New study seeks to understand contemporary experiences of living with HIV in Australia

A new study led by the Kirby Institute at UNSW Sydney will explore the impact of support services on the experiences and wellbeing of people who have recently been diagnosed with HIV in Australia.

Although HIV diagnoses in Australia are declining, and PrEP, the HIV prevention pill, is available on the PBS, each year around 1,000 Australians are still being diagnosed with HIV. This new study, called Recent diagnosis and the Impact of Support on the Experiences of HIV, or RISE, will be the first study globally to take a deep look at contemporary experiences of people diagnosed with HIV. 

“Although we have come a long way in the past thirty years, with improvements to medications and knowing that treatment as prevention works, being diagnosed with HIV is still a significant event for an individual,” says Mr Brent Clifton, who is coordinating the study. “By engaging with the experiences of people who have recently been diagnosed with HIV, we’re hoping to find out why some people living with HIV today experience better care and wellbeing outcomes than others, and ultimately uncover the data that will allow us to fill these gaps.”

“When we look at people’s experiences along the continuum of care, from prior to HIV diagnosis, through to diagnosis and ongoing treatment, we are still seeing gaps in the ways different groups of people are engaging with services, and in their general wellbeing,” continues Associate Professor Garrett Prestage, who is the lead researcher on the study. National data shows that despite reductions in HIV transmission overall, the rates of infection in Aboriginal and Torres Strait Islander populations remain 1.6 times higher than the Australian-born non-Indigenous population, and there are increases in transmission rates among heterosexual people, with a 10% increase in the past year.

Australia is considered a world-leader in HIV prevention and management, with community-linked organisations central to delivering education and support programs over the past thirty years.  However, the leadership, delivery and resourcing of these organisations and programs varies across the country. Further, there is an overall lack of systemic data on the outcomes of support and awareness programs and services, and the personal factors that contribute to an individual’s experience of being diagnosed and living with HIV, so it is challenging to identify exactly what aspects of these services are hitting the mark, and where things can improve.

“By speaking with people across the country who have been recently diagnosed with HIV, we are confident that their insights will give us a better understanding of how we are tracking as a nation with our current supports, and hopefully enable the development of better services that truly meet the needs of people living with HIV today,” says Mr Clifton. 

The RISE study is seeking to engage with any person living in Australia who has been diagnosed with HIV since 2016 and is aged 16 years or over. To find out more about the study, and to sign up, visit

Date published: 
Friday, 7 December 2018
Estelle Jones, Communications Officer
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