How U=U is Spearheading the Fight Against HIV Stigma
“U=U changes everything.”
It’s a simple phrase that Bruce Richman repeats several times in our half-hour Skype chat between Waiheke Island and his basement office in Brooklyn, New York, but it’s also the most powerful phrase in his world.
In reality, it’s probably the most powerful phrase related to HIV today.
Bruce founded the Undetectable = Untransmittable movement to share the powerful message and challenge the stigma people living with HIV experience. He’s now highlighting the truth around undetectable viral load, dismantling this stigma and the goal of ending HIV transmissions.
For Bruce, this isn’t simply a global campaign – this is a very personal cause.
When, back in 2012 his doctor told him that his undetectable viral load meant he couldn’t transmit HIV – the basic message behind the undetectable equals untransmittable tagline – Bruce realised that he was released from the fear he’d been living with since his 2003 diagnosis.
Then, after that initial elation, came the anger. Why was no-one talking about this? Why were so many millions of people around the globe living without love, being terrified to have relationships and not having children? Why weren’t the big global institutions spreading the word that treatment and viral load testing could not only prevent the spread of HIV but also free countless individuals from the stigma they faced every day?
For Bruce, this wasn’t just a personal matter anymore. It became a human rights issue - and this drove the second part of his U=U journey.
“When I learnt U=U, it changed my life because so many of us who live with HIV could never imagine a time when we could love, when we could have sex or have babies without fear – and that fear has been present in the most intimate moments of our lives,” he says.
“I was elated but I was also outraged because people weren’t being told. I had been alone for nine years because I didn’t want to pass on HIV to someone I loved. When I was diagnosed I knew I would live but I didn’t want to live because I felt like I couldn’t love anyone without the fear of passing this disease on.
“And there are activists all over the world who tell us the same stories – they were alone, and they were isolated and now, with the knowledge of U=U, they have hope for love and intimacy in their lives and the freedom to know that anything is possible.”
He proudly name-drops his good work on causes such as Ellen DeGeneres’ projects in African villages and Donna Karan’s Urban Zen project into our conversation, and his LinkedIn page references stars as varied as Norah Jones, the Bob Marley Foundation, Nicole Richie and Archbishop Desmond Tutu. The fact that Bruce – who’d originally studied at Harvard Law School – had also created and run campaigns for these serious A-list celebrities meant he had the drive and expertise to take it further.
In June 2015 he set up the Prevention Access Campaign as a way to connect activists and researchers to get the U=U message out and it gained real traction.
First, there was a consensus statement, that’s now been endorsed by around 750 organisations in 95 countries. Then, in September 2017, one of the world’s preeminent immunobiologists, Dr Anthony Fauci, stood on a stage flanked by two giant screens displaying the U=U message and announced “the science really does verify and validate U=U”.
With the scientific world behind him, he set out on a “battle with the establishment and people of influence” to spread the word and change people’s perceptions of HIV.
“We teach a lot about messaging because it’s so important to get it across accurately,” he says. “We can’t leave the window open by using terms like an undetectable viral load ‘reduces risk’ or there’s ‘extremely low risk’ or allow people to say that people should still use a condom or PrEP just in case, because all these phrases still mean you’re dangerous. Instead we can use phrases like ‘zero risk’ and ‘won’t transmit’ – we really can use them now because the greatest minds in the field are saying it.”
Bruce lists cases around the world where people living with HIV are marginalised (from kids being banned from school in Nigeria to people in the US being denied dental work) as a way to show the levels at which stigma works in places where this simple message hasn’t got through.
But, he can also list countries such as Canada, Australia, Vietnam and New Zealand (he loves New Zealand, having visited eight times in his 20s and 30s, and really loves our UVL videos) where the U=U message has taken hold.
That’s the key driver: first, educate people living with HIV that treatment and testing will lead to an UVL, which means you really can live without that fear. Then, have them spread the word to policy-makers and those in power.
“First, we focus on internal stigma because there are millions of people worldwide who are suffering because they don’t know U=U,” he says. “But then there is the external stigma as well. U=U changes the way we see ourselves, but it also changes the way other people see us: the way we’re treated in clinics and healthcare settings, the way policy decisions are made about us in employment, housing and education. Stigma is such a challenge but because U=U absolutely changes the definition of what it is to live with HIV, it dismantles that stigma.
“We now have an unprecedented opportunity to do that. And that changes everything.”