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Dec02

HIV prevention and the gay community

Friday, 02 December 2016 Written by // Guest Authors - Revolving Door Categories // Social Media, Gay Men, Sexual Health, International , Living with HIV, Revolving Door, Guest Authors

Do we need to rethink HIV prevention in the UK and elsewhere? And is PrEP the answer? FS Magazine surveyed over 1,500 gay men about the current state of HIV prevention... here's what they had to say.

HIV prevention and the gay community

This article previously appeared at FS Magazine, here.

It’s been 35 years since the first cases of AIDS were reported. In that time we have seen millions die from the virus. In the late 1980s the UK government rolled out the ‘Tombstone’ adverts – a campaign to drive fear about just how deadly the virus was. In the mid 1990s a breakthrough in medication meant that HIV changed from being a ‘death sentence’ to becoming manageable. Today, HIV treatment means that HIV need no longer be a death sentence and someone with the virus, who has access to medication, has a normal life expectancy. What’s more, we are increasingly confident that someone who has responded well to HIV treatment cannot pass the virus on to their partners.

Despite all of this, the numbers of gay men who are infected with HIV in the UK each year is not going down. Do we need to rethink HIV prevention? And is PrEP the answer? We surveyed over 1,500 gay men about the current state of HIV prevention and asked them what they really think about current campaigns, PrEP and what needs to be done. Here’s what they had to say...

Jason is 27 and from Peterborough. He thinks the current state of HIV prevention is poor and more needs to be done.

He told us: “It doesn’t have the impact it used to, due to the attitude that medication is getting better and people seem to think that you’ll take a few pills and it will be OK! The added craziness that PrEP is not available is ridiculous, especially with the rising number of diagnoses in the UK among gay men.”

David, who is 40 and from Birmingham, agrees: “It’s lacking. Especially younger guys who don’t remember AIDS from the 1980s and many seem happy to bareback.”

Joshua, 30 from Leeds, told us he thinks the current funding cuts are not helping. “We need to get on top of HIV infection rates. Sexual services and the great prevention work they do are under threat due to cuts.”

Tim, 51 from Doncaster, had a lot to say. He told us: “It’s abysmal! Coming out in the early 80s caused me so much extra stress due to the Gay=AIDS mentality at the time. I can remember my flatmate asking if I could use my own cutlery in case he ‘caught something’. Even now I still don’t mention my HIV status (even to very close friends) because people still make assumptions or ask questions you really don’t want to answer or make you feel uncomfortable. Anything that can prevent someone experiencing those feelings HAS to be given freely.”

Ali, 29 from Birmingham, told us: “There needs to be more work and awareness about gay sex in schools and colleges. There need to be stands at Gay Pride. Gay bars and saunas should have someone on hand to offer advice or testing. There is not much being done on social media or gay apps. So many negative men are uneducated about what undetectable means, and the difference between HIV and AIDS.”

And Alex, 22 from London, said: “I feel that it’s unrealistic to expect young gay men to only have protected sex – it simply won’t happen all the time. Often gay men are demonised for having unprotected sex, yet heterosexual unprotected sex happens just as frequently – as evidenced by high rates of teenage pregnancy. We need a more effective intervention, which in my opinion is PrEP, to tackle HIV prevention. That’s not to say that the use of condoms should not continue to be a huge area of health promotion, because we need to offer gay men a range of options to empower them to make decisions about their sexual health.”

Ian Howley, Interim CEO of GMFA responded to the comments. He told us: “The theme running through these comments is that not enough is being done, that funding cuts are impacting HIV prevention and that younger gay men are less aware about HIV and STIs. The fact that the majority of gay and bisexual men who responded to this survey feel like this should not be ignored.”

HIV campaigns

So what about current HIV prevention campaigns? Are they effective? Do gay men see them, react to them?

We asked: How many of theses HIV prevention campaign you remember seeing? (tick all that apply)

It Starts with Me

60%

HIV Testing Week

53%

HIV Aware

33%

Stop AIDS

23%

More to Safer Sex

23%

Think Again

20%

Do it London

10%

HIV Laid Bare

5%

Just Carry One

4%

We asked: Do you think current HIV prevention campaigns are intended for people like you?

Yes

49%

No

26%

I don't know

25%

What about the guys who feel these campaigns are for them? Harry, 22 from Birmingham, said: “I’m a young gay man, and most awareness campaigns seem to feature men like me. I’m not sure I’d feel this way if I was older.”

Dave, 24 from London, told us: “A lot of the campaigns seem directed at people who have no knowledge or have uncertainties around HIV and either the facts or the stigma. In my case I’m fully aware of the information but it’s about managing myself. Part of why I have unprotected sex is that I sometimes have a huge lack of self-esteem and turn to substances, so that when someone comes along I lose any self-control, and go with what they want.”

Kristian, 25 from Swansea, said: ‘‘People have this idea that ‘it won’t happen to me’ (which I used to believe) and I think these campaigns in particular refer to me.”

And of those who didn’t feel like they were for them, Jack, 26 from Newcastle, said: “I’m living with HIV and I feel these campaigns generally are targeted at HIV-negative men, even though I think people living with HIV have a huge role in HIV prevention. I would like to see more campaigns aimed at me that give me the tools to help stop HIV.”

Simon, 33 from London, told us: “I think a lot of the current campaigns are soft and don’t really say anything. I look at happy smiley people saying ‘I’m testing’ and I think to myself... Really? Are you really testing? Probably not. You’re a model who turned up to a shoot and got paid to smile into a camera. It’s just not real and lacks motivation.”

Raz, 21 from Bradford, agrees: “I just don’t connect with any of the images I see. Being Asian I rarely see people like me in campaigns and when I do it’s normally aimed at straight couples. I would like to see more diversity.”

And Philip, 42 from Surrey, said: “A lot of the current campaigns are aimed at younger generations, which is fine, but I feel our generation is left out.”

We asked: Do you feel the information provided to you from HIV and sexual health campaigns help you to make informed decisions?

Yes

47%

No

11%

Sometimes

33%

I don't know

9%

When we asked why/why not:

Jamie, 49 from London, told us: “I find a lot of the information a bit vague and contradictory. For example, reducing your number of sexual partners is contradicted by information that most HIV infections come from regular partners. We get repeatedly told that condoms are the best way to avoid HIV transmission when studies show PrEP and treatment as prevention (TasP) are much more effective. Generally, information on TasP is a complete muddle. I realise this is because the science is fast-changing, but you end up having to guess what’s the best thing to do.”

Bob, 40 from London, said: “I’m still confused about oral sex and HIV. Is it safe to swallow or not? I’ve had conflicting information about this, even from sexual health clinics.”

Rufus, 52 from London, told us: “Sometimes more specific detail is needed – which I realise can’t be done with the majority of sexual health campaigns.”

Adrian, 41 from Solihull, said that having fast services has given him control. “I know all there is to know about transmission risks and behaviour. The most helpful development recently has been the advent of self test kits, especially Fastest, which allow me to actually check my status conveniently without time off work visiting inaccessible clinics. Actually knowing my status with certainty helps me manage and avoid unnecessary anxiety, which in turn helps me focus on living a healthier life and managing my depression.”

And Michael, 37 from London, told us: “Not enough detail is given to make an informed choice. They focus on one simple message, but the one size fits all approach is failing lots of people who simply opt out.”

PrEP and the gay community

You would have to be living under a rock not to have noticed all the fuss over PrEP. For those still don’t know what PrEP does, it’s a tablet that works to stop HIV transmission. If taken daily it can stop you from becoming HIV-positive. At the moment PrEP is not available on the NHS, but this hasn’t stopped gay and bisexual men from using PrEP. Many buy generic PrEP from online chemists.

For many, PrEP is the game changer in HIV prevention, but others feel it will lead to an explosion of bareback sex and higher rates in STIs. We decided to ask everyone who responded to our survey about their thoughts on PrEP.

We asked: Do you know what PrEP is?

Yes

79%

No

10%

I've heard of it but not sure how it works

11%

When then explained what PrEP is and asked: Would you use PrEP if it was available on the NHS?

Yes

68%

No

15%

Don't know

17%

When asked why/why not:

Adam, 38 from London, said: “It would provide an extra measure of prevention, in addition to condom use.”

Jason, 27 from Peterborough, told us: “It would be a great precautionary measure. No matter how careful you are there’s always the chance you may get a bit too drunk or want to please someone so much that you give in and go unprotected. Why would the NHS not want to fund this!!!”

David, 40 from Birmingham, isn’t too keen on it. He said: “I would want more reassurance than that before I stick drugs in my body, just so I can have a fuck with a nicer ending.”

John, 28 from Surrey, doesn’t think the NHS should pay for it. “If it can help reduce risk and the spread of HIV, then it’s worth taking as long as there are no side effects. I wouldn’t mind paying for it because it’s my choice to use it. I don’t expect the NHS to pay. They can pay for PEP instead.”

JJ, 40 from London, said: “Condoms are cheaper to the NHS and more effective. Don’t waste public money.”

And Przemek, 29 from London, told us: “I think it’s irresponsible to take drugs with unknown long-term side effects just to have unprotected sex, especially when using condoms is cheap and easy, and protects you from HIV.”

We asked Ian Howley of GMFA for his thoughts. He said: “I can understand why lots of gay and bisexual men have mixed feelings about PrEP. The current studies show that PrEP is more effective than condoms at preventing HIV transmission. Anyone on the medication should be monitored on a frequent basis and tests carried out to keep an eye on their health and ensure that any STIs are diagnosed and treated. We should also note that not all gay and bisexual men will use PrEP and of those who do, most won’t take PrEP for long periods of their lives. PrEP is a breakthrough in HIV prevention and we need to utilise it.”

Seeking info

In a previous FS survey we asked over 1,000 gay and bisexual men about where do they find sexual health information. 75% told us they go online. For this issue we asked the 1,500 men who responded to this survey which sexual health websites they have visited in the past year:

We asked: Have you ever visited any of these HIV/sexual health websites in the last year? Tick all that apply.

www.nhs.uk

59%

www.tht.org.uk

55%

www.gmfa.org.uk

43%

www.fsmag.org.uk

24%

www.startswithme.org.uk

19%

www.nat.org.uk

14%

www.hivaware.org.uk

12%

www.avert.org.uk

6%

www.man2man.ie

5%

Other

4%

It’s all well and good asking people what they have or haven’t seen, or what they think needs to be done, but what do gay men think they need more information about?

We asked: Which of the following topics would you like more information about? Tick all that apply.

Info on PrEP

64%

Info on PEP

50%

Info on bareback sex

48%

Info on HIV testing

37%

What to do after having unprotected sex

36%  

How to discuss safer sex with someone who has a different HIV status

34%

How to prevent HIV

34%

Sex with multiple partners 

33%

Information on hep C

32%

STI testing

31% 

Chemsex

25%

Condoms and lube

21%

How to discuss safer sex with someone who has the same HIV status as me

20%

What does this tell us? Ian Howley, Interim CEO of GMFA told us:

“HIV prevention has changed a lot over the past 35 years. We are now at a stage where studies have shown that someone living with HIV and on medication cannot pass on HIV. We are also at a stage where we have a wonderful new tool called PrEP and the fact 64% of the gay and bisexual men who responded to this survey want more information about it shows they need more than a one size fits all approach to HIV prevention.

“The need for information on PrEP, PEP, how to make bareback sex safer, and the general discussion around talking about safer sex shows what gay and bisexual men are looking for.

“Everyone is different and we need to meet gay men where they are at and not where we think they should be. At GMFA we have over one million visitors to our website each year. Those coming to the site are looking for information on how to have the best sex with the least possible risk. We also provide up-to-date information on PrEP, PEP, being HIV-undetectable, what to do if you’ve put yourself at risk, as well as practical info on condoms and lube.

“We’re in a new era when it comes to HIV and we all need to work together to make sure that we supply the information gay and bisexual men are looking for. But unfortunately we are in a time where spending on HIV prevention has been cut year-on-year, donations in the sector as a whole are down and we are seeing charities close. Something needs to be done.”

This article previously appeared at FS Magazine, here.

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