When we heard about this new campaign that’s radically changing HIV positive lives for the better, we knew we had to help spread the word. But its subversive message makes some people very uncomfortable, according to creator Bruce Richman. Words by Andrew Leavitt of ACT UP Dublin. Photo by Alina Oswald.

ACT UP – AIDS – Activism

People living with HIV who have access to treatment can expect to live normal, healthy lives. What is less well known is the fact that effective treatment also means they can’t pass on the virus to their sexual partners.

For Bruce Richman, founder and Executive Director of the relatively new Prevention Access Campaign (PAC), getting this message out to HIV positive people is vital.

“This information gives people hope, it gives them, the possibility of having lives that are not only healthier for them but are safe for their sexual partners. It changes what it means to live with HIV.”

This life change is something Richman experienced personally when he learned from his own doctor in 2012 that he couldn’t transmit HIV, two years after starting treatment and almost ten years after he’d been diagnosed.

“I couldn’t believe it!” he exclaims. “None of the sources I was going to for information were saying that I couldn’t transmit HIV; everything was still saying I was a risk. That’s when I realised there’s a problem in public health communications.”

In 2015 Richman got tired of waiting for someone else to do something about it. Working with a small group of volunteers – people living with HIV, researchers, and other activists – he founded PAC, an initiative dedicated to ensuring that people living with, affected by, or vulnerable to HIV have access to complete and accurate information.

“People need to know that treatment will save your life and will prevent you from transmitting to other people,” he says. “If we leave out either one of those, we’re doing a disservice to people with HIV.”

Despite having no experience as an HIV activist, Richman was able to bring in some of the biggest names in HIV research.

“The researchers were all very supportive,” he says. “They wanted to ensure that the ground-breaking science they were working on got out to the public properly. They didn’t know that there was a disconnect, that the science they were working on wasn’t reaching the public.”

The group’s main focus has been the ‘Undetectable = Untransmittable’ campaign, known on social media by the hashtag ‘UequalsU’. Since its launch just a year ago, more than 270 organisations in 31 countries have joined the campaign.

“The U=U campaign is a way of uniting the efforts around the world, sharing strategies and resources and showing solidarity,” Richman explains. “People are using U=U in a way that works for their communities. Some people aren’t using that phrase at all but are still connected through our work and supporting each other in this movement.”

Having that support is crucial, he tells me, “because it’s new, it’s scary and uncomfortable for some people to say this. We’re still a minority pushing this message out, so the solidarity and unity are really important.”

Although the campaign has garnered endorsements from some of the most respected organisations in the field in a remarkably short time, it didn’t always feel easy or inevitable to Richman.

“When New York City signed on to the campaign; it was a huge step for a public health official to come on board and say ‘this is true’. Then NASTAD—the association of all of the US State public health officials and some city public health officials – came on board, and that was tremendous as well. But then it became frustrating.”

Many HIV service organisations and public health officials were reluctant to endorse the campaign. “There is an unfounded concern that people living with HIV would be irresponsible with the information,” Bruce explains. “But instead of educating us and saying, ‘look, to stay undetectable you need to stay on your treatment and get your viral load monitored regularly and you’ll be fine’ – no fear, no shame – they withhold that information and keep us a risk.”

It wasn’t just large organisations that were uncomfortable with the message. “The most surprising and aggressive resistance was from within our own HIV-positive community. Some of that comes from trauma and the fear that many of us carry about transmission. ‘U=U’ is radically at odds with the status quo, which for decades has been to fear our own bodies. That can be hard to unlearn.”

“I’m sure I was a bit impatient,” Bruce laughs. “I was thinking, ‘this is incredible news; you know it’s true, why aren’t you singing it from the rooftops?’ I still feel that way! Even after the final results of PARTNER and HPTN 052 [two major studies which provided hard evidence for U=U], and NYC and NASTAD had signed on – they were still pushing back.”

The concept that the fear around HIV is a positive thing is the most destructive misperception of the epidemic

Towards the end of last year several major organisations in the US joined the campaign, quickly followed by others around the world. According to Richman, “that took us on a sort of global trajectory. Then with the global organisations like International AIDS Society, NAM/aidsmap, and CATIE, people were feeling more confident in saying it.”

“The idea of U=U is subversive and therefore has largely spread underground and by word of mouth. The more the institutions start saying it publicly, the more the principle can be openly discussed,” said Charles King, CEO and co-founder of Housing Works, the first US AIDS organisation to join the campaign, and a founding member of ACT UP New York. “The U=U campaign, led almost entirely by people living with HIV, has forced the subject out into the open.”

Richman is leading the community coalition, working hand-in-hand with US federal health departments, including the CDC, to update their messaging. This shift, which he feels is progressing well, will have an impact not only in the US but also internationally.

New efforts to promote the message are appearing with increasing frequency. The UK’s largest HIV charity and a global leader in getting the message out, the Terrence Higgins Trust, was one of the first organisations to endorse the ‘U=U’ consensus statement last summer, and just a few weeks ago launched its third national campaign, ‘Can’t Pass It On’. Combining promotions on social media and strategically placed articles in national and local media outlets, THT hopes to increase awareness about the ‘U=U’ message through the personal stories of how that information has impacted the lives of people living with HIV.

I asked Bruce about something that often comes up when there’s good news like this about HIV: the worry that HIV isn’t scary enough any more. He doesn’t have any patience for that notion.

“The concept that the fear around HIV is a positive thing is the most destructive misperception of the epidemic. The concept that keeping people with HIV dangerous will somehow prevent new infections is just flawed – in fact, it’s the opposite.”

“If you focus on people living with HIV having a manageable chronic illness, like someone who has diabetes, it starts to take away the fear of HIV. That means people are more likely to get tested. If they test HIV-positive, people are more likely to seek treatment; they are more likely to stay in care. The fear just drives people into the closet; it drives them underground. That fear is not productive.”

Where does he see the campaign going?

“I think this is the best opportunity we’ve ever had to address the HIV stigma that’s based on fear of contagion. There are intersecting stigmas – sex negativity, judgment about irresponsibility, homophobia, transphobia – but I think it’s the best opportunity we’ve ever had to address the core HIV stigma related to contagion.

“We have to do it. It takes the community to do these things. Without the community taking action, we wouldn’t be saying U=U right now. We’re still fighting. Every day is another battle, but we’ll get there.”

Find out more about U=U by visiting preventionaccess.org