The second paradox covered in this book relates to contradictory ideas about PrEP eligibility. Many of our study participants in both case studies described having to navigate ideas about their being both eligible and ineligible for PrEP depending on who gets to define, or have a voice and a decision in, their PrEP use. Many of our study participants recognised their eligibility for PrEP because of their affiliation to a PrEP target group and their chance of contracting HIV. Yet – again, in both our case studies – many people in society in general and also among their immediate family and friends either considered them ineligible or sought to maintain their ineligibility by reproducing stigmatising representations of who a PrEP user is. This was especially the case for young women in Zimbabwe who encountered ideas and points of view that made them question or renounce their PrEP eligibility. Many parents and male partners objected to these young women’s PrEP use, demonstrating the presence of cultural eligibility criteria. For queer men in Denmark, tensions around (in)eligibility focused on a mismatch between their ideas of eligibility and those detailed in policy frameworks and applied by PrEP service providers. Many of our queer male participants did not meet the official criteria for PrEP eligibility and spoke about the need to wilfully lie to PrEP service providers in order to access PrEP. Regardless of context, opposing and diverging understandings of PrEP (in)eligibility were omnipresent and gave rise to numerous everyday PrEP negotiations in the form of dealing with stigma, with both the queer men and the young women having to consider their responses to, and the consequences of, the efforts they had to make to negotiate their own eligibility. These will be discussed under the following headings:

  • Are ‘good girls’ on PrEP? Considering cultural eligibility criteria

  • How will others view my eligibility? Fearing stigmatising associations with PrEP use

  • Should I lie or appeal for flexibility? Navigating ‘the system’ and negotiating eligibility

Are ‘good girls’ on PrEP? Considering cultural eligibility criteria

As already mentioned, most of the young women participating in our Zimbabwe study considered themselves eligible for PrEP. The married young women in particular talked about their chances of contracting HIV from their husbands, whom many strongly suspected – or even expected – to be unfaithful. The women spoke positively about PrEP and recognised its unique potential to protect them against HIV, particularly when condom use is difficult to negotiate. While sexually active adolescent girls and young women are eligible for PrEP from health services in Zimbabwe, it is evident from our young female participants that these are not the only criteria they need to navigate. PrEP’s signalling of sexuality required young women who live with a partner or husband, or at home with parents, to consider cultural eligibility criteria. Premarital and extramarital sex is frowned upon in this cultural context and challenges gender norms and ideas about what it means to be a ‘good girl’. Illustrating the impact of collective understandings of what it means to be a ‘good girl’, many young women, such as 20-year-old Rosey, spoke about their parents’ disapproval of them having sex if unmarried: ‘I am not yet married so in their eyes I am not supposed to be having sex at this point.’ Ellena expanded on this in a description of a photograph (see Figure 4.1):

A close-up of a sexual health poster, featuring a woman and a man gazing at each other longingly.
Figure 4.1:

Fear of judgement from parents

This is a picture of two older people. A man and a woman. And I took it to represent a mother and a father with children who are adolescents or young adults. The way our society is set up, parents will never acknowledge that their children are having sex especially if they are not yet married. This then implies that they are not expected to be using any HIV prevention methods. This counts as a discouraging factor for the children because they then fear judgement from their parents and end up not protecting themselves from HIV by taking up PrEP. (Ellena, age 21, eligible for PrEP)

Strong collective understandings of the need for unmarried girls to refrain from having sex meant that many of our young female participants articulated a shared belief that parents do not consider unmarried young women eligible for PrEP. Adding to this disapproval, Memory noted in a focus group discussion that ‘parents also won’t accept PrEP because this promotes promiscuity’, highlighting a fear that PrEP may further legitimise and reproduce promiscuous behaviours. In another focus group discussion, Janice, who is eligible for PrEP and within the 18–24-year age range, shared: ‘Even grandmothers you will be staying with will deny you access to PrEP because they will be saying that their child is clean and so, accessing PrEP will result in promiscuity which is not allowed by our grandmothers.’

The idea that parents do not want their girl-children to engage with PrEP was prominent and not wholly unfounded. Elsewhere we report on parents’ attitudes towards PrEP and find a mix of positive and negative attitudes towards PrEP (Skovdal et al., 2023). This suggests that parents may be more accepting of PrEP than is commonly believed among our young female participants. However, parents who reported having accepting attitudes towards PrEP still struggled to reconcile this with the traditional gender norms of what it means to be a ‘good girl’ (Skovdal et al., 2023), underlining the cultural dismissal of PrEP for ‘good girls’. A few young women went on to try and explain where these ‘good girl’ notions come from, often referring to either culture or religion. Ellena, in a description of a photograph she took of a church poster (see Figure 4.2), details her belief that religious leaders play a central role in promoting the public gender norms that govern young women’s sexuality:

A poster from a church in Zimbabwe that advertises a faith-based event.
Figure 4.2:

A church poster

The second picture I took was of a church poster with a pastor and his wife. These are religious leaders who act as our moral compasses in our communities. Church leaders set standards for behaviour that is acceptable and for behaviour which is not acceptable. They police sexual behaviour and frown upon what they define as being against the word of God. So when looking at barriers to the uptake of PrEP, church leaders play a key role. They preach abstinence as the only way expected from unmarried people. (Ellena, age 21, eligible for PrEP)

Married young women expected similar dismissals of their PrEP eligibility from their husbands. While a few young women could, from personal experience, describe having support from their husbands, many others noted that their husbands were likely to disapprove of their PrEP use. Some women explained that their PrEP use would be interpreted by their husbands or male partners as either a signal of the women’s infidelity or as distrust of their partner. As a result, this led to the common understanding, as articulated by Tanya, that young women will ‘fail to be on PrEP because their husbands will not approve of it’.

PrEP has been hailed as a female-controlled HIV prevention method, but our data highlight that before young women get to the point of accessing PrEP, they have to navigate disapproving attitudes rooted in a symbolic context of cultural expectations and representations of what it means to be a ‘good girl’. While most young women in our study were able to personally resist this representation and saw ‘good girls’ as those who were able to protect themselves and others from HIV, collective meanings, and interpretations of how parents and partners might negatively react to their PrEP use, highlight the need for everyday PrEP negotiations. Young women must consider and work out parent or partner attitudes towards PrEP, their anticipated reactions, as well as the consequences of being discovered to be a PrEP user.

In the next section I discuss how ‘good girl’ notions are often enforced through PrEP-related stigma, which young women must also navigate and negotiate in everyday life.

How will others view my eligibility? Fearing stigmatising associations with PrEP use

Many young women also feared PrEP-related stereotypes, such as PrEP’s association with women with so-called loose morals or prostitute traits. PrEP was often referred to as being an HIV prevention method for sex workers. This understanding is not entirely baseless and reflects the fact that more than half of the people who were offered oral PrEP in Zimbabwe following its introduction in 2016 were female sex workers (Ministry of Health and Child Care, 2018). However, sex work is highly stigmatised. One female PrEP user in Zimbabwe captures how she is confronted with stigmatising ideas about PrEP because of it being, among other things, associated with sex work. She explains how this connection challenges her engagement with PrEP services:

Being a young woman on PrEP in our community is difficult because people are conservative and do not know that PrEP helps. I face challenges accessing PrEP. People think that I am on antiretroviral therapy, yet I am not. Many people are saying I am a sex worker, yet I am not. This becomes a challenge when I am going to collect PrEP at the hospital. As a young woman it is difficult to be on PrEP because in the community, they are not accepting me properly. (Stephanie, age 23, PrEP user)

For Stephanie, PrEP’s association with sex work challenges her engagement with the drug. However, as she also notes, stigmatising attitudes about who a PrEP user is, including PrEP’s association with sex work, make it generally very difficult for women in her community to access PrEP. As there is a requirement for female sexuality to be considered ‘virtuous’ in this cultural setting, it is only a short step from the cultural ‘anxiety’ and ‘panic’ associated with HIV prevention methods that allow girls to be sexual (that is, in ‘virtuous’ contexts such as marriage, or indeed before marriage), to representing PrEP use as irresponsible and immoral. Stephanie also alludes to PrEP’s association with HIV treatment. Being a daily pill, collected from the same sexual infection departments that administer antiretroviral therapy for treatment of HIV, led to representations of PrEP as a cover-up for treatment. In other words, if you are a young woman on PrEP, people in the community may assume that you live with HIV and are on treatment for the virus. While Stephanie had managed to ignore or deal with social representations of PrEP as being either for sex workers or a cover for HIV treatment, it was an issue she had had to confront and continued to encounter.

Most of the young women in our study were not on PrEP, but were eligible and considering it. They too had thought about the anticipated implications of stigmatising attitudes affecting their engagement. Rachel, who is 25 years old and eligible for PrEP, explains: ‘People are scared of taking PrEP because the tablets look like the ones that are taken by HIV positive people, so one may be scared of what people will say about the person taking tablets that are similar to that.’

Stephanie’s interview captured a series of everyday PrEP negotiations, spanning mental activities and partner interactions. Through an analysis and interpretation of how HIV-related stigma has evolved in her community, Stephanie believes that the stigmatisation of PrEP users will soon come to an end: ‘I just told myself that people talked about those [people] on antiretroviral therapy [ART], and it [the feeling of stigmatisation] stopped.’ Stephanie also engages in an ‘othering’ of stigmatisers, demonstrating a cognitive bias against those whom she perceives as different or less knowledgeable than her: ‘People say things without proper understanding.’ Finally, she has involved her husband in her decision-making, resulting in him knowing about and approving her PrEP use: ‘My husband is aware that I am taking PrEP.’ Through everyday PrEP negotiations, Stephanie has actively confronted stigmatising attitudes triggered by PrEP user representations. This confronting of stigmatising attitudes was also demonstrated by Angela, a 23-year-old PrEP user, who explained: ‘There are others who believe that PrEP is a form of ART [antiretroviral therapy] and that people who take it are brainwashed into believing it is for HIV positive people. But because we know what PrEP does, we try to correct their perception about it.’

Stigma linked to PrEP is rife. While some young women like Stephanie and Angela manage to navigate stigmatising attitudes and do their best to combat PrEP-related stigma, it is a barrier to PrEP interest, access, and uptake for many others. PrEP-related stigma requires young women who are interested in PrEP to carefully consider and think through the potential consequences of accessing PrEP from their local clinic. Precious, Megan, and Hope, three young women who consider themselves eligible for PrEP, detail their understandings of how local clinics and the way PrEP is administered constrain their ability to take it up. Precious describes difficulties in taking PrEP discreetly, highlighting the likelihood that someone will recognise her and that word will spread that she is on PrEP:

When you get to where the pill is accessed, you may see a relative or someone from the community. If they see me leaving the place with a pill box where it’s written PrEP, they will go back to the community and tell them that I am taking PrEP. (Precious, age 22, eligible for PrEP)

Girls would be shy to go and look for HIV prevention methods at the hospital because everyone will know that she is having sex, and she will be labeled a loose woman. (Megan, age 20, eligible for PrEP)

Along related lines, others represented PrEP service providers as being indiscreet and likely to inform parents that their girl-child is seeking out PrEP. When women toyed with the idea of taking PrEP discreetly, the risks associated with parents or partners discovering their PrEP use were often stated as superseding the benefits of PrEP. This and the social risks of PrEP use are discussed in detail in Chapter 7.

Another issue raised by the women was the attitude of some healthcare providers. Healthcare providers were on occasion represented as being part and parcel of the community, thus holding the same conservative and judgemental views as their parents, and therefore actively discouraging adolescent girls from taking up PrEP:

Young girls fear going to the nearest clinics because of their age, and service providers asking her why she is coming to the clinic to get HIV prevention methods like PrEP and condoms at such a young age. She will end up having unprotected sex and not using any other HIV prevention methods because she will be fearing to go to the nearest clinic where the service providers are judgemental. (Hope, age 24, eligible for PrEP)

The focus of this chapter thus far has been on young women in Zimbabwe. They form part of a collectivist culture, and their everyday PrEP negotiations are characterised by having to consider the interests, wishes, and expectations of the people around them. So, while the young women in our study recognise their eligibility for PrEP – meeting the criteria set out by health services in Zimbabwe – they are compelled to also consider another set of more culturally embedded criteria that dictate that only girls with ‘loose morals’ or ‘prostitute traits’ are eligible. PrEP is supposedly redundant for ‘good girls’, rendering them ineligible for it. Practically, this means that people around them, and even PrEP service providers who side with cultural criteria for eligibility, are perceived to not consider them eligible, thus challenging their access to and engagement with PrEP. It also means that some young women struggle to ascertain their eligibility. On the one hand, they consider themselves to be ‘good girls’, albeit perhaps using different standards to those of their parents, partners, and the broader community; on the other hand, they recognise their chances of contracting HIV. Young women may therefore find themselves battling ideas about their (in)eligibility – having to negotiate their own eligibility, and navigate (and reject) their community’s cultural desires and expectations of them as being ineligible.

Eligibility also has to be negotiated by queer men in Denmark. To limit the number of people on PrEP, driven by there being a cap on PrEP financing within the Danish national health services, only individuals who are demonstrably vulnerable to HIV are eligible for PrEP. However, queer men who fail to meet the strict criteria detailed in policy frameworks may still consider themselves eligible, albeit from a self- and community-defined HIV vulnerability perspective. As I will show in the next section, these diverging understandings of (in)eligibility trigger everyday PrEP negotiations geared to help queer men navigate, or even manipulate, ‘the system’ to access PrEP.

Should I lie or appeal for flexibility? Navigating ‘the system’ and negotiating eligibility

PrEP services in both Denmark and Zimbabwe operate within a policy framework with guidelines detailing how PrEP should be delivered and who qualifies for it. Given resource constraints, such guidelines have been devised to focus on those most vulnerable to HIV, optimising impact and value for money. At the time of our Zimbabwe study, PrEP had only recently been rolled out for adolescent girls and young women. As such, some of the young women participating in our study, despite knowing they are part of the target group, questioned their own eligibility, thinking that the limited stock of drugs should be preserved for young women more vulnerable to HIV than them. As noted by Zendaya in a focus group discussion, this perception also contributed to the idea that young women would be questioned about their sexuality when seeking PrEP, which would make them feel intimidated and embarrassed:

According to my own understanding on PrEP, it is not yet readily available to all clinics in this community and even if it is accessed from the clinics, special preference is given to those who are at a higher risk of HIV. So, if it is a young person who has gone to the clinic to access PrEP, they may feel intimidated being asked a lot of questions. Some may even feel embarrassed with the questions that the nurses will be asking, and then decide that it’s not worth the effort. (Zendaya, in the age group 18–24, eligible for PrEP)

Zendaya further notes that the anticipation of having to justify and explain one’s eligibility for PrEP may be off-putting for some young women, who may then simply decide not to seek out PrEP. She also points to a discomfort in having to explain and justify this eligibility. She captures some of the thinking and considerations that go into the decision of young women to seek out PrEP. Such everyday PrEP negotiations are undoubtedly also applicable to some queer men in Denmark who are considering PrEP but are unsure if they meet the official criteria and have little interest in talking about their sex life. However, for our queer participants, most of whom are already on PrEP, the focus was on how they navigated ‘the system’ and negotiated their eligibility, which may or may not be aligned with official guidelines.

Queer men in Denmark spoke at length about their concerns about not meeting official criteria for PrEP eligibility. However, rather than necessarily seeing rigid criteria as something that prevents them from accessing PrEP, several queer men directed their negotiation efforts into making sense of, and critiquing, what they considered a broken system for determining eligibility. They also sought to find ways to navigate the system and negotiated a new understanding of eligibility – one that differs from the official policy framework.

The reason for all this everyday PrEP negotiation work comes down to competing interests and opposing ideas about the aim of PrEP. From the perspective of the Danish national health service, PrEP is a public health measure aimed solely at preventing HIV transmission among individuals vulnerable to the virus. In the context of a national health service, this needs to be achieved in the most cost-effective way. It is accomplished by applying rigid eligibility criteria that stipulate that queer men must have had unprotected anal intercourse with at least two male partners within the last 12 weeks, or acquired syphilis, chlamydia, or gonorrhoea within the last 24 weeks. For the PrEP service providers I have spoken to, the motivation to apply eligibility criteria comes down to the principle of ‘do no harm’, meaning they do not wish to prescribe PrEP medication to someone who is not vulnerable to HIV. However – as I demonstrate in forthcoming chapters – for many queer men, PrEP is much more than a method for reducing HIV incidence within a population group. PrEP provides comfort and safety; it liberates and makes having sex fun again; it removes the black cloud of fear that has tainted queer sexuality for decades; it provides a community and social identity. For some, PrEP removes the shame of queer sex, and for others it supports a long-standing promise to their parents not to contract HIV. Queer men’s recognition of what PrEP offers above and beyond reducing HIV incidence within their community is attractive. However, queer men who are unable to demonstrate their vulnerabilities based on past behaviour are ineligible. So are queer men who have the intention of taking more risk. The limited scope of the official criteria with regards to past and high-risk behaviour was considered nonsensical by many of our queer participants. They referred to it as a chicken-and-egg situation and expressed frustration that ‘the system’ requires them to take risks before qualifying for PrEP. Both Jens and Sigurd raise what they consider the absurdity of not being able to pre-empt risk, and of future intentions or probabilities not being considered:

I was at the clinic six months ago, and the PrEP provider told me that I was not slutty enough to be given PrEP. For a long time, I have found it amusing that you need to drive 140km/h without a seatbelt to be eligible for PrEP, and where it may be too late. (Jens, age 40, awaiting PrEP)

If you knew that there was a high probability that you are going to do it, it would be very nice to be able to take care of yourself beforehand. (Sigurd, age 35, PrEP user)

Queer men who in the past have done everything in their power to limit their risk of HIV but aspire to having more adventurous and fulfilling sex lives, either by increasing their number of sexual partners or by looking to have condomless anal sex, do not meet the official eligibility criteria. They know that continuing ‘on the high road’ does not grant them PrEP. Jens, who six months prior to his interview for this study was denied access to PrEP, reportedly changed his sexual behaviour to meet the eligibility criteria: ‘I went back three weeks ago. My sex life has changed […] I answered some of the questions differently, which made her conclude that I was totally eligible. I am now waiting for a call, confirming my referral.’ Given the diversity of his more recent sexual practices, Jens goes on to claim that he was not put in a position of having to lie. However, if he had to lie to access PrEP, he now knows what to say and would not hesitate to embellish his past sexuality:

I am not going to lie to get PrEP, because I have no need to. But if I find myself in a situation where I have to, in order to access PrEP, I will tell them that I have fucked four guys in the past six months without condom. I know that is what I have to say to get PrEP. (Jens, age 40, awaiting PrEP)

‘Knowing what to say’ to access PrEP may sound like an easy way to ‘work the system’. But for many of our queer participants, having to lie was not something they did lightly or felt comfortable sharing. Both Christian and Toke, who were otherwise articulate throughout their interviews, stumbled over their words and thoughts in their struggle to say that they had lied about their sexuality to access PrEP:

Well, when I came for an interview at … the hospital, uh. Then we talked about it and like um … And then, to be sure that I would get it, I just said … what they wanted to hear. Uh, that I had uhh, unprotected sex with a lot of people. And then I got it … like um … yes. […] there I think maybe I was a little … yes, nervous that I like … wouldn’t get it if I like … had … had talked a little more honestly about my sex life, or something like that, or … Well, I didn’t quite know how much it would take to … to get it. (Christian, age 26, PrEP user)

I, like, could read that there were some criteria. So, in practical terms, it’s about having a … a … I mean, a sexual behaviour with frequent unprotected sex. And … at the time, I didn’t actually … I mean, I did not actually meet the criteria. So … I lied, you might say. I knew what I had to say, and then I got the medicine. You could say that my sexual behaviour has changed since. I have become more active, and now I meet the criteria [laughter]. (Toke, age 27, PrEP user)

Christian and Toke both knew they did not strictly meet the criteria for PrEP, and entered the PrEP initiation process knowing they had to embellish the truth about their past sexual practices in order to access PrEP. Some participants spoke about how they had received advice from PrEP-using peers to just ‘say what they want to hear’, and others had heard that some PrEP providers were more lenient in their interpretation of the guidelines. Specific names of nurses and doctors known to also consider future vulnerabilities to HIV in their assessment circulated within some of the queer men’s peer networks. As such, young men like Christian, who are looking to start taking PrEP, either need to read the situation and pick up on subtle cues in order to say ‘what it will take to get it’, or actively seek out named PrEP service providers who are known for their leniency.

These everyday PrEP negotiations are justified, normalised, and enabled through users’ interactions with peers and in social networks, where they talk about the so-called absurdity of having to take risks before being able to access PrEP. Although they lie with unease and feel uncomfortable talking about it in a recorded interview, their intentions of reaping the benefits of PrEP – which for some, like Toke, include more sexual risk-taking in the future – make them approach eligibility very differently from the policy frameworks that PrEP service providers enact. Nonetheless, these diverging understandings – including what comes first, the chicken (demonstrated vulnerabilities to HIV) or the egg (risk intention) – shape paradoxical ideas about (in)eligibility, which queer men have to carefully navigate, not least as they mentally prepare themselves for their PrEP prescribing consultation and the need to wilfully lie and navigate their way to eligibility. While our queer participants succeeded in this endeavour, others may not have the support network or stamina to enter an appointment with healthcare staff knowing that they must lie to access PrEP, thus creating inequalities in access.

Opposing ideas about PrEP (in)eligibility were also expressed by some of the young women in Zimbabwe. Here, too, contention was a result of rigid understandings of who qualifies for PrEP. However, unlike the experiences of queer men having to deceive and work ‘the system’, young women in Zimbabwe alluded to eligibility criteria being more amenable to renegotiation. One example is from Angela, who described how she managed to renegotiate the terms around her PrEP use by convincing healthcare staff that her husband should also be deemed eligible and have access to PrEP:

When I approached PrEP services, I asked them if my husband could also take the pills because that would be the only way I could take the pills. They were adamant that only women are taking the pills, but I explained my situation, that we are open to each other, and I would not want to hide this from him. I would rather take the tablets with my husband with no secrets. After a while they agreed that my husband can take the pills. I then went home and told my husband who was okay with this, and we went back, got tested, counselled, and initiated onto PrEP. (Angela, age 23, PrEP user)

Unlike many young women in Manicaland, Zimbabwe, Angela can talk openly about PrEP with her partner, which she considers a prerequisite for her eligibility. Angela’s account ties back to some of the issues discussed earlier in the chapter, underlining PrEP use in Zimbabwe as a profoundly gendered practice (see Chapter 2 for the background of gender orders in Zimbabwe) that gives rise to many considerations and negotiations.

Conclusion

This chapter has shown that there are different and diverging ideas about what constitutes (in)eligibility for PrEP. Young women in Zimbabwe may be considered eligible for PrEP by treatment guidelines, yet their eligibility is revoked by cultural eligibility criteria. Many of our queer participants, because of their future intentions to engage in more adventurous sex, considered themselves eligible for PrEP, yet did not always meet the specific eligibility criteria of treatment guidelines that focus on past sexual behaviours. These opposing ideas about (in)eligibility were a source of many different everyday PrEP negotiations. Young women in Zimbabwe had to question and consider their allegiance to traditional understandings of what it means to be a ‘good girl’ – that is, someone who does not engage in premarital and extramarital sex and, therefore, is not culturally considered to be vulnerable to HIV. Related to this, and further adding to their stress and deliberation, is the need of the young women to weigh up the fear and social risks of the stigmatising associations of PrEP eligibility against their perceived vulnerabilities to contracting HIV from husbands or partners, whom they often represented as unfaithful. The deliberations of young women in Zimbabwe illustrate that they are part of a collectivistic culture and are required to carefully navigate their own biomedical and socio-cultural understandings of what being eligible for PrEP means and represents. Our queer male participants in Denmark appeared to operate more independently and were less bound by social stigma and control. Here, however, a collective understanding of eligibility justified by future risk-taking intent (and reaping the other benefits that come with PrEP) highlights a shared community representation of PrEP eligibility that, although deviating from policy frameworks, flourishes within social networks of queer PrEP users. This understanding of PrEP eligibility helps justify telling ‘little white lies’ to negotiate eligibility. However, deceiving healthcare providers and sharing their stories of this deception were not done lightly or without careful deliberation.

This chapter has shown that PrEP eligibility criteria take different forms and arise from different motivations and needs. Contrary to many assumptions, the eligibility criteria outlined in official treatment guidelines and policy frameworks are not the only criteria that determine PrEP access. They do, however, provide an important backdrop for resistance and the creation of alternative social (in)eligibility criteria. These alternative criteria, which often conflict with official guidelines, lead to a paradox: queer men and young women may find themselves simultaneously eligible and ineligible for PrEP, depending on which criteria are applied. This paradox emerges in PrEP users’ everyday social lives, and as this chapter has shown, necessitate pensive negotiation.