community

Gay men, it's time to educate yourselves about what HIV-positive and undetectable means

With appropriate treatment, you cannot pass on HIV - but the stigma surrounding the virus remains, according to those living with it.

2019-09-16

This article was first published in 2017.

Words: Chris Godfrey

"We were on a date and having some dinner and it just came to the point of disclosure, where I tell him. So, I said ‘yes, I'm positive, I'm undetectable’.

"His face changed completely. It was so painful to see how his face reacted. It hurts. He started with the questions: 'Are you a promiscuous boy? With how many boys have you had sex? How did you get it?' He wasn't informed about anything at all."

Craig’s experiences will resonate with a lot of HIV-positive gay guys. On account of avoiding more exposure to the stigma associated with being HIV positive he has asked to use a pseudonym.

Having been on three dates, he made a judgement call about the guy he was seeing, that disclosing his HIV status would be fine, that he would be safe from prejudicial attitudes and that his date knew what it meant to be HIV and undetectable. His trust was misplaced.

“I learned a lot off that experience,” says Craig, reflecting on his date’s dismay and incredulity.

“It's not a big drama, it's not a big thing for me. Why do I have to tell him, that I'm undetectable and I have HIV… when I know he's going to be safe with me.”

Craig’s status should have made minimal – if any – difference to their relationship. He is undetectable, so the HIV virus has been suppressed so much by antiretroviral therapy that monitoring tests can no longer detect traces of it in his blood.

Studies have shown that when this is case the chance of transmitting the virus to a sexual partner is heavily reduced – often by as much as 96%.

The recently published PARTNER study found no linked HIV transmissions between 1166 sero-discordant couples (where one is HIV negative and one positive). This is after they had sex 58,000 times without a condom.

The implications are clear, and yet in 2016 too many gay men still don’t get it.

“I've not spoken to one guy who's been negative who knew what undetectable meant,” says 44-year-old Russell Cutler, recounting his experiences on dating apps.

“On the occasions I've explained it to them, it hasn't made any difference at all. I'm surprised by some of the gay guys: ‘oh you're spreading Aids, you're doing this that and the other, you shouldn't be on there.’ All that kind of stuff.”

Russ Cutler: "“I've not spoken to one guy who's been negative who knew what undetectable meant".

Cutler has been a gay scene stalwart for 25 years and even had a best friend who was openly HIV positive, but it wasn’t’ until Cutler received his own diagnosis in August 2014 that he became familiar with the term ‘undetectable’.

“It's not like I just came out and I'm new to this information,” he says. “That for me screams the fact there's no information there or it's not available enough or it's not publicised enough.”

In October 2015, FS magazine conducted a survey of more than 3,100 gay men about attitudes towards sex with HIV positive guys. It found that nearly half (49%) of all gay men didn’t know what HIV-undetectable meant, while 44% said they would not have sex with an HIV-positive man.

Of those surveyed, 84% said their status was negative; when the term ‘undetectable’ was explained to them, one third of those who previously said they wouldn’t sleep with an HIV positive man changed their stance.

Cutler believes those of the older generation, who lived through the Aids crisis, are too afraid to talk about it.

“It is a bit of a taboo subject…especially for older people,” he says.

“I'm 44 and people my generation will remember the scare mongering and that still goes on today. People do feel uncomfortable talking about it. So in the last six months, when I got back to being my old self and you start to appreciate what it does mean, I always try and explain and advise or educate anybody.”

For the generation which didn’t live through the epidemic, there’s a complete lack of exposure to accurate, cogent information about HIV, both in schools and from the media.

In the FS magazine survey, 71% of 18 year olds and under said they wouldn’t have sex with an HIV-positive guy – the highest number by quite some margin (59% of 18-24 year olds being the nearest).

“A lot of the older guys I chat to, they tend to be fairly coy with [undetectable], I think the ones who are more poz-phobic are those who are maybe in their twenties,” says Bruce, who was has been living with HIV for 23 years.

Since his diagnosis, he’s had three long-term relationships lasting between five and eight years each. All of those partners are still HIV negative.

Bruce: "I think the ones who are more poz-phobic are those who are maybe in their twenties."

When interacting with guys on dating and hook-up apps, he’s often found himself having to explain to people what it means to be undetectable. In his experience, the younger generation’s propensity to avoid sex with HIV positive guys is putting them at more risk then they realise.

“They would probably still play with somebody who's not had a test for a long time and maybe isn't clear on their status,” says 46-year-old Bruce Chambers.

“If somebody is positive and on treatment and they come back undetectable every time, then they are probably a safer bet than somebody who was negative at their last test, but haven’t had one for a while. And older guys seem to grasp that better.”

With HIV diagnoses still rising (in 2014 there were 6,151 new diagnoses, up from the 6,032 in 2013), current prevention strategies are failing. While this includes interventions led by the government and by some HIV charities, it's likely that the increasing rates are being fuelled by ignorance around what is and isn’t safer practice.

“Their protection is not wanting to deal with people who have HIV, because they think they're having safe sex when they're not,” says 28-year-old Joshua, a London-based software engineer.

After experiencing a mixture of responses from those he disclosed his status to on a person-by-person basis, he eventually decided to be open about his undetectable status to everyone – allowing him to filter out those who weren’t comfortable.

“For me it was like a journey, of owning my status,” says Joshua. “Now I just tell everyone; it's out in the open and if they want to talk about it they can.

"I've had some really interesting conversations because of it, but I've also felt like I got on well with a guy on a date and so I've told him afterwards, and then he'd freak out, or on other occasions I haven't said anything afterwards and it's either fizzled out or we didn't feel the same about each other anyway – then I'm glad I didn't put myself through that awkward situation.”

Joshua: “Their protection is not wanting to deal with people who have HIV... they think they're having safe sex when they're not.”

While it’s clear that a significant proportion of negative gay men remain woefully uninformed about being HIV and undetectable in 2016, their ignorance is primarily a result of society’s systemic failure to educate them.  

In schools, the sexual health education offered is wholly inadequate and just a few months ago the government announced it would be keeping that way, refusing to introduce a compulsory, LGBT-inclusive Relationships and Sex Education module.

In the media, the notion of being HIV and undetectable is rarely discussed, while most health campaigns that do gain publicity focus heavily on testing, prevention and, more recently, chemsex.

“Until you encounter another positive person who explains it to you, it's not in your circle, it's not in your world,” says Marc Thompson, peer mentor project co-ordinator at Positively UK.

“It's nobody’s fault… because actually the education system is pretty shit.” Part of Thompson’s work with Positively UK involves him mentoring young people who’ve recently been diagnosed. Many have admitted to him that before they received their diagnoses they themselves were not only ignorant about the implications of being HIV positive and undetectable, but would also have avoided sex with positive people.

Realising the foolishness of such a prevention strategy is what he calls “stepping through the positive looking glass.”

“If you’re undetectable then you're practically uninfectious,” he says. “There are loads of studies that put this out there and those studies have been done on gay men in sero-different couples - where one's positive and one's negative - there have been no cases of transmission at all.

"When those studies are produced, we as a community should be celebrating them. They should be front-page news. This has the potential to break down a barrier that's been built up between positive men and negative men for 30 years.”

Jim Zalles, 54, moved to the UK nine years ago. Having grown up in the United States, a country he feels is generally more prejudicial towards HIV positive people than the UK, he was surprised by his fiancé’s reaction when he disclosed his status to him.

Marc Thompson: "If you’re undetectable then you're practically uninfectious".

“After interacting a bit on Twitter we decided to meet up,” says Zalles. “I informed him I was positive before we met in person, and as he had previously had sex with positive guys and was aware of how to take care of himself, it made no difference to him wanting to meet me. So he was pretty comfortable with it  from the outset.”

Although he’s encountered similarly nonplussed attitudes before, not to mention gay men who actually understand what being HIV positive and undetectable actually means, such attitudes are more common on the London scene.

“Those of us who live in London probably have access to more information and probably interact with more out, open HIV positive people,” he says.

“You get used to having that conversation, it's not quite as eye opening as it would be from someone outside of London.”

HIV stigma is rife, while opportunities to educate people – particularly the younger generation – about it are limited, neither the prejudice nor ignorance look likely to dissipate any time soon.

For many, the barriers that exist between positive and negative gay guys will continue to exist. For many, but not for all.

“Having HIV doesn't mean you won't find a loving, supporting life partner,” says Zalles. “The fact that I've found someone to spend the rest of my life with at this stage of my life is an amazing thing.”