Garry Brough, our Peer Learning, Partnerships and Policy Lead, is a long-standing HIV activist and an advocate for peer support. He is also the Fast-Track Cities‘s Community Representative for London and recently wrote a powerful piece as part of their Public Knowledge and Attitudes work.
I wanted to write about HIV for people who don’t have it.
I felt like this following the recent report from the National AIDS Trust and Fast-Track Cities London on ‘public knowledge and attitudes towards HIV‘ and London’s goals of reaching zero HIV infections, deaths and stigma by 2030. In it, I hope to explain some things that many people living with HIV would like you to know, to address some of the questions or assumptions some of you might have. They are in no way meant to be a judgement of you or your opinions (as judgement is exactly what we’re trying to work to remove), but more a list of tips on how to handle conversations about HIV. Many of these questions or comments contribute to the ongoing stigma experienced or anticipated by people living with HIV and need to be finally swept aside. They have been drawn from my own 30 years of living with the virus, along with over two decades of working with and listening to the difficulties and hopes of others who are living with HIV.
You won’t get HIV from those of us who know we have HIV. Nearly all those who know they have HIV in the UK today (98%) are taking HIV medication, because we want to take care of our health and protect our partners. Having no detectable virus in our blood due to effective HIV treatment means that the virus can’t be passed on (Undetectable = Untransmittable), a medical fact backed globally by every important clinical and scientific body. This isn’t just relevant to potential sexual or romantic partners, but also those healthcare providers who feel the need to slap on a couple of pairs of gloves ‘to be extra careful’! For those professionals who need to refresh their knowledge, please remember that universal precautions are just that – the same for everyone, since people who don’t yet know they have HIV (or other blood-borne infections) will be more infectious.
It’s likely that most of us got HIV from someone who didn’t know they had it yet, but being asked this feels like a way of apportioning blame, which is unhelpful and potentially uncomfortable for many people. It also sets up a potential moral judgement of whether you got it from sex, which can feel like a way of blaming us. Living through the current pandemic should have by now made us aware that there should be no blame or judgement around contracting a virus.
A lot of us didn’t think we were at risk of HIV and were diagnosed late, when we were already ill. 43% of people were diagnosed late last year, at a point where their immune systems were already damaged. They didn’t think HIV was going to affect them so didn’t test earlier, but as I mentioned above, it is a virus and does not choose. Knowledge definitely is power when it comes to HIV. If you’ve ever had sex without a condom, there is a possibility that you could have HIV, so get a test.
That’s great to hear! The last thing we want is for HIV to be passed on, since we remember vividly how awful it was to receive this diagnosis. We also want sex to be safe, but these days that can mean treatment for us, PrEP for you or condoms. Each and all of these things prevent HIV transmission, so please be aware that one size does not fit all.
We salute those of you who have taken the initiative to take PrEP and look after your own health. Many of us would have leapt at the chance had it been available. But if you are taking PrEP and are happy to have sex without a condom with someone who tells you they are HIV negative, but still avoid people with HIV as sexual partners, please refer back to the previous statements about U=U and educate yourself.
We don’t want sympathy for our status – it was often just bad luck. What we would really like is for others not to judge or discriminate against us. We’re trying to get on with life and not make a big deal of it. The main reason it becomes a big deal for most of us is when we’re judged by people who don’t have it. For example, if you say on a dating profile that you’re ‘clean’, bear in mind that it’s not only offensive to us, but is only a valid statement until you next had sex after that test, since you could easily have picked up an STI since then.
Having a moral judgement about our status is an uninformed perspective, founded on the assumption that we’ve done something you haven’t or wouldn’t, which is why it couldn’t happen to you. That isn’t the case and it can happen to you. We have all made mistakes, had condoms break and many of us have had an STI at some point – we can all be careful, but being judgmental protects no-one. Oh, and who defines what promiscuous is and how much sex is ‘too much’ or a bad thing?!
We have jobs, pensions, insurance and mortgages – we don’t need anyone to look after us. We have great clinical care and voluntary sector support to help when things are tough. But like any human being, we want friendships, intimacy and love. HIV should not be a barrier to any of these things.
Thanks for asking, but we’re not going to get sick from HIV. Treatment prevents that and having been diagnosed with HIV, we generally try to take care of ourselves and get regular health checks. In fact, according to the latest data, people on HIV medication in the UK now have a lower death rate than the general population, thanks to the fact that we have regular health checks!
If we are genuinely to reach zero HIV transmissions, deaths and stigma in London (and the UK) by 2030, we will all need to play our part, by understanding what HIV is and isn’t, getting tested as regularly as might be needed and prioritising our own sexual health and that of our partners. It’s up to all of us to be a part of the solution and talking openly is an essential part of taking care of ourselves and each other.
