Magazine News & Features PrEP: the battle against stigma By Stuart Haggas | @workofstuart “I met a hook-up and while being fucked the guy asked if I was HIV-negative, so I said I’m negative and on PrEP. He stopped fucking me and said I was a slut for taking that.” - Juneid, 26, south east England. In October 2018, the gay media reported that a man from San Francisco who was taking PrEP became HIV-positive, even though he was taking it correctly. You could hear the cries of gay and bisexual men on social media who used this one case to back up their opinion against the use of PrEP. In fact, just over 7% of the 756 men we surveyed said that PrEP should not be available on the NHS. When taken correctly, PrEP is proven to be 99% effective against HIV. Who’d have guessed that the invention of a pill that can prevent HIV would cause such controversy? But that’s exactly what’s happened. So divisive is the very concept of PrEP that it splits opinion, even within the gay community itself. PROJECT FEAR FS asked 756 gay and bisexual men for their thoughts on PrEP. The results show a rift between the opinions of those who are taking PrEP and those who oppose it. 39% of respondents said they are taking PrEP and 58% said they aren’t taking it. The men surveyed who are on PrEP described a variety of reasons why they’ve chosen to take it, but the predominant reason is to reduce the risk of contracting HIV – a decision often fuelled by fear. “I had become newly single after a long term monogamous relationship and I was worried about HIV,” says Hayden, 34 from the Midlands. “My friend contracted HIV through a condom splitting and I was scared,” says Sam, 21 from Wales. “I take it to have an extra protection in my sexual life,” says Robert, 36 from London. “I was always afraid of broken condoms during sex. Now I feel more confident and concentrate on sex and not on my fears.” “I wanted to stop feeling afraid every time I had great sex with a stranger that there was still a small chance of contracting HIV,” says Alex, 35 from south west England. “As a mostly passive man, I wanted to feel safe,” says Derek, 56 from London. “Growing up as a gay man, one of my biggest fears has always been contracting HIV,” says Rich, 36 from London. “It’s a big weight that’s been lifted off.” “I had worried about HIV for all my adult life and wanted a rest from that anxiety,” explains Lee, 51 from south-west England. “Shortly after I started on PrEP, I had a positive partner for a year, and it helped me relax into that relationship, although as well he was undetectable.” “I still use condoms a lot of the time with casual hook-ups but PrEP gives me extra reassurance,” adds David, 47 from London. “Also it allowed me to stop using condoms earlier that I would have otherwise with my regular partner.” “Sex was so wrapped up with anxiety around HIV,” says Richard, 33 from London. “I wanted to break that cycle.” Of the men we surveyed who are taking PrEP, 65% say their sex life has improved, and 32% say their sex life has remained the same. None said their sex life has got worse because of PrEP. PROMISCUOUS BOYS Of the gay and bisexual men who voiced their objections to PrEP, some have a very different impression of those who take PrEP, using words like ‘promiscuous’ and ‘lazy’ instead of ‘fear’ and ‘anxiety’. “PrEP is fantastic but I feel that people are only on it to be promiscuous without risks and abuse it,” says David, 27 from London. “People need to understand that there are still other STIs that can be transmitted. Cheap thrills are all the rage now.” “I’m not convinced about it working and being effective,” says Henry, 21 from London. “It seems like a lazy excuse for gays to just go around and fuck bareback and pretend everything’s fine because they’re on PrEP.” “I believe it encourages unsafe sexual practices, and ignores the fact that although you are protecting yourself from HIV, you are exposing yourself to a variety of other diseases and infections,” adds Paul, 39 from London. “People need to act responsibly and not expect the state to fund their reckless sex life,” says Joe, 50 from London. “We really need to stop slut shaming each other”, says Ian Howley, Chief Executive of HERO – Health Equality and Rights Organisation. “Calling each other lazy, irresponsible or promiscuous does nothing to stop the spread of HIV. It only takes one sexual encounter for HIV and STIs to be passed on. “People don’t stop having sex because of being slut shamed. They are just more likely to hide their sex lives from their friends or potential partners and think twice about how they interact with health advisors. Slut shaming does not prevent HIV”. NEGATIVE REACTION Many of the men we surveyed who take PrEP acknowledge that they’ve faced similar negative reactions. “A friend saw my status ‘negative on PrEP’ on Grindr and contacted me saying they were concerned about me as a result,” says Rob, 35 from south east England. “I had to explain in detail how taking PrEP is a responsible action and doesn’t imply that I am taking sexual risks. It’s the opposite in fact.” “I had an argument with my friend. I was on the Proud Study and he felt I was wasting NHS resources,” says Adam, 45 from Yorkshire. “A guy I was dating assumed I was promiscuous and too experienced for him because I said I was on PrEP,” says Mark, 30 from London. “I’ve argued with friends that PrEP does not automatically mean you are promiscuous.” “I think there’s a huge amount of judgement and slut shaming wrapped up with PrEP,” explains Richard, 33 from London. “I feel it’s got much better in the last year but when I first started PrEP people were quite judgemental. ‘Taxes shouldn’t fund lifestyle choices’, ‘it’s untested and you don’t know what you’re putting in your body’, ‘just use condoms’, ‘it’s bareback and a selfish lifestyle choice’. That makes me so angry. The reactions made me more open about being on PrEP as I really wanted to challenge some of the stigma. My big argument to those who say it’s just promoting other STIs, is that no one is saying ditch condoms.” “The stigma around PrEP is strong,” admits Chris, 35 from London. “I try to educate, but it’s difficult to persuade someone you’re not just a slut.” PrEP SURVEY RESULTS WE ASKED: Do you take PrEP? 39% said yes 58% said no 4% didn’t know what it was. Those who take it said how they got PrEP: 49% are on a trial 35% buy it online 5% buy it from a clinic 5% have a private prescription. How do you take PrEP? 77% take one pill a day consistently 14% do event-based dosing 6% take one pill a day but with breaks for short periods. PrEP CELEBRATION Greg Owen is co-founder of iwantPrEPnow (IWPN), a website which facilitates the safe purchase of genuine generic PrEP online. “It doesn’t matter what an individual’s motivations for starting PrEP are, we need to celebrate that decision and support those people,” he says. “PrEP does exactly the same thing for every person who takes it as directed, it prevents them from acquiring HIV. This is a huge advancement. We need to keep coming back to this. PrEP works. If we had a cure or a vaccine for HIV, I’m pretty sure people would celebrate that. So I try to encourage people to look at PrEP in the same light. “Once we deviate from that it becomes about judgements and shaming. As gay men we all know only too well what it feels like to be judged and shamed by a heteronormative society. It’s damaging and unnecessary and we all need to take steps to be kinder to one another. For some people PrEP will offer them peace of mind which they might never have known, for others it will offer the freedom to be a fabulous slut without the fear of acquiring HIV. Both are equally valid.” “For 30 years gay men have been scared and fearful of sex,” adds Marc Thompson, Strategic Lead for Health Improvement at Terrence Higgins Trust, and co-founder of www.prepster.info. “This has continued to fuel stigma. In fact I believe it has had a negative effect on HIV prevention. Fear and shaming has never successfully worked to reduce HIV. I remember a time when people said not even condoms were good enough and we should stop having sex altogether. “So, I think we should celebrate those men who have made the decision to take control of their sexual health and HIV prevention needs. We need a lot more positive messaging around PrEP and its impact on reducing men’s anxieties around sex.” CONDOMS, CONDOMS, CONDOMS Other arguments against PrEP are that it’s a lazy, cowardly and unnecessary alternative to using condoms, that it only prevents HIV whereas condoms prevent a whole range of STIs including HIV, and that there are also questions about whether it still works against new strains of HIV. “I don’t need it. Condoms and safe sex practices are sufficient for me in my circumstances,” says David, 32 from Republic of Ireland. “I will not dictate to others what is best for their circumstances. I frankly resent constantly being berated by PrEP advocates who do not respect my choice for what’s best for my circumstances.” “People should be responsible for their own sexual health and the practice of using condoms where necessary. Surely taking PrEP will make people become lazy and open to more infections?” asks Lawrence, 45 from the Midlands. “Unprotected sex is a game of Russian roulette. PrEP will just make more play it,” says Andrew, 45 from the Midlands. “I’m worried about the long-term side effects of taking it, and the fact that most guys I know that take it seem to think they are immune to any other STI,” says Steve, 44 from south west England. “I’d worry it makes people lazy about other STIs and they might have them but because they are on PrEP they think they are untouchable.” “What’s the point? If I have unprotected sex I’ll still suffer from the anxiety about getting syphilis and any other number of STIs,” says Wex, 44 from Republic of Ireland. “It just encourages unsafe sex,” says Michael, 45 from Scotland. “It might provide protection against one thing, but not against anything else.” “I’m worried it encourages bareback sex and the spread of other STIs,” says Alex, 31 from Scotland. “In the long term, will poor usage encourage HIV resistance? Also, I’m not comfortable with the mass-medication of otherwise healthy gay men.” “PrEP works to date. There are new strains of HIV developing all the time. There is no guarantee it will work in the future,” says David, 32 from Republic of Ireland. “PrEP encourages condomless sex. This is a dangerous practice.” “What’s not responsible about wanting to prevent HIV?” says Ian Howley. “One of the most common responses we hear at HERO is that gay and bisexual men on PrEP are not being responsible. Those who are on PrEP are being responsible. They are stopping the spread of HIV within the gay and bisexual communities. We should be applauding them, not shaming them. “We also hear all the time that PrEP does not prevent other STIs, but how many gay and bisexual men use condoms for oral sex? Gonorrhoea, syphilis, chlamydia to name a few can all be transmitted through oral sex. Of course we need to do more to increase gay and bisexual men’s knowledge of STIs, but personally I’d prefer someone was diagnosed with gonorrhoea, which is curable, than HIV.” Ian continues: “There’s a stigma associated with PrEP that we don’t see with any other medication, most likely because it’s linked to sex and lots of gay men still have hang-ups and shame associated with the type of sex that they are having. But because PrEP is 99% and not 100% effective and because it doesn’t stop other STIs, for many that’s enough for them to stop anyone from using it. That’s irresponsible.” “I often use a seatbelt analogy here,” says Greg from IWPN. “A seatbelt won’t protect you from developing cancer, it’s not designed to do that. A seatbelt is designed to help protect you should you have a driving accident. It does that very well. We wouldn’t stop using seatbelts because they don’t stop cancer too – so why would we dismiss a tool that works almost 100% against HIV just because it doesn’t work to protect us from 100% of STIs. And nearly all other STIs are curable. For context and clarity, transmission rates for other STIs have been rising steadily for the past 20 years. Now because we have PrEP, HIV rates don’t have to rise too, and in fact we are already seeing significant drops in new HIV diagnoses in most regions with adequate access to early start treatment for HIV and free or affordable access to PrEP.” “Transmission rates for HIV are actually falling, at a dramatic rate,” adds Marc. “And the evidence suggests that Treatment as Prevention (a person with HIV getting onto treatment and becoming undetectable and therefore not able to pass the virus on) and PrEP have had an impact.” PrEP SURVEY RESULTS WE ASKED: Have you ever had a negative reaction from someone because you take PrEP? 33% said yes 57% said no 9% were unsure. Have you had any of the following arguments directed at you against the use PrEP? 78% - “PrEP doesn’t prevent against other STIs” 48% - “People should just use condoms” 43% - “PrEP means you’re a ‘slut’” 27% - “PrEP is expensive and shouldn’t be given to gay men on the NHS” 10% - “Taking PrEP means you don’t care about your health”. PEP TO PrEP Some guys explained how they’d previously taken PEP, which influenced their decision to now take PrEP. “I had ended up rushing to the clinic for PEP a number of times following various accidents with condoms breaking or slipping off,” explains Andy, 55 from London. “I am mostly a bottom and I finally decided PrEP would help me feel more in control and less dependent on the top using the condom.” “Me and my partner were going on holiday. We’ve previously had a scare when on holiday, and were unable to access PEP at all,” says James, 28 from Scotland. “We got PrEP to act as a safety net for when we were abroad, and have stayed on it since.” Other men we surveyed described how PrEP is particularly beneficial to them when travelling abroad. “I travel the world for work and as a single gay man have needs like any other,” says Gareth, 54 from the Midlands. “I visit some places that are higher risk than others and have had occasions where things didn’t go the way they should, so this is a second line of defence against accidents and occurrences.” “Holidays = alcohol, big nights with lots of men,” adds Rob, 44 from south west England. “It’s not a question of if but when sex becomes something that can happen. In an unknown place with drinks I wanted to make sure that I’m savvy about HIV.” HIV STIGMA The FS survey included input from HIV-positive gay and bi men about their opinion on PrEP. 44% of these men believe that PrEP reduces the stigma around HIV. “People seem better educated about HIV since PrEP and PEP came into existence. People understand what undetectable means,” says David, 41 from London. “As a result, the number of people showing concern about my status has reduced significantly.” “People have become more aware of undetectable and what that means,” agrees David, 32 from London. “They are also aware of the different protection tools out there and are more educated.” “PrEP, and at the same time U=U, has made us talk more about HIV than we have in years,” says Tom, 32 from London. “Positive people are more likely to be open about their status if people are clued up about PrEP,” says Andrew, 34 from the Midlands. “It takes the fear factor out of sex.” “People with HIV aren’t seen as plague bearers as much any more,” says Jack, 21 from north west England. “Those on PrEP seem to be less concerned by the idea of a partner with HIV,” adds Tom, 36 from London. “That said, I’ve met some people on PrEP who view it as an extra safeguard in case they sleep with someone who has HIV, but still won’t sleep with someone who revealed a positive HIV status.” However, 33% worry that PrEP encourages further HIV stigma. “I think U=U has done more for us than PrEP, sadly,” says Max, 26 from London. “A lot of the discourse around PrEP is about sexual ‘responsibility’ – but that’s been used to stigmatise those of us with HIV as ‘irresponsible’ for decades, and now PrEP merely adds to that.” PrEP SURVEY RESULTS WE ASKED HIV-POSITIVE MEN: Do you think PrEP could have prevented you from getting HIV? 80% said yes 10% said no 10% were not sure. Do you think PrEP has helped reduce stigma around HIV? 44% said yes 33% said no 23% were not sure. PrEP INEQUITY Of the gay men we surveyed who are not on PrEP, the main reason for this actually isn’t because they’re opposed to it. More often it’s because they couldn’t get on a trial and/or can’t afford to buy it for themselves. Respondents told us why they currently don’t take PrEP. 31% can’t afford it, 30% can’t get on a trial, 20% are worried about STIs, 16% worry about health consequences, 8% don’t agree with PrEP and 2% don’t believe it works. “I have concerns about the current inequity of access to PrEP in the UK,” says Greg from IWPN. “The England PrEP Impact Trial is turning away some gay and bi men because there are not enough trial spaces available. Some of these men have needlessly acquired HIV as a result.” “This really makes my blood boil and is totally unacceptable,” adds Marc from prepster.info. “One person not getting a place on the Impact Trial or not being able to afford to buy PrEP themselves is potentially one new person infected with HIV. That’s a huge burden for the individual, and a lifetime cost to the NHS. We need to keep up the pressure on NHS England to commission PrEP across England as soon as possible. And we must collectively find ways to support those who are really vulnerable and at risk of acquiring HIV to make sure no one is left behind.” “People who need PrEP but who cannot afford to buy it for themselves and are on no income or benefits might be eligible for PrEP through Terrence Higgins Trust’s PrEP Access Fund (PAF),” Greg continues, “which launches in late 2018.” FREE ON THE NHS? Perhaps unsurprisingly, almost everyone (93%) we surveyed who takes PrEP believes it should be free on the NHS. “It should be free because not everyone can afford it,” says Matthew, 50 from south west England. “And it’s about equality of choice. Plus I’m sure it will save the NHS a lot of money in the long term not having all the other complications of people who have HIV to treat.” “Currently it’s just the lucky few who managed to get places on the trial, or the people who can afford it,” says John, 29 from London. “It is proven to reduce HIV infection,” says Matthew, 43 from London, “and regular clinic appointments means more frequent testing for other STIs.” “It is a preventative medication that saves lives and will end up saving much more money in the long term,” says Karl, 39 from London. “It will reduce the number of new HIV cases and will reduce the NHS cost in the long term,” says Dave, 52 from south east England. “And it will give peace of mind and quality of life to those taking it.” “We should protect members of our society from disease,” says Mark, 38 from London. “The arguments against PrEP are very similar to the arguments against the pill, which allowed women to take control of their sexual and reproductive lives. Those arguments were essentially misogynistic and sought to control women’s sexuality. Arguments around PrEP are homophobic.” “People might only take PrEP for a short period of time,” adds Adam, 45 from Yorkshire. “The overall cost of this will be less than having to take HIV meds for life.” HIGHLY RECOMMENDED 99% of the men we surveyed who are taking PrEP said they’d recommend it to others (just two people were unsure) – which is a huge endorsement. “The advantage to have sex (not condomless, not bareback, JUST sex) the way nature intended, without fear, worry and anxiety is surely a great thing,” says Marc from prepster.info. “Gay men have so many things that might play on our minds about the sex we’re having (shame, taboo, can I still do this position, did the water run clear, what time does Bake Off start?), but it’s a relief that HIV no longer has to be one of them.” “In my opinion, there are very few if any disadvantages of taking PrEP,” says Greg from IWPN. “PrEP is revolutionary. We are the first generation of people with the tools available to stop and end new HIV transmissions. We all have our part to play in helping to end this epidemic – but the epidemic does not end when we end new transmissions. Those of us already living with HIV will live with it for life, and therefore ending HIV stigma is as important as ending new transmissions.” PrEP SHOP Men in England who wish to take PrEP, but can’t get on the NHS Impact Trial, have no choice but to source and buy it themselves via the internet. But how can we be sure that what we buy online is safe and genuine? “There is no risk involved with buying PrEP online through IWPN’s listed sellers,” Greg confirms. “56 Dean Street ran more than 300 tests on drug signposted by IWPN and there were no fakes. We actively signpost to our preferred seller as we have a longstanding working relationship with them. Their drug has also been tested with no fakes found. We have documentation of their supply chain, from manufacturer to customer. We have put as many safeguards in place as possible. But again, while self-managed PrEP use exists outside of a proper NHS provision, we have no way of ensuring people get the support and monitoring they need, or any wrap around services they may require, and we don’t have comprehensive and robust data on PrEP use in the UK.” THE PROBLEM WITH PrEP So, what is the problem with PrEP? Why is there stigma around a pill that, ultimately, prevents HIV infection and can save lives? “Homophobia, stigma about sex, and the very British attitude not to view sex as a pleasure have all had an impact,” explains Marc from prepster.info. “Gay men have even internalised this, hence the slut-shaming.” How can we overcome that stigma and slut-shaming? “It’s great that so many gay men are choosing PrEP and once again taking control of their own HIV prevention needs. But more needs to be done,” Marc adds. “We must continue to raise awareness among gay men that PrEP works, and that it could be for them or for one of their mates. We need to make sure those men in our community who are more vulnerable to acquiring HIV or are disproportionately affected by HIV (black gay men, all young men, and those whose first language might not be English) have all the tools, information and resources to access PrEP if and when they need it.” “Is this about more than PrEP? Honestly, yes. Let’s break it down,” says Greg. “A lot of gay men are very clued up when it comes to HIV prevention and sexual health. A lot, but not all. Stigma and knowledge around HIV, other STIs, and sex in general vary and in some cases are much poorer among certain types of gay men. In my opinion there is still a stubborn, heavy stigma about gay sex from both outside and within our community. Shame plays a huge part. “Ultimately, we are a community living in the shadow of a devastating and traumatic chapter in our history (AIDS). With PrEP and undetectable, we are asking people to unlearn everything they ever learned in a climate of fear, infection and death. We are asking people to learn the new science and the new facts, and oftentimes, change or something new can stir deep emotions and reactions. It requires us all to use the basic components of constructive debate, which are respect, compassion and kindness. It will require us to listen and be open to learn. It will be uncomfortable but it needs to happen.” Find out more about PrEP at www.gmfa.org.uk/prep. Find out where you can get PrEP at www.iwantprepnow.co.uk You can also find out more information about PrEP at prepster.info.