Study Paper No. 5 INTRODUCTION The NCHSR and Community Involvement The Transitions from HIV to AIDS Project was a major study conducted by the National Centre for HIV Social Research (NCHSR) in Australia from late 1993 to early 1995. The study evolved from and was part of a broad program of research established by the Centre called the Living with HIV/AIDS research program. The focus of the program was to establish and maintain ongoing communication with and amongst people living with HIV/AIDS (hereafter PLWH/A) and their carers and develop and conduct social research which emerged from the identified needs of PLWH/A. At the National Centre in HIV Social Research, the principle of community participation is viewed as a critical factor in all stages of the development of the overall research program and the design and implementation of individual projects. This includes the very preliminary steps of identifying the subjects of most importance in the HIV/AIDS community, particularly those affecting people living with the virus and their carers. It is a fundamental tenet of the Centre's operations that the principal and most prolific source of wisdom on any HIV/AIDS issue with social implications is to be found in the community dealing first-hand with the problem. Several commentators have already noted the incredible impact that HIV/AIDS has had on the notion of community participation and empowerment in the whole field of public health1. Research Context AIDS in Australia The fifteen year history of AIDS in Australia has been characterised by a close working relationship between community-based organisations, government agencies and scientific and medical communities. Indeed, this collaboration has come to be known as "The Partnership" and has been perhaps the single most important factor in the comparative success of Australia's response to the epidemic. Of course, the concept of community participation is not unique to HIV/AIDS. Community participation in health policy, planning and services is a central theme in the current exploration of community development methods for the promotion of health. All these traits are symbolic of the shift to a "new public health", a movement for change precipitated by the radical demand of community participation in the period of conflict and change of the 1960s and early 1970s2. The origins of this demand include the concepts of self-management and participatory democracy advocated by the New Left; the growth of self-help groups; the peace and student movements; the emergence of environmental issues; the formation of consumer's associations; and the collectivism of the women's movement. The communities which have formed around HIV/AIDS have in many ways synthesised many of the elements of these movements and displayed a very energetic, forceful and articulate presence in the arena of public health. In this sense, the much-vaunted Partnership was as inevitable as it was essential3. Community pressure was brought to bear on as many decisions as possible in the early days of the epidemic in Australia and key forums and committees soon realised the value of inclusive procedures to facilitate genuine, effective dialogue. The gay community was particularly at the forefront of promoting a rapid response, as the epidemic's first wave in Australia particularly affected homosexually active men in Sydney and Melbourne. Gay men were also primarily responsible for establishing AIDS Councils, the peak community-based AIDS organisations, throughout Australia. AIDS Councils developed care and support groups for PLWH/A and their carers and initiated a national Peer Education Program, first funded in 1988 with a special grant from the Commonwealth Health Department. This followed recommendations arising from a national workshop in Sydney in 1987, which brought together program planners and social researchers with an interest in AIDS prevention amongst gay and bisexual men. More recently, Aboriginal communities in Australia have begun to adopt a similar philosophy of self-ownership in the area of health and HIV/AIDS education. The principles underlying this approach - that the workers have a practical knowledge of their culture; that they have a commitment to raising the health status of their community; that they have substantial knowledge of local health issues; that there is an in-depth understanding of the restrictions involved in dealing with problems in their community and finally that there exists a degree of credibility that visiting experts cannot achieve - all form the basis of HIV/AIDS prevention and care efforts in affected communities in Australia. These programs then were at the cutting edge of putting the Partnership into practice. They were also the basis from which HIV/AIDS social research emerged, grounded in the notion of community-based expertise. From the beginning of the epidemic, both formal and informal exchanges between community-based practitioners and academic researchers have been fundamental in guiding the direction of HIV/AIDS social research. Epidemiology As in a few northern European countries, AIDS in Australia not only began, but has remained very heavily concentrated among male homosexuals. The latest epidemiological figures show that homosexually-acquired infections account for over 80% of the total of c.18,000 notifications. The first cases of AIDS in Australia were reported in 1982-83. Then followed a rapid increase in the annual number of reported cases, but by the late 1980s the rate had begun to slow. Using the method of back projection, based on AIDS cases and the known rate of progression from HIV to AIDS, it is estimated that the annual incidence of new HIV infection peaked at about 3,000 in 1984 and then declined sharply to around 500 in 1990. As a consequence, the number of people progressing to AIDS increased for the ten years following the 1984 peak in HIV transmission but is now approaching a plateau. Assuming that rates of new HIV infection and progression to AIDS in people with HIV infection have remained constant in the recent past and will continue to do so, the number of new cases of AIDS each year will remain close to the current level for another decade, after which it will begin to decline. If infection rates rise substantially again, the annual number of new AIDS cases will also rise (after a lag of a few years) unless new treatments are shown to be more effective. Statistics At 30 June 1996, there were 6,877 cumulative cases of AIDS in Australia, and of these 4,962 had died. At the same date, the National HIV Database had recorded 19,873 cumulative diagnoses of HIV infection. Of this total number of HIV notifications, 80.3% reported male homosexual/bisexual contact as the known exposure category. Median ages at HIV and AIDS diagnoses have been in the low and high 30s respectively. Despite the trend towards younger age at HIV infection as the epidemic has progressed, HIV incidence has declined in all age groups since the mid-1980s, and dramatically so in the 24+ age groups. The majority of HIV infections in more recent years appear to be in the 17-24 age groups. Indeed, by 1992, AIDS had become the third greatest cause of death among people aged 25-44 years in Australia; among men in New South Wales, Australia's most populous state, it had become the second greatest cause. The geographical impact of HIV infection in Australia has largely been a reflection of the predominant mode of transmission - sexual contact between men. Per capita rates of HIV and AIDS diagnoses have been substantially higher in New South Wales, and particularly in those parts of Sydney that are recognised as focal points for the gay community. In general, the capital cities have experienced higher per capita rates of HIV and AIDS than regional Australia. The vast majority of diagnosed cases of HIV infection in Australia for which the route of infection was reported, has been in men who became infected as a result of sexual contact between men. The number of diagnosed cases of HIV infection associated with sexual contact between men and women, the injection of drugs, or medical procedures have been relatively small in comparison. In summary, the recent evaluation of Australia's second National HIV/AIDS Strategy 1993-94 to 1995-96 considered that the epidemic in Australia is best understood as several separate - current and potential - epidemics4. Firstly, there is the epidemic continuing among homosexually active men. By the end of 1994, 90 per cent of cumulative AIDS cases among adults where exposure category was reported had occurred in men with a history of homosexual contact. Secondly, there is the epidemic emerging among indigenous Aboriginal and Torres Strait Islander (ATSI) people. Although there are fewer than 100 reported cases of HIV diagnosis among ATSI people, it appears that, in contrast with the overall Australian HIV epidemic, the rate of diagnosis among ATSI people is increasing. Thirdly, there are the epidemics which, to all intents and purposes, have been prevented, especially amongst people who inject drugs, prison inmates and sex workers. Endnotes 1. In particular, see Deborah Lupton (1995) The Imperative of Health: Public Health and the Regulated Body, London: Sage. 2. See Jonathan Mann (1995) 'Human Rights and the New Public Health' in Health & Human Rights, 1:3, 1-5. 3. See Neal Blewett (1996) 'Valuing the Past...Investing in the Future', Australian and New Zealand Journal of Public Health, 20:4, 343-344 4. Feacham, Richard (1995) Valuing the Past... Investing in the Future: Evaluation of the National AIDS Strategy 1993-94 to 1995-96, Canberra: Commonwealth Department of Human Services and Health.
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