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Reflections of a social scientist on doing HIV social research
Susan Kippax, NCHSR, UNSW, Sydney
Presented at the IHHR Social Reception
July 16, 2007

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Thank you to the HHR initiative especially Daniel Tarantola for giving me the opportunity to speak this evening.

My talk describes one aspect of the history of HIV prevention in Australia and places it in the context of current global debates about HIV/AIDS. I hope the focus I have chosen will illustrate - at least in part - why Australia's approach to HIV prevention has been and continues to be a success. My talk includes my reflections on my own research and the research of other social scientists in Australia - with special reference to the National Centre in HIV Social Research (NCHSR) and the people with whom we continue to work - governments, non-government organisations and communities at risk of HIV.

Devising effective HIV prevention, treatment and care programs requires the ability to understand and harness people's ways of actively striving to deal with HIV in their everyday lives. It involves encouraging and enabling people to transform their sexual lives; it involves treating, caring for and supporting those with HIV and those affected by HIV; and it involves mitigating the impact of HIV - the social, the political and the economic impacts - especially in those regions and countries hardest hit by HIV and AIDS.

Here I am going to talk about the work I know best --- that focused on HIV prevention in Australia. What sort of HIV-prevention education programs work best? What can researchers do to enable people to transform their sexual lives?

In order to address this question I first briefly explore some of the models underlying so called prevention 'interventions' and then turn to my own work and that of the NCHSR to illustrate what I have learnt from 23 years working as an HIV social researcher.

Background

There is no vaccine for preventing HIV and there is no cure. However in 1996 HIV treatments (in the form of antiretroviral therapy, ART, which delay the move from HIV to AIDS to death) were developed. So there is an effective treatment.

There are currently approximately 40,000,000 people living with HIV. Each year the prevalence increases as new infections outstrip the number of deaths. In 2005/6 it was estimated that there were around 4.3 million new infections and around 2.8 million deaths. So last year there were an additional 1.5 million people living with HIV and while the global incidence rate is believed to have peaked - at least in some countries (Laurence 2006) - the absolute number of new HIV infections is growing (UNAIDS 2006).

Part of the problem is that prevention has faltered, it has fallen off the agendas of both governments and donors. One of the reasons for the decline in prevention is the immediacy of the need to treat those with HIV. Anti-retroviral drugs are expensive and many governments are now spending a very, very large portion (if not all) of their AIDS budget on treating those who are ill. So although the HIV budget has increased exponentially since 2001, there are fewer and fewer dollars being spent on prevention - although there has recently been an increase in funding associated with the turn to 'biomedical' prevention technologies.

There is a growing and, I believe, an unacknowledged tension between prevention and treatment. Funding is finite. So although there is a great deal of rhetoric about the importance of both prevention and treatment, and some attempts - largely misguided - to link prevention to treatment, prevention has stalled in many countries.

It is not only that the prevention dollar has shrunk . . . but coupled with the shrinking prevention dollar is a growing belief in some quarters that prevention (at least what is usually referred to as behavioural prevention) has failed - that it does not work. This has been coupled in recent times with a move to invest in biomedical prevention technologies - circumcision, pre-exposure prophylaxis, microbicides, . . . .

In other quarters, the belief is not that prevention has failed but rather that governments and donors have failed prevention. I am of the latter view and argue that prevention not only can but has and does work if a 'social' public health model is used - as has been the case in Australia - and if prevention programmes are supported and properly resourced.

My argument is that prevention is 'failing' because prevention programs and policies are currently informed by a 'modern' public health, a public health that is informed by a neo-liberal doctrine - a doctrine focused on notions of agency and individual responsibility and the personal blame, stigma and discrimination that inevitably accompany such a doctrine.

Let me illustrate by describing - at least in part - the HIV response in Australia. What is central to the Australian response is a partnership - between affected communities (gay men, injecting drug users, sex workers, . . . ), the non-government organisations funded by governments to advocate for, support and educate those communities, governments, researchers, and clinicians and other public health professionals. And the partnership - which is a genuine one in which each partner has a voice - is of a very special sort. I describe here the place / the position of social researchers within that partnership - and what we did and what we continue to do . . .

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