There are those of us living with HIV, who carry deep emotional scars of rejection in disclosing our status to potential partners. For others, myself included, we either restricted our search for love to our own ‘species’; another person living with HIV, or we just accepted not to go there at all and resigned ourselves to never finding love and having sex again… That was until U=U.
The Undetectable equals Untransmittable (U=U) message, endorsed by more than twenty years of scientific evidence, proves that people living with HIV on antiretroviral treatments with an undetectable viral load cannot transmit HIV through sexual contact.
While the evidence has been building for years, the U=U concept was launched in the United States in 2016 by Bruce Richman who helped found the Prevention Access Campaign to spread the word about U=U. It was two years later that the concept gained traction in Australia.
Timothy, 28, who is in a serodiscordant open relationship with his partner of seven years, says U=U was a game-changer for the emotional wellbeing of people living with HIV and ending HIV stigma.
These anxieties include rejection, physical and emotional attack and our personal health information shared with others without our permission.
In 2020, most of the general population still have not heard of U=U, let alone developments in HIV treatments dating back to 1996. So, has U=U made any real difference? Has it helped people living with HIV to find love, or an interlude of sexual pleasure?
Timothy and his partner met via the online dating app Grindr just five months after Timothy was diagnosed when he was very much alone and had little knowledge of U=U.
‘We were both at university. It was 2014 and at the time I wasn’t connected with the HIV community. U=U wasn’t something I was told about,’ he said.
Timothy chose not to disclose to his family or friends and only his HIV doctor and nurses knew of his status.
‘I told my boyfriend two months after we met. He was one of the first people I told and he felt shocked and saddened for me because I’d had no support and had dealt with my diagnosis alone. We always used condoms as this is the norm in the gay community. People don’t always ask about your status.’
Timothy explains that in the gay community, most people know about the reality of HIV. Many of his friends know about U=U and they are often on PrEP as well.
Timothy said he and his boyfriend continued using condoms for about a year before they had the confidence and trust in U=U.
‘When we stopped using condoms, he also started on PREP, but that was because we were in an open relationship and it was for his protection from his casual partners.’
Timothy says there’s a difference between knowing about U=U and believing in it.
‘These days when I have casual sex with other people, often my HIV status isn’t important. But I know there are still people in the gay community who aren’t ready to trust the science and this is where we are at with U=U.’
Timothy’s advice to others is to have confidence in knowing that it’s your decision to disclose.
‘If you know you are protecting your partner it’s up to you whether you disclose or not, especially if it is casual. Be confident in deciding when, if or how you disclose. It’s your decision. And if someone is afraid of HIV, you can give them the information about U=U, but it’s not a failure on your part if it makes no difference to them.’
Timothy says in the gay community, the newly diagnosed guys are often afraid that the only people they can date again are other positive guys. ‘But this is not true at all. You can date anyone and U=U gives you the confidence to do so without the fear of transmission.’
But this is where it gets very confusing in this new era of U=U. Public health laws in Australia differ from State to State. However, whether or not an undetectable viral load, and the scientific evidence that supports U=U, constitutes reasonable precautions is still undergoing review.
Sarah, 33, says the public health laws around HIV are outdated and need to come under Federal jurisdiction so there is no confusion across the states. Sarah says U=U is more than a reasonable precaution and it has allowed her the freedom to enjoy fully all the pleasures of sexual relationships unhindered and unimpeded.
‘With U=U, the same rules apply to everyone,’ she says.
‘It’s also about pleasure. I use condoms, but this also depends on the partner and if they initiate it or not. This is a choice and I’m not putting anybody at risk. Of course, if I’m having sex without a condom, I would have regular sexual health checks.’
Sarah’s advice on disclosure is to think about why you’re telling that person.
Sarah adds that mostly when she has disclosed and informs the person about U=U, it’s been a positive experience.
James*, a 64-year old straight man says U=U helped him find love and he and his partner threw away the condoms about a year ago. But James experienced the highs and lows of online dating before he found ‘the one’.
James was living and working overseas in 2008 when he found himself in a brief relationship with a young woman, but a few months after it ended she phoned him and advised she had HIV and he should get checked. He was diagnosed positive.
‘I was terrified. I knew nothing about HIV other than it was a death sentence, but my doctor reassured me about the treatments and said I was not the only expat with HIV so I was not alone,’ James said.
But due to the expense of buying treatments and unreliable blood tests, James moved back to Australia in 2011.
Alone and without support, James went on the HIV online dating site, Positive Singles, where he met a woman living with HIV.
‘We were together for four years, but had very different interests and I realised the relationship was never going to work.’ Then by chance he met an old acquaintance, Sally*.
‘We hit it off and I felt I needed to tell her. She had no idea about HIV and I told her about the treatments. Her doctor advised her that provided we used condoms, there was no risk of catching HIV.’
James says the doctor also told her that if his viral load was undetectable, the risk of transmission from him was next to zero.
‘And this was even before U=U.’
But even so, James says, they still only had sex with a condom, but after six months, Sally called off the relationship due to a family crisis.
‘When we split up, I really lost it and started to doubt myself. It was around that time, U=U was announced at a peer-support event.
I was aware of U=U but never really thought about it, but it gave me the confidence to get on the online dating site, Plenty Of Fish. The first woman I met, we’d been chatting online for two weeks and on our first date, when we were walking back to her place, I said: “I’ve got something to tell you”. She completely flipped and screamed at me: “What the fuck. You’ve got AIDS. Why didn’t you tell me before?” She then ran off.’
James then met a second woman online and after several dates when he felt they were heading towards having sex, he told her. ‘She was a nurse so I thought she’d be a bit more understanding, but she told me she had enough hang-ups of her own and didn’t want to deal with HIV.’
The third woman James met, was a vibrant 70 year-old lady who didn’t run.
‘I told her about U=U and she just said it was okay as long as I used condoms.’
James said this relationship was working well but he ended it a few months later when he contacted Sally and they immediately resumed their relationship.
‘We realised we loved each other. This was early in 2018 and while James had watched a few U=U videos and had gained more knowledge from attending peer support meetings, it was Sally who suggested they throw away the condoms after doing her own research.
‘I was undetectable and she said she wanted to have sex without a condom. Since then, the majority of times is without a condom. Sally also doesn’t feel it is necessary to have an HIV test.’
James said he felt he needed to contact the women he’d met online and let them know about U=U.
James feels this woman’s reaction was because of the ignorance about HIV and U=U by the public.
‘There’s been no information about U=U so how are they going to know? The Australian government and the media created the stigma around HIV and it is about time that they undo the damage they’ve done,’ he says.
James’ advice to other people living with HIV entering the dating scene is to tell the other person sooner rather than later.
‘If I thought it was going further, I’d say to the woman, before we go anywhere, you need to know I’m living with HIV.’
While U=U is a breakthrough for people living with HIV to find love and enjoy sexual pleasures just like the rest of the population, it is also key to breaking down HIV stigma because it is stigma that is the cause of many of the issues we continue to face.