‘People on effective HIV treatment shouldn’t have to disclose their status until they’re ready’ (Opinion)

Today (December 1) is World AIDS Day, a day dedicated to raise awareness and mourn those who have died of the virus. 

Though medical sciences has provided huge advances in the treatment of HIV, many people still face prejudice and Terrence Higgins Trust medical director Dr Michael Brady reveals why the stigma surrounding the virus should be a thing of the past. 

When I meet patients who have recently been diagnosed with HIV, their most common concerns are about transmission, having sex and disclosing their status to others.

The three letters are so loaded with fear around infectiousness that many mistakenly believe they have to give up on the idea of love, a healthy sex life and a family for ever.

It’s great to be able to dispel these concerns with a simple medical fact: effective HIV treatment stops you from being able to pass the virus on to others. Once treatment has reduced the amount of virus in the blood to such low levels that it can no longer be detected, you become uninfectious.

The scientific evidence has been building for years but we shifted our advice to the more definitive “can’t pass it on” a year ago, when the groundbreaking PARTNER study published its findings. Out of 58,000 instances of condom-less sex reported in the study, where one partner was HIV positive and on effective treatment, and the other was HIV negative, there were zero HIV transmissions.

This was demonstrated again just last month, when an Australian study of more than 350 gay male couples showed zero HIV transmissions when the positive partner was taking HIV treatment, with researchers confirming an undetectable viral load was “completely effective” at preventing HIV.

I’ve seen first-hand the relief and the weight being lifted, once people living with HIV hear this message for the first time. It changes everything.

A huge amount of the stigma and discrimination around HIV is rooted in ignorance and a fear of being infected. I am still shocked to hear people sharing examples of abusive messages they’ve received on dating apps, for example, after being open about their HIV status. This kind of thing is unacceptable and unfounded.

Thanks to science, people don’t have to put up with that any more. In the UK, more than 90 per cent of people diagnosed with HIV are on effective treatment and are “undetectable” and are, therefore, not infectious. However, one in seven people living with HIV still don’t know they have it. The greatest risk of HIV transmission is from people who haven’t had a test and may have undiagnosed HIV, not those who have taken the proactive steps to get tested, get on to treatment and are now uninfectious.

This requires a shift in how we think and talk about HIV. The old approach, of treating someone living with HIV as an infection risk and of people being told to disclose their HIV status to every potential partner, is no longer justifiable. People living with HIV still have concerns about being prosecuted for passing it on, a practice called ‘reckless transmission’.

In the era of effective HIV therapy, where an undetectable viral load means no risk of transmission, these fears should be a thing of the past. People on effective treatment can have the confidence that they don’t need to disclose their HIV status until they feel ready and comfortable to do so because they are responsibly preventing transmission to their partners.

However, increasingly I find people saying that being uninfectious, in fact, makes it easier for them to have open discussions with new partners about their HIV status, and to talk more confidently about sexual health more generally. It can be liberating.

We still have much to do to spread the word. That’s why Terrence Higgins Trust launched the Can’t Pass It On campaign this summer. We wanted to say, in no uncertain terms, that people on effective HIV treatment cannot pass on the virus. But we won’t unravel decades of fear overnight. Only one in four gay people who we surveyed earlier this year were aware of this medical fact, and even fewer among the general public — only nine per cent. Even among health-care professionals the message has not completely got through. There is continued use of unnecessary caveats such as “extremely unlikely” or “very low risk.” This may come from a well-intentioned place, but it is unhelpful and outdated.

Far from being irresponsible, it’s a very simple HIV prevention message: get tested, know your status and, if you’re positive, start treatment as soon as possible. It will keep you well and protect your partners. Only when this becomes common knowledge can we start to bring an end to both HIV transmission and the stigma that surrounds it.

Find out more about THT’s Can’t Pass It On campaign at tht.org.uk/cantpassiton.