Abstract
This paper explores experiences of PrEP, a HIV-prevention intervention, among bugchasers, gay men who eroticize HIV. While PrEP has been hailed as a “game changer” in HIV-prevention, little attention has been paid to why and how some people may discontinue it in the face of HIV risk, such as bugchasers do. This paper relies on interview data with bugchasers themselves to discuss the process of discontinuation and its effects. The paper argues that, for these men, discontinuation is a fluid, complex, and sometimes contradictory process. It also describes how participants perceived themselves as being at different stages of discontinuation. The paper also analyzes how these men see PrEP as a barrier to intimacy, risk, and a tool to negotiate their desires and identity: through discontinuing PrEP, these men are able to reflect on and build their identities as bugchasers.
PrEP, the acronym for pre-exposure prophylaxis refers to the use of antiretroviral medication to prevent HIV infection in those at risk of it. Since the US Food and Drug Administration (FDA) approved it in 2012, PrEP has been hailed as a “game changer” in HIV prevention and has become a “hot topic” in debates around sexuality (Brady, 2015; Rhoden-Paul, 2019). While PrEP is available for a range of people, these debates have mostly crystallized around gay men’s use of it. PrEP, which has become the latest element in the toolbox of HIV prevention, is believed to have played a significant role in the 29% decrease in new infections among gay and bisexual men in London in 2016 (Brown et al., 2017). However, the promise of PrEP has continually been dampened by poor availability, relatively low uptake among key at-risk populations, and poor adherence. As PrEP becomes more available to more people worldwide, it is important to understand that it “is a dynamic phenomenon that is more than just a pharmacologic intervention—that is, getting PrEP ‘to work’ is more complicated than simply ‘getting drugs into bodies’” (Auerbach and Hoppe, 2015: n.p.). Research is needed about how people make sense of PrEP and what interventions around PrEP use are effective. In particular, it is necessary—and currently under studied—to explore why and how some people stop taking PrEP while they engage in practices that put them at enhanced risk of HIV.
This paper develops this area of research by exploring some men’s experiences of discontinuing PrEP and how this process may contribute to negotiating and building their desires and (sexual) identity. To do so, I analyze three interviews with “bugchasers,” gay men who eroticize HIV. 1 While bugchasers eroticize the virus, they are also ambivalent about their desire for actual infection. These three men, Scott, Milo, and Luke, 2 understand PrEP differently and evidence different stages and experiences of discontinuation: for Scott, PrEP is a barrier to intimacy akin to “chemical condoms,” for Milo, PrEP and its discontinuation are a way of experimenting with his desires (“training wheels”) and, for Luke, a tool to define his own identity. While this is a niche sample, these men’s experiences provide an illustrative vignette of how PrEP discontinuation can support people’s negotiation of their desires and identities within a practice so far ignored by PrEP research.
First, this paper provides a summary of PrEP. In particular, I review current research about users’ meanings for PrEP, barriers to uptake, and challenges to adherence. Then, I move to considering the importance and complexity that underlies PrEP discontinuation. Second, this paper overviews the figure of the bugchaser and the reasons why these men eroticize HIV and risk-taking. Third, I discuss the methodology. Fourth, the stories of Scott, Milo, and Luke are analyzed: Scott has discontinued PrEP and sees it as a barrier to intimacy, Milo experiments with stopping PrEP as a way of negotiating his desires, and Luke uses PrEP to negotiate his bugchaser identity. Finally, I consider the limitations of these findings and further explore how PrEP discontinuation is fluid, complex, and related to desires and identity.
What is PrEP?
PrEP is an HIV-prevention strategy that uses antiretroviral drugs (also used in the treatment of HIV infection) to protect HIV negative people from infection (Peabody and Nutland, 2018). PrEP does not prevent any sexually transmitted infection (STI) other than HIV, and so it is frequently combined with other risk-reduction techniques (such as condoms, regular STI testing, etc.). It consists of a single-pill 3 that may be taken daily or around particularly high-risk sexual encounters (“on demand” dosing). PrEP may be used for shorter or longer periods during which there is an enhanced risk of HIV, these go from days to years. A large number of trials have proven that PrEP is highly efficacious 4 in preventing HIV but only if taken as prescribed (Fonner et al., 2016; McCormack et al., 2016; Molina et al., 2015). The availability of PrEP is inconsistent across the world, although the three men considered here all had similar access to it (see methodology).
PrEP is not solely a biomedical device, but also part of a larger chain of medical and technological interventions in sexual health, including condoms, PEP, TasP, and undetectability 5 (Auerbach and Hoppe, 2015: n.p.). As part of this chain, PrEP has mobilized pre-exiting cultural debates about sexuality and has generated a groundswell in the gay community. Dean (2015) goes as far as to suggest that “condom free sex is mediated by Truvada even when the participants are not on it, because the drug has crystallized as a mediating idea about what worry-free sex between men in the 21st century might be” (229). In a similar tone, Di Feliciantonio (2017) suggests that PrEP may be a tool for “new collective political possibilities” centered around the re-appropriation of sex outside the medical models of HIV transmission for gay men.
PrEP has generated debates around promiscuity and condomless sex. Discourses of “slut shaming” that had been previously attached to other prophylactics have resurfaced with PrEP, particularly around the image of the “Truvada Whore,” representing gay men whose use of PrEP is said to correspond to promiscuity and irresponsibility (Myers and Sepkowitz, 2013; Spieldenner, 2016). The public debates that took place around the views of PrEP and the need for its provision have been termed by Belluz as “Truvada Wars” (Belluz, 2014). These wars have also been portrayed in the media: Jaspal and Nerlich (2017) argue that mainstream media constructed a rigid binary between describing PrEP as a “revolutionary tool” and as a “risky biomedical intervention” with high uncertainty and likely to be used as a lifestyle drug. Other analyses suggest that newspaper reports on PrEP in the UK developed two narratives: one about citizen responsibility and one about the public-health need for the drug, that changed and shifted over time (Young et al., 2020).
Research has found PrEP to be effective not only in preventing HIV but also in alleviating anxieties and fears about the potential risk of HIV infection which, in turn, enhances interpersonal and sexual relationships (Gamarel and Golub, 2015; Jaspal and Daramilas, 2016). In line with this, Brooks et al. (2011) found that people were motivated to take PrEP because they saw it as ameliorating their fears about HIV. However, despite these positive results and its high effectivity, uptake of PrEP has been low among key at-risk populations, groups that remain at higher risk for HIV because of a number of factors (including the status of partners, prevalence of HIV in their communities, etc.). Research suggests that key barriers for uptake are: concerns about being stigmatized as reckless or promiscuous, concerns about side effects, cost, lack of awareness about PrEP and its effectivity, and a lack of access to expert sources of information or expert medical professionals (Brooks et al., 2011; Grant et al., 2014; Hammack et al., 2019; Jaspal and Daramilas, 2016; Marcus et al., 2016). Other barriers such as access to healthcare more generally, able-bodiedness, etc. also play significant roles in these exclusion processes.
PrEP adherence and discontinuation
As mentioned above, PrEP has been found to be highly efficacious in preventing HIV if taken appropriately (Haberer et al., 2015). In fact, the “real world” effectiveness of PrEP relies on adherence. For example, the large-scale iPrEx trial—which measured the effect of PrEP among men who have sex with men and transgender women—saw a 92% reduction in the relative risk of HIV infection in participants who adhered to PrEP, but less than half that in those who did not (Grant et al., 2010). Poor adherence across trials has been inconsistently linked to young age, use of intravenous drugs, and personal preference (Glidden et al., 2016; Ryan et al., 2019). In the case of PrEP, however, adherence “is complex and must be understood within the context of variable risk for HIV infection and the use of other HIV prevention methods” (Haberer et al., 2015: n.p.).
Unlike medication for HIV, which is taken for the rest of a person’s life after diagnosis, PrEP is only advised during “seasons of risk,” periods of heightened HIV risk. Thus, PrEP may be taken only around particular sexual encounters (“on demand” or “intermittent”) or may be taken daily for a period of time (weeks, months, or years). While this possibility is useful because sexual risk is not permanent but “fluctuates between periods of high and low HIV risk [due to] various personal and psychological factors” (Carlo Hojilla et al., 2016: 6) the fact that people may take it every day or intermittently makes it difficult to determine what adherence and discontinuation are. Haberer et al. (2015) suggest the idea of “prevention-effective” adherence: full daily adherence may not be necessary or desirable, since HIV risk is not permanent and other prevention tools may be used (such as condoms). At the same time, discontinuation has been measured in a number of ways, such as disengagement from services or not seeking drug refills for over 210 days (Ryan et al., 2019). This paper uses the term “discontinuation” to refer to participant’s active choice to stop taking PrEP (as opposed to reducing the number of doses) temporary or permanently.
As PrEP users move in and out of “seasons of risk,” they want to adapt their PrEP use to these and seek “guidance on how to start and stop PrEP” (Koester et al., 2014: 7). However, most available clinical guidelines emphasize the significance of starting PrEP—as a process requiring blood screenings, counseling, and HIV and STI screenings—but omit such detailed information about discontinuing it. For example, the World Health Organization Implementation Tools for PrEP (World Health Organisation, 2017a, 2017b) offer a multitude of templates and guides for clinicians advising patients on starting PrEP, but their only comment on discontinuation is that patients should wait 28 days after their last potential exposure to HIV. Similarly, the guidelines for PrEP by the British HIV Association only discuss discontinuation as an option for patients no longer at risk or who are not adherent (Brady et al., 2019). While these documents only focus on the possibility of discontinuing PrEP when no longer at risk, large-scale trials have determined that a significant number of participants may discontinue PrEP while remaining at risk of HIV. I will consider two examples here. Grant et al. discuss the iPrEx trial: Sustained engagement is a significant challenge for PrEP services. [. . .] Disengagement from PrEP services was substantial and infection rates during gaps in PrEP use were high. Among those who stopped PrEP, disengagement typically occurred early after a brief period of experimentation with PrEP. (Grant et al., 2014: 8)
This suggest three things: first, that discontinuation is a major issue for PrEP delivery. Second, that significant numbers of participants who discontinued did so while at risk for HIV, as the high rates of infection during the “gaps” evidence. And, third, that discontinuation is not necessarily permanent, but that PrEP users may choose to “take breaks” off PrEP. This is further detailed by Ryan et al. (2019) in their discussion of the PrEPX study, a large population-level demonstration study for PrEP that took place in Victoria, Australia, between 2016 and 2018. The team found that 25% of the participants discontinued PrEP. Of these, 22% recommenced it at a later point but 78% did not. Interestingly, the research also found that participants’ rate of STIs other than HIV was similar before and after discontinuation, meaning that participants who discontinued PrEP did not necessarily change their sexual practices to account for the lack of protection from HIV afforded by PrEP once they stop taking it.
All this research suggests that a significant number of people who discontinue PrEP do so while still at risk of HIV, a situation not considered by existing guidelines. At the same time, there is little information about the processes of discontinuation and how PrEP users may negotiate these. This article explores the case of bugchasing to explore these complexities around PrEP use. Bugchasing is an effective inroad into these debates because bugchasers are men who eroticize HIV and thus may provide particularly clear examples of how discontinuing PrEP (while remaining aware of their risk of contracting HIV) may help to negotiate desires and build identities.
What is bugchasing?
This article is part of a larger project examining the experiences of bugchasers, their use of PrEP and of the internet. Bugchasers are gay men who eroticise HIV. Far from a fixed identity position, this label stands for a complex variety of affects, experiences, and practices: some men actually seek HIV and engage in a multitude of high-risk sexual encounters to be infected, whereas others fantasize about infection but also wish to remain HIV negative, for example by using PrEP. While bugchasing is eminently a gay practice (see footnote 1), it is varied in age and exists in countries around the global north. Bugchasing is statistically rare and taboo, and bugchasers have found ample spaces in the internet where to meet partners, exchange information and pornography, or obtain community support. There is a lack of ethnographic detail on bugchasing, with just a handful of quality work on it, such as Dean’s (2009) Unlimited Intimacy and Gauthier and Forsyth (1999). To date, this is the second piece of research examining bugchasers’ views and use of PrEP (see García-Iglesias, 2020c).
Before exploring bugchasers’ perceptions of PrEP, it is worth considering some of the reasons for the eroticizing of HIV. Given the variety of experiences and demographics encompassed by bugchasing, no single factor can be said to “cause” bugchasing. Rather, these are potential contextual elements to bugchasing. Some researchers argue that bugchasing and barebacking—the different but connected eroticizing of condomless anal intercourse among gay men—are a response to the imposition of condoms and the ever-present fear of HIV (Crossley, 2002, 2004). Thus, bugchasers would be aiming to foreclose the anxieties generated by the uncertainty of potential infection to “get on with the business of living out their lives in a more uninhibited fashion” (Gauthier and Forsyth, 1999: 93). Bugchasing may also be a response to feelings of loneliness on the part of HIV negative people as their friends and lovers contracted HIV. In this way, HIV would be seen as a way of accessing a community of HIV positive individuals, a sort of viral brotherhood (Dean, 2009). In fact, the idea of “viral intimacy” and membership will be key to understanding Scott’s story below.
Particularly interesting for this paper are the discussions of bugchasing and risk-taking. Gauthier and Forsyth suggest that bugchasers may perceive themselves as “holy fighters” of “gayness” (95), with HIV being a sort of battle wound (Dean, 2009: 52) in a quest for the ultimate gay identity (Morris and Paasonen, 2014). This argument is picked up by Grov and Parsons (2006), who suggest that bugchasing may be perceived as a form of arousing risk-seeking in a risk-averse society. Dawson et al. (2005) go further to suggest that it is the act of seeking HIV itself (regardless of whether the virus is contracted or not) that is arousing, a line also endorsed by Dean (2009) when he argues that it is bugchasers’ lack of fear of infection that endows them with hypermasculinity (as a response to society’s feminization of anal sexuality).
What is key to thinking about bugchasing and PrEP is that the eroticizing of HIV and its prevention are not mutually exclusive. Bugchasing is varied: some men enjoy the fantasy with little intention of carrying it out in “real life,” others seek to be infected by any means. Most frequently, men move fluidly in between these extremes, sometimes being aroused by the thought of it, sometimes seeking to prevent it for fear of the long-term complications of infection (García-Iglesias, 2020a). PrEP appears as an effective tool for men to negotiate these fluid movements because, unlike the condom, it is invisible and, thus, allows men to engage in the “fantasy” of bugchasing while having sex with others if they so wish.
Methodology
This paper focuses on three participant stories: Scott, Milo, and Luke. These three stories were selected out of the twenty-two that compose an ethnographic exploration of bugchasing online and offline (García-Iglesias, 2020d). While twelve participants had experiences of PrEP, the three stories considered here were selected because they represent different affects toward PrEP and different stages of PrEP discontinuation, while also being particularly illustrative of the processes of meaning making and desire negotiation that underpin PrEP use. These three participants were in Australia, UK and France: while availability across countries and regions is inconsistent, all three participants all had access to PrEP at no cost through government-subsidized programs that also included routine testing for HIV and STIs. In these particular three cases, neither access nor retention into care posed challenges to participants. All participants were recruited through a research Twitter account and labeled themselves as “bugchasers” in one way or another. Participants were given Information Sheets and Consent Forms in line with university guidelines.
Give the rarity of bugchasing, geographic dispersal of participants, and intimate nature of the topics, interviews were conducted via Skype. Interviews were in-depth and lightly structured with a series of themes to cover but open to participants’ interests. The use of Skype interviewing has been found by previous researchers to provide flexibility, preserve rapport, and given participants the opportunity to choose different levels of exposure, as well as preserve their intimacy (Deakin and Wakefield, 2013; Hanna, 2012; Seitz, 2015). In this particular case, the availability of mobile data allowed participants to find comfortable and private venues to conduct the interview (such as their cars) and negotiate whether they wanted to reveal their face or not. This method has been used effectively by Huysamen (2018) to research equally intimate issues.
Given the taboo and intimate nature of the topic discussed, previous reviewers have raised concerns about the possibility that participants may misrepresent their experiences. It is true that there is no clear way to verify participants’ testimonies, but it is equally true that this is a characteristic common to most qualitative research, particularly that dealing with intimate issues. After all, interviews are dramatic encounters (Lune and Berg, 2017) and research encounters are not free from the social performativity of everyday life (Goffman, 1959). While it is possible that some excerpts present a degree of exaggeration or misrepresentation, these should not be taken as skewing the results but rather as evidencing the degree to which bugchasing is as much about fantasy as it is about reality. The stories presented here explore how three men perceive PrEP as a barrier to intimacy, a method to negotiate desires and identity, and how they experiment with discontinuation.
Scott: PrEP as a chemical condom
Scott is a 53-year-old man from Australia. He is committed to bugchasing and spends a significant part of his day looking for partners and visiting sex-clubs to have sex with multiple men. He explains: “I’ve come full spectrum, I think. Safe sex to experiencing how amazing HIV is, how much better feeling it is.” He argues that he started strictly using condoms but, around 2010, he commenced to have condomless anal sex. From there, he became more interested in bugchasing. He now refuses condoms and spends a significant part of his life searching for a partner to infect him. In the past 2 years, he has been more actively seeking infection but has been unlucky so far, which he attributes to the low prevalence of untreated HIV in his area. PrEP has played, for Scott, a significant part in the process of coming to terms with his own desires. In an email before the interview, Scott had explained that he had once been on PrEP after having it offered by his doctor. Scott acknowledges that PrEP “is good for people who want to remain negative,” but that he had decided to stop it 2 years before the interview. This came up in the interview:
Can you elaborate a bit more about why you stopped PrEP?
It’s just that I felt it was blocking what I was accepting from someone else. It was a chemical condom. I was taking guys in my body, even the ones I couldn’t see in dark rooms. I needed to make a decision, and stopped PrEP.
Scott describes PrEP as a “chemical condom.” This is significant because it evidences how PrEP does not arrive to an empty field of signification, but rather links to pre-existing narratives about condoms. While PrEP is not a condom in the sense that it does not prevent other STIs or pregnancy, Scott resorts to the image of the condom to articulate his perception of PrEP as a barrier to intimacy. He is not necessarily referring to physical intimacy (precluded for some by the latex barrier of the condom), but to a sort of fantasy viral intimacy based on the exchange of bodily fluids and, Scott hopes, HIV. The role of intimacy has been explored by scholars before, who suggest that the transmission of HIV for bugchasers serves to establish profound links akin to a life-long marriage as well as belonging to a larger community (Dean, 2009). The notion of PrEP-as-chemical-condom is not unique to Scott. Preciado writes: The birth control pill and Truvada share the same mode of operation: they are chemical condoms designed to prevent “risks” during sexual intercourse, regardless of whether this risk is an unintended pregnancy or the transmission of HIV. (Preciado, 2015: n.p.).
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Preciado, while not discussing bugchasing, evidences the degree to which PrEP ties in with pre-existing narratives and may be perceived as a barrier to “risk.” It is this foreclosing of risk that Scott finds a “turn off.” Finally, it is also worth realising that Scott conceptualizes his discontinuation of PrEP as an active choice (“I needed to make a decision”). Far from a passive withdrawal or failure to adhere (or be retained into care), Scott takes an individual decision to stop PrEP in order to increase his perceived risk. This risk-taking decision serves him to further his feelings of intimacy and connection with other men, as well as build his own identity as a “bugchaser.”
Milo: Stopping PrEP and coming to terms with desires
Milo is a 28-year-old man from France. Milo is located in a liminal zone: he spends significant amounts of time on bugchasing websites and talking about bugchasing on social media, routinely engages in condomless anal intercourse, and actively seeks HIV positive partners but, at the same time, he does not confidently label himself as a bugchaser. The complexity of his situation is evidenced by his use of PrEP, which he discusses at two moments in the interview: I’m actually on PrEP, but not all the time. I think it’s a great way to stay HIV negative as you can still bareback. As many bugchasers say, it’s like ‘training wheels’ for the moment you decide to go without it.
And later acknowledges his discontinuation, It’s been a few months since I really stopped taking my PrEP pills regularly. During August, I totally stopped it for 1 month and got loaded by four guys (thee anon and one friend). It was a real turn-on not knowing what would happen.
At the beginning of this paper, it was explained how difficult it was to determine what discontinuation was in the case of PrEP—which does not need to be taken daily. Milo evidences this complication with his acknowledgement that he is on PrEP but, at the same time, that he has not taken it for the past month—despite engaging in seemingly risk behaviors. This juxtaposition reveals how Milo is experimenting with his PrEP use as a way of negotiating his desires and identity as a bugchaser.
Milo mobilizes the image of PrEP as “training wheels,” which is common among bugchasers: the potential of PrEP to separate sexuality from HIV risk is what makes Milo realize just how aroused he was at the potential of risk itself. Thus, PrEP allows Milo to come to terms with his own desire for “risk” in his sexuality—he is coming to understand that it is HIV risk that arouses him. In doing so, PrEP acts as “training wheels” not only because it allows Milo to gain confidence on his desires but because, in doing so, it facilitates the building of an identity as a “bugchaser” who commits to those desires for HIV.
It is also worth noting that the idea of “training wheels” may generate an unwarranted sense of linearity by which PrEP use will lead to its discontinuation and search for HIV. This narrative was also present in Scott’s interview. However, both Milo and Luke—the next participant—disprove this. Milo’s story is far from linear: it is a contradictory and fluid process of PrEP use and discontinuation and Milo makes it clear that he is not sure whether he will return to PrEP or not. Thus, PrEP is a tool for negotiating desires in complex and non-linear ways.
Luke: Experimenting with discontinuation
Luke is a 34-year-old man from London. Luke made clear in the interview that his bugchasing is eminently fantasy and he is taking PrEP regularly as part of a nation-wide trial. At the beginning of the interview, Luke explains that he is aroused by the “taboo-breaking” character of bugchasing but that he has no intention of actually seeking HIV. However, complications arise during our conversation. First, Luke argues that he is increasingly more interested in the HIV status of his potential partners:
So you think you tend to hook-up with people based more on their HIV status than before?
I’d definitely say so, yeah. Definitely so. It’s not primary, the main thing that I go out for when I’m looking, but it’s definitely, definitely, one of the. . . like, in my preferential vision more often.
This points toward an increasing significance of his bugchasing desires in his sexual practices. He continues:
Do you think you’re a bugchaser yourself?
Hmm. . . eh. . . I would say probably in the last. . . I would say when I was younger, definitely, definitely not. In the last year or so, I’ve come pretty close to it.
How do you define coming closer to it?
Well. . . there’s been times when, you know, I’ve had lots of unprotected sex with people knowing fair well what their status is but have been taking the medication [PrEP] and my status, as it currently is, is still negative. I suppose it’s whether or not I ever have the inclination to then turn around and don’t take the medication [. . .] as it were. I suppose it’s still. . . hmm. . . it’s still. . . I haven’t actually gone through with it as of yet, if that makes sense.
This exchange reveals that, for Luke, “coming closer” to being a bugchaser is equated with the possibility of discontinuing PrEP. Thus, discontinuation appears as an assertion of identity. Unlike Scott or Milo, Luke is still only theoretically thinking about the impact of potential discontinuation. He describes “going through the motions” of bugchasing by engaging in seemingly high-risk encounters while, at the same time, remaining adherent to PrEP. Interestingly, PrEP for Luke serves to negotiate his own bugchasing desires, his position between bugchasing “fantasy” and “reality.” Preciado also talks about the relevance of PrEP for identity: Furthermore, with chemical condoms, the decision to use them is no longer made during the sexual act, but in advance, so that by swallowing the molecule, the consumer builds his own subjectivity in a temporal relationship of projection into the future: it is a question of being transformed by the ingestion of the drug.
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(Preciado, 2015)
Luke takes PrEP daily, in the morning, and thus daily negotiates his desires and identity. In taking PrEP, he is confronted with his behaviors and desires, and with their potential effects. This process of locating himself in relation to fantasy and reality everyday may be difficult, as evidenced by his uncertainty about whether he will “turn around” and not take PrEP at some point. Luke thus illustrates one of the most interesting features of PrEP: unlike condoms—which people have to decide about using while “in the heat of the moment”—PrEP requires ‘cold-headed’ action before sex is happening. PrEP forces people to think about their desires, practices and HIV risk every day. Luke evidences this and explains how PrEP may serve to negotiate his identity.
Thinking beyond PrEP
Since its approval in 2012, PrEP has been hailed as a “game changer” in HIV prevention (Brady, 2015; Rhoden-Paul, 2019), and research has shown that it has the potential to become so. However, to develop effective delivery programs, it is necessary that we understand how people make sense of it, particularly how they may perceive it negatively. The stories of Scott, Milo, and Luke evidence that PrEP discontinuation can be a complex process of negotiating desires, risk, and identity. Scott sees PrEP as a “chemical condom” and barrier to intimacy, and actively discontinuing it helps him build his identity as a bugchaser. Milo thinks of PrEP as “training wheels” that allow him to gain confidence on his desires and facilitate committing to an identity as bugchaser. Luke, finally, is perhaps the one most unsure about discontinuation and yet nonetheless he most clearly evidences how thinking about discontinuation confronts him with his desires and helps him negotiate his position in between bugchasing fantasy and reality. 8 These men’s stories and bugchasing desires are evidently niche and yet nonetheless exploring their narratives becomes an inroad to considering how PrEP discontinuation (much overlooked in PrEP guidelines) can and does have complex, emotional and identarian aspects beyond passive disengagements or lack of risk.
This research has two clear limitations. The first is that these men choose to actively discontinue (or think about actively discontinue) PrEP. This is a privileged option when so many people who discontinue PrEP do so because of systemic barriers (lack of insurance, affordability, lack of specialized healthcare provision, racism, ableism, etc.) or for reasons such as side-effects or stigma. At the same time, it is also worth noting that this paper did not consider the broader questions of PrEP as an intervention: the routines of accessing healthcare, testing, use of PEP (post-exposure prophylaxis), distrust of medical establishment, etc. These were not considered in the current piece because the three participants, Scott, Milo, and Luke, did not discuss these as relevant to their decisions to discontinue (or think about discontinuing).
Building through discontinuation
This article proposes two key conclusions: first, that discontinuation is a fluid and flexible process, far from linear or strict decisions. And, second, that discontinuation—for these men—serves to experiment with desires and build an identity. The stories of Scott, Milo, and Luke evidence the difficulty that lies in attempting to define discontinuation: their processes are complex, fluid, and varied and go from “making a decision” to ambivalently moving between periods of taking and not taking PrEP. Their decisions are also framed within ongoing processes of negotiating their desires and practices. This is in contrast with the paucity of information about discontinuation provided in many guidelines and protocols for PrEP (see above). Thus, guidance for PrEP should consider how people make sense of it (and its discontinuation) in subjective and contextual ways.
The second and, perhaps more interesting, finding is the conceptualization of PrEP discontinuation as a process of negotiation of desires and building of a bugchasing identity. As Preciado (2015) suggests, far from simple and non-invasive, PrEP taking ties into existing narratives about medicalization, intimacy, and connection. Not only so, but, since it has to be ingested before the sexual activity commences, it also brings to the fore processes of negotiating desires and identities—much more so when those desires and identities are as stigmatized as bugchasing is in Scott, Milo, and Luke’s contexts. Perhaps the most enticing of the findings is a sort of reversal of PrEP: while it is hailed by many because it forecloses HIV risk and in many cases the anxiety this generated, the men interviewed here describe how, in foreclosing risk, PrEP made them aware of their desires for that risk itself. That is, in the absence of risk PrEP granted, the relevance of that risk became central to their sexual lives. While this could be seen as unique to bugchasing, the prevalence of debates about risk compensation 9 regarding PrEP hint at this dynamic being a more general concern, even if there is scant empirical data that support this theory (Jones, 2017; Marcus et al., 2013).
Besides risk or, rather, through risk and its acceptance, Scott, Milo, and Luke also use PrEP discontinuation as a process through which to build their own identities as bugchasers. “Bugchaser” is far from a fixed, stable, or agreed upon label, and these three men do all identify as bugchasers to an extent despite being at very different stages of PrEP use and risk taking. Nonetheless, their replies evidence a common perception that discontinuing PrEP is part of a larger claim to a bugchasing identity. The stories of Milo and Luke in particular reveal how this is a complex process: while they did come forward to participate in a research project that ostensibly asked for “bugchasing participants,” they also show an ambivalence about just how much of that identity they are willing to take on, how they balance their desires and risk. PrEP (and, in particular for this case, PrEP discontinuation) thus arises not only as an intervention for HIV prevention, but also a tool through which to negotiate desires and identity.
Footnotes
Funding
The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding provided by The University of Manchester.
Ethical approval
Ethics approval granted on 23/07/2018 by The University of Manchester Social Sciences School Panel, reference 2018-4849-6765.
