The HIV Futures Survey was first conducted in July 1997 and drew together the largest sample of PLWHA to have been recruited in Australia. The 925 respondents represent over eight percent of the current population of PLWHA in Australia. Importantly, the survey went beyond the more accessible population of gay men in metropolitan Sydney and Melbourne and included sizeable numbers of women, heterosexual men, and people outside these two cities. The survey had six major content areas: health and treatments, sex and relationships, accommodation, employment, community involvement and finances.

For the first time it was possible to examine Australian trends among a large sample of PLWHA on not only health and treatment issues, but also important non-clinical issues. Many of the findings of the study confirmed what those in the community and clinical sectors had long suspected. Many HIV positive people were found to have difficulty meeting the costs of living (including such basics as food, clothing and utilities) and one third (32%) reported incomes below the poverty line. Over half the people surveyed were not in paid employment and nearly two thirds had stopped work at some time in the past for reasons related to HIV/AIDS. Half of the survey respondents were in a regular relationship and slightly more than half of these are in sero-nonconcorant relationships. Most of the PLWHA had disclosed their status to their partner and most partners (67%) were supportive.

The timing of the study, at what is now recognised as the high point of optimism about new anti-retroviral therapies, has provided insight into the experiences and attitudes of PLWHA to this change in the treatment environment at a critical social moment. Seventy-five percent of those surveyed were using anti-retroviral treatments and of these 85% were using three or more in combination. There was a cautious optimism about these treatments, with 59% of PLWHA believing that the new treatments had brought hope and better prospects, but 36% felt it was too soon to tell.

The size and sampling profile of HIV Futures has meant that comparisons can be made between different sub-population of PLWHA. This has resulted, for example in a report on HIV positive women, “Standing on Shifting Sands,” the heterosexual men’s report “A Different Epidemic” which will be launched in May and a forthcoming report on HIV positive IDU. There have also been reports for individual states (the NSW and South Australian reports are about to be reprinted and state reports for WA, Qld and Victoria will be released in May). On the academic side findings from the study have been presented at numerous conferences and in journal articles covering such topics as anti-viral uptake, use of complementary therapies, experiences of rural PLWHA, social determinates of health and the experiences of HIV community.

The HIV Futures Survey is also complemented by a series of qualitative studies. Two qualitative studies, “Work” and “Relationships” accompanied the first HIV Futures Survey. Futures II was accompanied by three interview-based studies exploring the process of returning to the workforce; the experience of HIV positive injecting drug users; and HIV and sexual practice.

The Living with HIV Program

The Australian Research Centre in Sex, Health and Society (ARCSHS) is funded by the Commonwealth Department of Health and Aged Care to conduct a national program of social research with regard to the particula r needs and experiences of HIV positive people and their carers.

The Living with HIV program undertakes a program of research that critically examines the experiences of PLWHA, at the levels of individual experience, social and community structures, broad socio-political structures and social meaning; encourages input from affected communities in the focus, design, interpretation and application of research conducted through the program; and disseminates the findings of research to the affected communities, community organisations, professional bodies, academic audiences, and government agencies in forms that reflect their particular needs. This includes the production of community reports, academic publications and conference presentations, briefing papers, editorial material and resources for use by affected communities.