From one virus to another: A reflection on 30 years of HIV social research
The 30th anniversary of the Centre for Social Research in Health occurs during the cresting wave of the global COVID-19 pandemic. It feels both timely and discomfiting to reflect on three decades of social research into an older pandemic – the HIV/AIDS epidemic. Timely because we have decades of knowledge about how people respond to viral threats to their health, but discomfiting because familiar traps need to be avoided as we adapt to living with another virus.
The Centre for Social Research in Health, initially named the National Centre in HIV Social Research, was formed in 1990. Its primary responsibility was to research the social dynamics of HIV, including the practices that people engaged in that were protective or put them at risk of infection, the ways in which people understood and responded to the threat of the virus, and the prevention strategies that people found acceptable and compatible with their everyday lives. The focus on social ‘practice’ rather than ‘behaviour’ became a defining feature of the Centre’s work on HIV, reminding us that behaviours deemed as important in public health research (e.g. condomless sex) are part of social practices that are meaningful to people (having sex, making love, dating, hooking up) (Kippax, 2017; Kippax et al., 2013; Race, 2014). Understanding the meaning of what people do and the contexts in which they do them remain critical elements of developing effective education, health promotion and prevention responses that resonate with people.
The Centre achieved this engagement with social practice in a variety of ways, which continues in its work today. Encouraged by its Director at the time, Susan Kippax, it appointed researchers from the social sciences, humanities and health disciplines to work together and challenge each other’s assumptions about how to do research, create knowledge and interpret findings (Kippax, 2017; Race, 2014). From its inception, Centre researchers worked closely with members of community organisations and affected communities, to ensure the needs and priorities of community members were reflected in every stage of the research process, from design to dissemination. Working with governments ensured our research both responded to and altered policy and practice in an ongoing debate about evidence, effectiveness and priorities. These productive relationships between colleagues, community partners and policymakers are one of the hallmarks of the HIV response in Australia, and one of the reasons working at the Centre is so satisfying.
In the absence of a vaccine or effective treatment, the early decades of HIV social research focused on how communities responded to the threat of HIV and developed practices that could sustain sex, intimacy and pleasure while mitigating risk (Kippax, Connell, et al., 1993; Kippax & Race, 2003). Gay men and sex workers adopted condom use in large numbers, and worked out a variety of ways to sustain sex in an epidemic, constructing what we still refer to today as ‘safe sex’ (Bates & Berg, 2014; Kippax, Connell, et al., 1993). People who used drugs and advocates who worked with them pushed for sterile injecting equipment to be made available to reduce the chance of transmission through shared equipment, despite threats of criminalisation and pervasive stigma (Madden & Wodak, 2014). The Centre was critical to documenting and understanding these shifts in Australia, through large scale, community-based survey research, in-depth qualitative studies and theoretical engagement with constructions of care, risk, responsibility, wellbeing and identity.
As the HIV epidemic turned into a long wave event in Australia, and it became clear that we would have to learn to live with the virus for decades rather than years, community responses evolved. It became clear through the Centre’s research that gay men, who remain Australia’s most HIV-affected population, were becoming less likely to use condoms with every sexual partner. This trend was observed in a number of countries with concentrated epidemics, and caused consternation in some quarters, particularly among those from a traditional public health perspective (Holt, 2014). The Centre and its partners resisted the urge to label this shift a failure or ‘relapse’ to risk, and instead investigated the change. The resultant research showed that many gay men, particularly those in relationships, were making use of the greater availability of HIV testing to assess the likelihood of transmission risk with their partners (Kippax, Crawford, et al., 1993). The decision by couples of the same HIV status to not use condoms with each other but to use them with casual partners, if they had them, was labelled ‘negotiated safety’. This practice was embraced by the Australian HIV sector as a reasoned, community-driven expansion of the safe sex repertoire, drawing on trust between partners, negotiation and regular access to testing. Negotiated safety was subsequently shown to be a highly effective way to prevent HIV transmission (Jin et al., 2009).
The experience with negotiated safety emphasised that social research needed to attend to creativity in community practice, particularly when there were shifts in technologies related to testing, prevention and care. It also reinforced the understanding that we should resist too rigid a view of what counts as safe or risky practice to avoid public health recommendations becoming seen as illegitimate, unacceptable or out of step with community norms.
In the late 1990s highly effective, combination HIV treatments became widely available, transforming HIV from a fatal infection to a chronic disease and promising to restore health and longevity to people living with HIV. The availability of treatment was a landmark moment in the global pandemic and shifted people’s perceptions of the threat of HIV. However, Centre researchers also identified a series of complications and challenges in engaging with treatment. Treatment combinations were not always easy or kind to people living with HIV, causing side effects, changes to body shape and conceptions of the self (Persson, 2004; Persson & Newman, 2006). The imperative to successfully adhere to treatment and achieve viral suppression could intensify feelings of responsibility among HIV-positive people (Race, 2001). These experiences showed that despite its life-saving capacity, treatment was not always straightforward and did not automatically translate into quality of life. This early treatment research underscored that we should always attend to what we are demanding of people when we offer something that biomedicine deems essential or beneficial, as its effects are rarely simple or uniform.
More recently, HIV treatment has become simpler and easier to take. Sustained treatment and viral suppression have been shown to have the profound additional benefit of eliminating the risk of onward transmission during sex (Cohen et al., 2011), again transforming what might be understood as ‘safe sex’. However, although there are signs of improvement, decades of HIV stigma and fear endure (Broady, Brener, Cama, et al., 2020; Broady, Brener, Hopwood, et al., 2020), and many community members remain cautious in relying on HIV treatment for prevention (MacGibbon et al., 2019). The refinement of treatment has resulted in ever higher levels of people living with HIV taking combination therapy. Yet some still struggle with treatment, because of competing life priorities, comorbidities, previous experiences of side effects, and concerns about being made more responsible for protecting others (Mao et al., 2018; Newman, de Wit, et al., 2015; Newman, Mao, et al., 2015). HIV-positive people on low incomes, taking multiple medicines or living in public housing may find it harder to adhere to treatment, underscoring that even in a high-income country like Australia, socioeconomic disparities can undercut biomedical advances (Siefried et al., 2017). Finding ways to reduce HIV stigma and attend to the most marginalised remain critical concerns.
In the last ten years, another profound shift in HIV prevention has taken place with the discovery that the regular use of antiretroviral drugs by HIV-negative people is highly effective in preventing HIV infection (Fonner et al., 2016). Known as pre-exposure prophylaxis or PrEP, its introduction has prompted a rapid reordering of prevention practices, with PrEP becoming more commonly used than condoms by Australian gay men in the space of a few years (Mao et al., 2020). PrEP has led to a substantial decline in HIV infections in Australia for the first time in over a decade, with users reporting relief from fear about HIV and enhanced sex lives (Grulich et al., 2018; Holt, Lea, et al., 2019; Philpot et al., 2020). These developments are deeply welcome, but it is perhaps not a surprise that such a rapid change in HIV prevention has also generated disruption and debate. The Centre’s research has been critical to identifying these challenges. Not everyone who appears to be a suitable candidate for PrEP wants to use it, either not feeling sufficiently at risk of HIV or citing concerns about relying on medication (Holt, Lea, et al., 2019; Holt et al., 2020; MacGibbon et al., 2019). Equity in access to PrEP has been identified as a key issue (Newman et al., 2019), with the initial wave of uptake concentrated among Australian-born gay men in inner city areas, and those with a higher degree of socioeconomic security (Grulich et al., 2018; Holt, Lea, et al., 2019). Debates about who should prescribe PrEP, and its effects on condom use and sexually transmitted infections have at times divided the field, between those who see these as manageable issues and those who anticipate future problems (Holt, Newman, et al., 2019; Smith et al., 2020). The Australian HIV sector has embraced PrEP, treatment as prevention and condoms as key pillars of a combination prevention approach, but it remains to be seen how affected communities will embed these strategies over time, leading to new norms, practices, identities and perceptions of responsible conduct.
The calamitous emergence and spread of COVID-19 this year reminds us of critical elements of the response to HIV and the need for engaged, reflexive social research (Lupton, 2020; MacGibbon & Smith, 2020). As people have been asked to adjust their lives to minimise transmission risk, communities have responded by finding creative ways to maintain practices that are important to them, like intimacy and closeness to others. Technology has played a critical role in mediating this change (Watson et al., 2020). Debates between experts about evidence are lively and contested, attempting to identify what we need to ask of communities and what the future of the pandemic will bring (Lancaster et al., 2020; Rhodes et al., 2020). My colleagues at the Centre for Social Research in Health and in the broader field are actively engaged with the communities we work with to understand and resolve these challenges. Based on our experience in HIV social research, I’m sure that whatever we ask of people at risk of and affected by COVID-19, we need to find sustainable ways to reduce risk and live with the virus. The most effective responses will be those which result from listening to communities and being willing to adjust public health recommendations, so they work with rather than against people’s lives.
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