The power is in the message

Brent Allan has been working in the response to HIV for over 30 years, starting as a 19-year-old volunteer at the local AIDS council in Edmonton, Canada, and now a global civil society representative on the IAS’s Industry Liaison Forum. It has been an extraordinary journey for him as a person living with HIV, and he shares his perspectives on the game-changing U=U message from the Prevention Access Campaign...

It would be remiss of me to not go back to 2008 when the Swiss Statement was issued. It postulated that someone with an undetectable viral load may not be able to transmit HIV to their sexual partner. Many of us thought, this seems valid, this has a degree of theoretical evidence that makes sense – even if its support is mostly anecdotal and not an ideal randomized control trial. Of course, the evidence was just not strong enough and that is why we continued to advocate for minimizing risks related to sex and other harm reduction techniques.

Fast forward to 2016, when the U=U campaign was launched, and its consensus statement began to make an impact based on the results of the HTPN-025 study. It was an important moment: what we felt, thought and heard in 2008 was actually spot on. Finally, the evidence began to mount. The Partner Studies and Opposites Attract study confirmed the early findings and those of us who build up from the evidence base, who work within research and policy, had no option but to believe.

U=U is short for Undetectable equals Untransmittable. For me, “Undetectable” is the premise on which the message, the campaign and the underlying strategy are all based. Undetectability is something you attain, that is measured, that you can base your decisions and subsequent behaviour on. And for Undetectable to have meaning in the context of U=U, it has to be based on a reliable and up-to-date viral load test. We cannot promote U=U with confidence and effectively unless we are certain that we truly are undetectable. This is why I am so passionate about scaling up rapid viral load testing and for those working in the fields of diagnostics to invest in testing technologies that are highly reliable, easy to use and made available around the world.

The biggest challenge has been talking to other people like myself, those living with HIV, who still don’t believe in the logic and evidence behind U=U, no matter what you say. They changed their lives, sacrificed and struggled in order to protect themselves and those they had sex with based on the messages and strategies we promoted early on in the epidemic. I don’t want to confront them and tell them that they’re wrong for dismissing the U=U message; I realize that it may go against everything they held to be true. But I do want to say to them: “Think about what this message may have meant to the younger you, how your life may have been different. What we promote now is about the future. Our messages must be based both on what we believe and what we know to be true.”

The message is now clear: people who keep their HIV viral load at an undetectable level by consistently taking HIV medications will not pass HIV to others through sex. And keeping your viral load undetectable means taking your medications as prescribed for this makes your HIV untransmittable. Even better, by keeping your HIV undetectable, it helps you live a long and healthy life.

When I first heard of the U=U campaign, I felt that its impact was so much more than just giving permission to people to have unprotected sex or “sex without a condom”. Don’t get me wrong: if the message provides you with that permission and makes you feel confident, then fantastic, but it is much more: it is about changing societal attitudes about those who are living with HIV and, for me, this is all about the stigma, discrimination and criminalization of HIV. The campaign projects that, finally, we are no longer a threat.

What is even more fabulous is that it’s about changing how, as a person living with HIV, you think about yourself. We now no longer need to fear our bodies and minimize our lives as something less than others. We are now more than our HIV. We are deserving sexual human beings who yearn for love and compassion and the right to be who we are, no longer afraid that it is only our HIV that defines us because, frankly, I can’t pass it on and that’s because I am looking after myself and I am looking after you.

This has changed the world.

In the context of COVID-19, many of us will have acquired and shed the virus before an effective vaccine can be made widely available. I know what it means to face a world that dismisses you as a disease pariah and I fear how people who have recovered from COVID may be seen and judged and dismissed because of assumptions that they may be have been the cause of other COVID infections. Two terms used early on the HIV pandemic – “patient zero” and “superspreader” – are familiar in the COVID-19 pandemic, and they are horrific words, without meaning and imbued with blame.

There is still work to be done on U=U. Some say that the message has been heard and is too simplistic, but I think that it is still relevant and needed. In an international study from the Positive Perspective study group of people living with HIV in 25 countries found that more than one-third hadn’t heard the U=U message. It also found that those who were informed of U=U by their healthcare provider had significant improvements in health outcomes including mental and physical health. [1]

Before the COVID lockdown in Melbourne, I met a guy his late 40’s in a bar. He confessed that he had never met anyone with HIV (or that he knew of), and this shocked me. I hope that the U=U campaign changes this and that people living with HIV are not afraid of saying that they are HIV positive. I hope that guy at the bar, (cute as a button he was) doesn’t have to feel afraid to ask.

For the international community, the most important thing is that they begin to identify, understand and become advocates for how powerful the message of U=U is around dismantling stigma and discrimination. Every person living with HIV must be told about U=U, and those in sexual contact with someone living with HIV should hear it not only from their sexual partner, but broadly, in society, through social media, through sexual health education in schools and from the pulpit, the politicians and every single healthcare provider.

Communities and countries feel the challenge of the cost of responding to HIV, and they need to understand that, by promoting the U=U message, they are reducing the costs on any health system, they are going to get more people to test more frequently and they are going to limit the number of new diagnoses.

To all of you reading this, one message alone means the most to me: do not underestimate the power that the U=U message has in changing this epidemic. Do not underestimate your influence as a healthcare provider and your understanding as someone living with HIV of how this message can and will change the nature of this epidemic.

[1] Okoli C, Van de Velde N, Richman B, Allan B et al Undetectable equals untransmittable (U = U): awareness and associations with health outcomes among people living with HIV in 25 countries, Sexually Transmitted Infections Published Online First: 30 July 2020. doi:10.1136/sextrans-2020-054551