed assessment of the impact of HTLV-1 infection on the health outcomes of Aboriginal Australians living in remote communities, to facilitate the development of clinical and public health guidelines for health care providers and people living with HTLV-1 and its complications, and to provide an overall community education and information framework for HTLV-1.
The Baker’s local profile and reputation has been instrumental in the successful recruitment, laboratory and viral testing of 1200 participants. Our exclusively Aboriginal research team visited dozens of Aboriginal communities in Central Australia — some very remote — to explain the study and engage community members. The preliminary data show huge regional variability, but overall a lower prevalence of infection than was previously reported.
At this stage, the leadership of the follow-up portion of the study (which will occur through data linkage) will pass to our colleagues at the Kirby and Menzies Institutes. We anticipate that this process will provide information about who is at risk for the development of medical problems. We anticipate reports from this study will emerge over the coming years.
While HTLV-1 research at the Baker Institute places emphasis on the needs of people in Central Australia, our expertise in research spans many other jurisdictions and enables contributions in Aboriginal and Torres Strait Islander health spanning from major cities to the most remote communities in Australia and collaborations which address global Indigenous health.
We are committed to ensuring that Aboriginal and Torres Strait Islander people are engaged and in control of their own health. Our 'way of doing business' includes working with and empowering Indigenous community-controlled organisations. We also have a focus on facilitating employment and capacity building of Aboriginal and Torres Strait Islander people within our organisation.