Transforming risk, sex and the self: Making new HIV futuresBrett
By Dean Murphy, Kane Race, Kiran Pienaar, and Toby Lea
In 2017 we started a research project investigating drug consumption among sexual and gender minorities. In particular, we were interested in the ways in which people with LGBTQ experience consume drugs to enhance or transform their experience of sex, sexuality, and/or gender. As part of the project, which we called Chemical Practices, we aimed to map the range of substances that people consumed, and to explore the effects that people were seeking – as well as what they actually experienced – as a result of their consumption of these substances. We were also interested in what practices people engaged in – either individually or collectively – to maximise the effects that they were seeking, and to minimise any potential negative effects.
An important element in the project’s design was a commitment to not predetermine which substances were included in the scope of the study, but rather to allow participants to provide their own list, and then invite them to describe the ways in which these substances enhanced or transformed their experience of sex, sexuality, or gender. In the interview component of the study, we did this by asking participants to complete a mapping exercise [see example below] in which they listed the substances they used according to frequency, that is, from things consumed every day (inner circle) to things previously – but no longer – consumed. We then asked them to choose the substances that were the most closely associated with their experience of sex, sexuality or gender, and to talk about these substances in more detail, including what these substances ‘do’. We hoped this approach would open up possibilities for thinking about a wide range of drug effects that included, but also extended beyond, illicit drugs. Below is an example of a map generated by one of our participants, Dalston (44 years).
Example of mapping exercise
We then used the insights from these interviews to develop a survey, in which we explored some of the ideas that emerged across a broader sample of participants, as well as looking at the relationship between demographics, experiences, and patterns of drug consumption.
This approach might appear, at first, to be an unusual one when thinking about pharmaceuticals, including antiretrovirals. After all, aren’t the effects of these drugs investigated and painstakingly documented during clinical trials? Well, yes, they are, of course, but we also know that myriad other effects have already been attributed to antiretrovirals over (at least) the past two decades. These consequences have included a whole stable of ‘optimisms’ – such as treatments optimism and HIV optimism (which refer to decreased concern about HIV transmission, acquisition, and severity) [1-4] – as well as the behavioural outcomes (for example, condomless sex, or PrEP adherence) and biological outcomes (for example, sexually transmissible infections) that have been variously understood to be mediated by these attitudinal changes. So, in fact our approach could be said to demonstrate more continuity than change in this regard. Also, this approach was in keeping with our theoretical influences which hold that the effects of drugs – including pharmaceuticals – are not attributable exclusively to the properties of the chemical entities but rather these effects are brought into being and changed in their encounters i.e. in relation to other actors, contexts, practices. As part of this process, we asked people to describe the effects of HIV antiretrovirals.
Our focus on what antiretrovirals do, that is, their effects also deliberately draws attention to the notion of ‘effectiveness’, which is a more familiar line of inquiry in relation to pharmaceuticals. Effectiveness is understood to refer to an intervention’s performance under ‘real-world’ conditions (compared to ‘efficacy’, which is its performance under ideal and controlled circumstances, that is, in a clinical trial). Although we don’t have the opportunity to discuss it in this piece, there is an existing body of literature on Randomised Controlled Trials (RCTs), which analyses the distinction between efficacy and effectiveness, and how these effects are brought into being. This literature also provides a critique of RCTs themselves, which as Marsha Rosengarten notes, are specifically designed in a way so that ‘only a delimited set of effects are of concern’ . So, as this analysis suggests, it is to a certain extent already widely accepted that the effects of drugs extend way beyond their therapeutic or prophylactic performance.
As readers of HIV Australia would be well aware, over the last decade an increasing number of people have embraced antiretroviral based prevention – either as Pre-Exposure Prophylaxis (PrEP) or early initiation of antiretroviral therapy. The use of PrEP among urban gay, bisexual and queer (GBQ) men in Australia has dramatically increased over recent years, from negligible levels (in 2011) to over one third of all HIV-negative men in 2019 . Australia’s particularly enthusiastic uptake of PrEP, which is higher than anywhere else , and of antiretroviral therapy, has been facilitated by policy and regulatory changes, as well as promotion by community-based HIV and LGBTQ health organisations.
Although the ‘optimism’ effects of antiretrovirals from the late 1990s through to at least the end of the first decade of the 2000s, were generally framed as problematic in research – for example via ‘risk compensation’ , and the diversion of antiretrovirals into party packs of crystal meth, Truvada and Viagra, dubbed ‘MTV’ [9, 10] – there has been a shift in more recent times. For example, some studies have noted the role of antiretrovirals in ‘enhancing sex’ , or reducing ‘HIV anxiety’ . Also, recent clinical research has identified, albeit implicitly, the sexualised nature of antiretrovirals, in discussions of different dosing strategies for PrEP (‘event-based dosing’ or ‘on-demand’ strategies) [13, 14].
So, what happened when we asked our participants to describe what PrEP does – or more generally, what antiretrovirals do – without taking the performance of these drugs as given, or placing limits on the kinds of effects they could attribute to them? Their responses covered the two following areas.
Changed understandings of risk and HIV
Most participants cited the prevention of HIV transmission (in the absence of condoms) as an effect of antiretrovirals. This response may seem somewhat unsurprising, given on the one hand, PrEP is explicitly consumed for this purpose, and on the other hand, policies related to the initiation of antiretroviral therapy for PLHIV are increasingly also framed in terms of prevention of onward transmission of the virus. However, our analysis found that this effect was actually broader than prevention alone, and could be described instead as changing understandings of risk or even of HIV itself. Also, there were some differences between HIV-positive and HIV-negative participants in terms of the emphasis they gave to these effects. For HIV-negative men who were taking antiretrovirals as PrEP, the effects on HIV and risk were foregrounded. As Eli (27 years) noted, taking antiretrovirals, ‘means that you don’t get HIV if you get exposed to it’. Participants living with HIV, however, tended to describe changed HIV risk in slightly different ways, and to contextualise this effect in relation to therapy. As Julian (33 years) said: ‘It has like, I guess, a dual effect. It protects myself and it protects my sex partners.’
This prevention of onward transmission, referred to as ‘treatment as prevention’ (TasP) corresponds well with current narratives of HIV (for example, ‘End of AIDS’) . Interestingly, most HIV-positive participants, however, were less likely than Julian to attribute these therapeutic and prophylactic effects in such an equal way. They were more likely to talk about ‘TasP’ as a side-effect of treatment, and antiretrovirals were less sexualised in their accounts – although those more recently diagnosed seemed more likely to prioritise prevention of transmission. Both HIV-negative and HIV-positive participants, however, identified another way in which antiretrovirals changed HIV risk – by increasing the range and number of potential sex partners (i.e. no longer as bodies that were either at risk, or posed risk). Sterling (52 years), for example, who was HIV negative, noted that this ‘increases the pool’, and similarly, Van (66 years), who was HIV positive, talked about not having ‘to sort of just trawl around in a little fishpond now; it’s a bigger sea’.
Interestingly, however, these preventive effects were not necessarily taken for granted by consumers. In fact, participants described such effects in terms of embodied experience and as a result of learning or experimentation. Avery (31 years), for example, described the process of developing confidence in the ability of antiretrovirals to prevent HIV as one of trial and error, in which he conducted small experiments (for example, ‘a couple of perhaps more higher risk experiences’), and these experiments were then scaled up over time (‘I really put it to the test, you know, those few months’). Confirmation of the results of this testing was provided via the clinical infrastructure through which PrEP was being rolled out (i.e. the quarterly HIV testing). So, in a sense, Avery’s practice of trialling and testing the effects of antiretrovirals is like an ad hoc personal trial (or implementation study). Other confirmatory mechanisms included:
- clinical staff who provided information about other trial results;
- peers who were also taking antiretrovirals as PrEP; and
- social media groups/pages on which effects were discussed and debated.
Our study design also encouraged participants to think in more expansive terms about how antiretrovirals had enhanced or transformed their experience of sex, sexuality, or gender, which meant asking them to explicitly think beyond risk and HIV. There were three other, interrelated, themes. First, several participants attributed antiretrovirals, as providing greater connection to sexual partners. This connection was not just about increased physical sensations or pleasure – although these effects were also noted – derived from sex without the barrier of condoms. They also invoked other kinds of intimacy. As Avery (31 years) reflected: ‘I think I’ve probably had more connected sex now. […] I’ve had a lot better connections sexually since taking PrEP.’ Notably, this connection was also possible between partners of different HIV status.
Another effect was related to having a sense of control in sexual encounters. For Kylan (25 years), antiretrovirals made him feel ‘safer’ in receptive anal sex ‘because a lot of guys don’t wear condoms’. Some other participants talked about antiretrovirals – and more specifically, as PrEP – providing a sense of control in relation to others, and even themselves, in sex and drug-use encounters. Notably, this feeling of control enabled participants to engage in practices they had previously avoided, or not even considered. And control was also described by some participants in a more general or diffuse sense, that is, in a way that they had not felt previously.
And finally, many participants also talked about antiretrovirals reducing anxiety. And although we might otherwise hesitate to use the term ‘anxiety’, it was the word often used by participants themselves in reference to sexual encounters and their sexuality. As Dudley (38 years) reflected, he wasn’t consciously aware of his fears about sex until starting PrEP: ‘My anxiety around HIV specifically has significantly decreased, which is funny because I never knew I was that anxious until I started using PrEP’. Our study, therefore, allowed some insights into these changes in experiences of sex and sexuality. However, this reduction in worry or concern about HIV does not necessarily equate with ‘pleasure’, in the sense that pleasure is not the corollary of reduced anxiety. Instead, it seemed to allow a different engagement with sex. And while pleasure was certainly achieved, there was a focus in participants’ accounts of allowing themselves to also be more present, or in the moment, compared to sexual experiences in the past in which condomless sex was associated with deferred emotions. As Dane (30 years) reflected, after starting PrEP he could engage in sexual adventures that he found exciting and transgressive and he ‘didn’t have to have that emotional freak out afterwards’.
In addition to the three effects described above, what was also interesting in our interviews, and also to some extent in our survey, was the way in which participants attributed a range of different gendered effects to antiretrovirals, and in particular when taking these drugs as PrEP. On the one hand, participants frequently talked about – and valued – being ‘uninhibited’ – a quality coded as ‘masculine’. In this respect, they appreciated the opportunities that PrEP afforded for participating in a range of different sex scenes and practices, as well as spontaneous or anonymous encounters that involved minimal communication or negotiation, and were unencumbered by the ‘unnatural’ intrusion of condoms. However, as mentioned above antiretrovirals are also associated with connection and intimacy, conventionally read as ‘feminine’ phenomena. Elsewhere in our study, participants attributed highly gendered effects to different substances, and other research has also documented, for example, the way in which young women and men differently described the effects of GHB . However, it is interesting that in the case of pharmaceuticals such as antiretrovirals, certain gendered effects are also experienced by consumers, in the context of sexual encounters.
Participants – especially survey respondents – were somewhat reticent to attribute pleasure or other transformations directly to antiretrovirals, despite the opportunity to think in this way. Using a scale (out of 100) survey respondents on average rated PrEP at 89 in terms of ‘staying well/healthy’, followed by ‘reducing stress’ (60), ‘therapy (i.e., treatment, remedy, relief)’ (58), ‘normalisation’ (53), ‘making connections’ (50), ‘pleasure’ (46), and ‘enhancement’ (30). So, it seems that the biomedical framing of antiretrovirals (even as PrEP) is quite difficult to shake off, and is not necessarily problematic for these participants.
Our reflections suggest that while consumption of antiretrovirals enhances or transforms sexual experience, it does so in a manner that seems to mix therapeutic/prophylactic logics and other effects. Antiretrovirals have effects that exceed beyond those that are normally attributed to them. Our contribution, therefore, has been to broaden people’s thinking about what antiretrovirals do, that is, their effects (which the notion of ‘effectiveness’ deliberately draws attention to), as well as to locate antiretrovirals alongside other substances people consume in various ways in their everyday lives to enhance and transform their embodied experience.
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Dean is a Research Fellow at the Kirby Institute, University of New South Wales & Alfred Health. Dean’s work focuses on the meanings of drug consumption among people with LGBTQ experience, understandings of HIV biomedical prevention technologies, ontologies of HIV diagnosis, experiences of sexual health and well being, sexuality, and kinship. His book, Gay Men Pursuing Parenthood Through Surrogacy: Reconfiguring Kinship, was published in 2015.
Kane Race is a Professor of Gender and Cultural Studies at the University of Sydney. He was one of a number of researchers based at the National Centre in HIV Research whose research into gay men’s use of antiretroviral therapies and viral load testing led to the recognition of risk reduction strategies such as strategic positioning in the HIV sector. He has written widely on gay men’s experiences of medical and illicit drugs and is the author of Pleasure Consuming Medicine: the queer politics of drugs (2009) and The Gay Science: intimate experiments with HIV (2018).
Kiran is a Lecturer in Sociology at Deakin University. Her research explores connections between health, gender, sexuality and the body, with a particular interest in drug consumption and sexual cultures. She has published on topics related to drugs, addiction and the self; the biopolitics of disease; and drug experiences in LGBTQ cultures. She is the author of Politics in the Making of HIV/AIDS in South Africa (2016).
Dr Toby Lea is an applied social health researcher affiliated with the Centre for Social Research in Health, UNSW Sydney and the Australian Research Centre in Sex, Health and Society (ARCSHS), La Trobe University. His current research is focused on two areas: the use of psychedelics as self-managed therapies for mental health; and, substance use, harm reduction and treatment among lesbian, gay, bisexual, transgender and queer (LGBTQ) people.