Acceptability of PrEP for London gay men affected by perception of risk, sexual partners’ attitudes and the stigmatisation of sex

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Pre-exposure prophylaxis (PrEP) is broadly acceptable to London gay men who are at risk of acquiring HIV, with many men seeing its potential to protect them from infection and to reduce anxiety during sex. Nonetheless, the lack of honest discussion about sex and risk with friends, peers and in the wider community is likely to impact the acceptability of PrEP, according to a doctoral thesis by Will Nutland at the London School of Hygiene and Tropical Medicine.

“Those seeking to undertake future research or practice into PrEP acceptability should understand that ‘acceptability’ means far more than whether a technology will work, whether people will be willing to use it, or whether it will cause side effects,” he says. “Acceptability models need to capture social dimensions, and understand that personal considerations are shaped – and in themselves shape and influence – inter-personal and community or societal dimensions.”

His data come from in-depth, qualitative interviews conducted with 20 gay men living in London. Participants were given information about potential PrEP methods and the results of the iPrEx and CAPRISA studies, and given the space to reflect on the possibilities that the new methods provided.

Glossary

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

disclosure

In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

post-exposure prophylaxis (PEP)

A month-long course of antiretroviral medicines taken after exposure or possible exposure to HIV, to reduce the risk of acquiring HIV.

safer sex

Sex in which the risk of HIV and STI transmission is reduced or is minimal. Describing this as ‘safer’ rather than ‘safe’ sex reflects the fact that some safer sex practices do not completely eliminate transmission risks. In the past, ‘safer sex’ primarily referred to the use of condoms during penetrative sex, as well as being sexual in non-penetrative ways. Modern definitions should also include the use of PrEP and the HIV-positive partner having an undetectable viral load. However, some people do continue to use the term as a synonym for condom use.

qualitative

Qualitative research is used to explore and understand people’s beliefs, experiences, attitudes or behaviours. It asks questions about how and why. Qualitative research might ask questions about why people find it hard to use HIV prevention methods. It wouldn’t ask how many people use them or collect data in the form of numbers. Qualitative research methods include interviews, focus groups and participant observation.

Of note, the interviews were conducted in late 2012, when awareness of PrEP was relatively limited in London. Participants were being asked hypothetical questions about potential products that they may not have heard of before the interview.

All interviewees were HIV negative; the majority were white and university-educated; ages ranged from 21 to 45. One of the criteria for participation in the study was to have had sex without a condom with a man not known to be HIV negative – they were therefore men who might benefit from new HIV prevention methods.

Most participants recognised that their risk reduction strategies (e.g. regular testing, trying to avoid sex without condoms with HIV-positive partners) were not infallible. They offered a variety of explanations for occasions when they had had sex without a condom, including loss of control (e.g. being pressured by a partner; drink and drugs) and ‘psychological’ explanations (e.g. depression; low self-esteem; a desire for transgressive sex).

Many simply felt that condomless sex had ‘just happened’ – it took place in the ‘heat of the moment’ for reasons that the men could not easily describe but mostly seemed to relate to a dominance of sexual desire over cognitive risk appraisal.

Roughly a third of the interviewees said they would definitely want to take PrEP if it was available, a third would consider it, and a third would not want to take it.

Personal dimensions of acceptability

Whether or not men considered themselves at personal risk of contracting HIV significantly influenced acceptability. Those who knew they were at risk of HIV, such as this man whose long-term partner was HIV positive and who also had casual partners, were more likely to be interested in PrEP.

“Would I use it? Um… I personally would personally. Probably. Absolutely!”

Equally, those who felt less exposed to HIV were less interested.

“I don’t think I’d want to put a drug into my system that I don’t necessarily need. I wouldn’t feel comfortable taking something when it isn’t really something I need, I guess.”

The more efficacious PrEP was thought to be, the greater men’s interest in PrEP. Men weighed up its benefits with potential drawbacks, such as side-effects. Although oral PrEP pills have in fact proven to have few side-effects, two-thirds of participants had significant concerns about this issue at the time of the interview.

When men had taken post-exposure prophylaxis (PEP) or had discussed the side-effects of antiretrovirals with HIV-positive friends, these experiences – good or bad – influenced their view of PrEP side-effects. Some also raised the question of how long it will take to know the long-term impact of a new product.

“I probably wouldn’t bother until there was more evidence to say that actually, going on this for five to ten years doesn’t cause any long term problems, and it’s fine to keep using it for that period of time.”

Most men did not think that their sexual practice would be different if they were using PrEP. They thought that PrEP would be used together with their current risk reduction strategies – such as decisions and discussions about condoms, HIV status, HIV testing history, being top or bottom, and withdrawal before ejaculation. For example, this man said he didn’t think his practices would change significantly.

“No. I don’t think so. No, I don’t think I would. I think I might be slightly more relaxed about it but not like ‘great, I’m on PrEP let’s go and get barebacked by 40 people or whatever’.”

Some men appeared to feel that sex without a condom was intrinsically risky. If they thought that PrEP could encourage them to use condoms less often, it might be less acceptable.

“I doubt I would do it purely because it would change the risk assessment of things I would do. It would make me more inclined to take more risks with unprotected sex.”

But other participants anticipated additional, more holistic benefits to PrEP. Several thought that PrEP might have a positive impact on their experience of intimacy and pleasure. It could reduce anxieties during sex or stress after sex – especially after a ‘slip-up’.

It could allow for new opportunities, as this man with an HIV-positive partner explained.

“To go without condoms … that would be a pretty amazing thing for our relationship. It’s always been a stress that we’ve never been able to do that, that we’ll worry about it. And more likely that we’ll consider each other as sexual partners. It takes away the fear that he’ll infect me and that’s something we both have in the back of our minds. We’ve never been able to get that close in almost a decade and a half.”

As described in a separate aidsmap.com article, the specific attributes of a PrEP product – a daily pill, pills before and after sex, injections, or a rectal gel – were important too, with different men having different preferences. Some products might be more or less convenient, discrete or comfortable. Some might be easier to adhere to or might fit better with an individual’s lifestyle (especially whether or not sex is pre-planned).

Acceptability was also influenced by the convenience and accessibility of the health services providing PrEP; how comfortable men were with medicines and medicalisation; and whether men thought they would be more likely to be exposed to sexually transmitted infections.

Interpersonal dimensions of acceptability

The research suggests that the acceptability of PrEP is not simply related to how acceptable it is for an individual to put the product in their own body. Also relevant is how acceptable it would be for that person to talk about PrEP with a sexual partner and how PrEP might fit in with negotiation between sexual partners.

Interviewees were asked to consider how they would respond to a sexual partner’s disclosure that he was using PrEP (assuming that the interviewee was not using PrEP himself). Their responses fell into two broad camps.

Firstly, many interviewees felt that a partner’s use and disclosure of PrEP demonstrated that he was looking after his health and wellbeing.

“He’s being responsible about his decisions. He’s doing something that reduces his chance of getting HIV so that makes me safer too. That would make me see him as being more responsible, rather than less.”

However, some interviewees imagined a PrEP user might be reckless, promiscuous and to be avoided.

“If you think about it… you can think that the other person is a slut if he’s taking it… he must be screwing around… he might not… but that must be one of your ideas...”

Some men weighed up both possibilities.

“I don’t know. I really don’t know. I absolutely have ambivalence on that one. On the one hand I’m thinking ‘great, they are people that give a damn and protect’ and the other hand I’m thinking ‘they are far more likely to be going out and having bareback sex and fucking other people’, right? I’m not sure about falling between those two. Both of them… yeah.”

When the interviewees were asked how they thought their own possible use of PrEP might be perceived by sexual partners, similar ideas emerged but the first narrative – of responsibility – was more prominent. Men perceived that their own use of PrEP would generally be seen as responsible and acceptable, but did not always apply the same lens to other PrEP users.

In relation to a sexual partner who said he was on PrEP, trust emerged as a significant issue. Just as a man who says that he is HIV negative or that has an undetectable viral load might not be telling the whole truth, this could occur with PrEP.

“I’d look them in the eye and think ‘are you just lying to have unprotected sex with me because that is what you want?’ I’ve had experience of that with someone. So, I wouldn’t trust them.”

“I think I’d make the same risk assessment that I always have. If it was in a club or a sauna then, no. If he was in my hotel room and there’s the [PrEP] tablets by the bedside, then maybe.”

With a partner who was known and trusted, some men might change some of their sexual practices.

“I probably wouldn’t bottom with him and have him cum inside me. I don’t think that would change. I might not use condoms with him if I was topping him… that might happen.”

When discussing their own potential use of PrEP, some men specifically said that they would not disclose it because they wanted to stay in control of what they did sexually. For example, this man was asked if he would talk about being on PrEP with sexual partners who put pressure on him to have sex without a condom.

“No! No! It would give them another reason to push me. I would feel more comfortable anyway… and either have unprotected sex with them anyway or have protected sex with them… but I wouldn’t tell them.”

Community dimensions of acceptability

In considering how acceptable PrEP might be in the wider community – and how this could have an influence on how acceptable PrEP would be to them personally – over three-quarters of participants raised the issue of stigma.

Rather than PrEP itself being the focus of stigma, the issue was more that sex without a condom and having multiple partners are stigmatised. As these issues are often not discussed frankly with gay friends and peers, it would be difficult to talk about PrEP.

“I have never discussed anything like this and I don’t think we would because we only tell to each other that we have safe sex.”

In many friendship circles, there was little discussion of sex. Just as men do not discuss HIV status or erectile dysfunction, they would not discuss PrEP.

“I know some guys wouldn’t want to talk about it. I know one guy who will be at [name of club] with things up his arse and he won’t even talk about anything to do with his arse.”

Other interviewees identified friends who already talked about sexual matters and with whom it would be natural to discuss PrEP.

“I think they probably would [talk about it] yeah. I mean we’re all pretty open about what we get up to and sex generally. Friends… you know… friends are open about their HIV status generally so…”

Moreover, several felt that the value of PrEP would be recognised.

“I don’t think in the community there would be a stigma. I don’t think I’ve ever heard someone say ‘you’ve taken the hepatitis vaccine? How horrible is that? Can you believe it? You’re such a slag!’. So no, I don’t think there would.”

And while many participants discussed stigma, most insisted that it wouldn’t make a difference to their own choices about using or not using PrEP. But it would shape their decisions to discuss PrEP with people they knew. This would make it harder for people to learn about PrEP from their peers.

Finally, interviewees also raised concern that the media and other figures in the wider society could spread inaccurate information about PrEP and wrongly influence the public agenda on PrEP, having an impact on other men who might need PrEP or on the NHS policy on PrEP.

“I’m really concerned about negative spin in the press... These things really concern me because we need… a third option. Whether PrEP is a little bit effective or a lot effective we still need it...”

References

Nutland W. The acceptability of pre-exposure HIV prophylaxis in men who have sex with men in London. Doctor of Public Health thesis, London School of Hygiene & Tropical Medicine, University of London, 2016.

A second aidsmap.com article describes other findings from this study.