Bruce Richman, the renowned activist and founder of the Prevention Access Campaign, the organization that launched the undetectable equals untransmittable (U=U) message, is on a return flight from Greece where he joined local advocates in sharing the news that when you’re living with HIV, on meds, and undetectable, it is impossible to transmit the virus to others.
For the last several years, Richman has united activists in efforts to end both the HIV epidemic and the stigma that many people living with HIV face. A growing network of health experts, professionals, teachers, siblings, spouses, parents, and friends have changed perspectives on what a positive diagnosis means. Through hard-hitting research and tenacious activism and lobbying, U=U has become a global consensus, recognized by the Centers for Disease Control and Prevention and numerous other agencies, doctors, and organizations around the world.
But despite the immense impact U=U has already had on the esteem, relationships, and overall wellness of those living with HIV (and the people who love them), the rest of the country’s general perception of HIV is still outdated. This is what drives Richman’s pursuit to change hearts and minds.
“U=U is my calling,” Richman, a lawyer-turned-activist, says. “It grabbed me by the gut and yanked me forward. I’ve never felt such a compulsion and clarity. I knew that undetectable equals untransmittable, but millions of people were suffering because they were not being told and people in positions of great influence to alleviate that suffering were sitting on their hands. I had no choice.”
Richman was recently ranked an impressive no.15 in New York Pride’s Power 100, a prestigious list of the state’s “100 most powerful members of the LGBTQ community.” It’s always been in his nature to question injustice and stand up for others. When he was just 6 years old, Richman organized a bird club to protest the bulldozing of land for a new development that would destroy an essential bird habitat.
“We didn’t win,” he admits. But it was just the start of his activism.
By the time he reached his early 20s, Richman was reading a lot of Buddhist texts, specifically the mantra: “Be happy and help others be happy,” an idea that goes straight to the core of U=U by encouraging us all to tap into our intrinsic value as humans, as activists, as people, rather than be defined by borders and terminologies.
“I must have been a guard dog in a past life, because I tend to protect people and be loyal to a fault at times,” he explains. “I feel that loyalty to people with HIV whose lives have been clearly devalued in the field and in society. I am very committed to ensuring all of us are valued.”
Pictured: Richman at the International AIDS Society conference in Paris, 2017
A Harvard Law School graduate, Richman worked in global philanthropy for two decades, developing foundations and programs around a variety of issues (including HIV). Long before U=U came to his attention, he founded Inspired Philanthropy Group, where he worked on initiatives for social change with everyone from Ellen DeGeneres to Archbishop Desmond Tutu, as well as brands like Sephora and Banana Republic.
Still, his personal climb towards clarity wasn’t always easy. After being diagnosed with HIV in 2003, Richman spiraled into a cyclone of fear and shame, afraid of transmitting HIV to those he loved. Like many others, he became isolated and says, “[I] didn’t allow myself to love.”
“I was depressed, suicidal at times, because I’d really internalized the stigma and felt toxic, dangerous,” he explained. However, in 2012, Richman discovered the scientific fact that when you are on treatment and your viral load is undetectable, it is impossible for you to transmit the virus to others. That’s when he “started to see the possibility of love and real intimacy in my life without fear. It was like a new world.”
But the realization turned into outrage when Richman realized that not only were health professionals and the HIV community failing to discuss this fact, but that millions of people living with HIV were not well-connected enough to the medical field to even know it.
“I was being told I wasn’t infectious. They were being told they were infectious. Something wasn’t right,” Richman says. “I started collecting research and talked to clinicians, HIV-positive leaders, heads of medical associations, [and] journalists for input and found the general consensus was that U=U was true and accepted by many in the highest levels. People were so open with me about what was essentially a massive human rights abuse, and many in the field were participants or bystanders.”
He adds, “I learned that some doctors felt it was okay to talk about U=U on an individual level, but there was a great fear that if the information got out to the general public then some people with HIV would stop using condoms, which would contribute to the already rising STI rates. And some people with HIV wouldn’t understand that they’d need to take their medications as prescribed to stay undetectable. Rather than educate about STIs and how to stay undetectable, it seemed like it was generally OK to withhold life-changing information from people with HIV.”
Richman also found out that doctors who did know U=U were only telling patients who they deemed “responsible.” That means that decisions were made through the lens of racism, classism, sexism, and all the other kinds of prejudice.
“People already marginalized by the system were being further marginalized,” he says. “It is a human rights issue on a massive scale. I couldn’t see that and not do anything.”
Pictured: Richman speaks on stage during the Life Ball 2019 in Vienna, Austria
In 2015, Richman formed a founding task force for PAC to help get the U=U campaign off the ground, today it includes many notables such as Housing Works founder and CEO Charles King, National Black Justice Coalition’s Venton C. Jones Jr., chief medical officer of the San Francisco AIDS Foundation Dr. Robert Grant, and HIV activists JD Davids, Carrie Foote, Peter Staley, Damon Jacobs, Shannon Weber, Jim Pickett, Noel Gordon, and Kamaria Laffrey.
Richman also reached out to Dr. Pietro Vernazza, the author of the Swiss Statement, a proclamation published in 2008 that stated people living with HIV on effective treatment cannot sexually transmit the virus. PAC also worked with respected researchers to create a consensus statement clearing up mixed messages and to confirm U=U was true.
“We created an advocacy video of people with HIV explaining why U=U is important to all of us,” Richman remembers. “Our idea was to use that scientific statement, the video, and our voices to change the narrative about our bodies. We would engage influential people and organizations to join us in confirming what we knew to be true.”
The campaign launched in July 2016. Within a few weeks, New York City signed on as the first city, public health department, and group of public health officials in the world to officially recognize the truth in the U=U statement. It was the birth of a movement.
“During the first few years, I was a machine,” reflects Richman. “The movement was much bigger than me, and I felt that my personal life didn’t matter. I was intensely driven because I knew how people with HIV were suffering, and then I’d see how U=U was changing lives. And I was full of outrage that people in influence were doing nothing about it, especially in the U.S.”
Something shifted at the 22nd International AIDS Conference in Amsterdam in 2018. “U=U was everywhere,” he says. “It was truly global. When Dr. Alison Rodger [of the PARTNER studies] said from the stage, ‘The risk is zero’ and ‘The time for excuses is over,’ and acknowledging our campaign, I felt I could relax more. I felt tremendous gratitude.”
It’s clear that U=U is a torch for the HIV community as it steps into the future. It’s also a reminder of where we come from. As Richman puts it, “Systems need to be challenged, or else they become monsters that thrive on keeping things the way they are.”
“We can say U=U now because of activism dating back to the ’80s. We also can’t get complacent now that we know U=U. We must continue to hold accountable not only our government, but also the community organizations and people who are meant to represent us and have our backs yet are still not sharing the message.”
Richman adds, “Before U=U, so many of us never imagined being able to love, to have sex or to conceive children without fear. That fear was present in the most intimate moments of our lives. After U=U, people are having social, sexual, and reproductive lives they never thought would be possible.”
For example, “There is a well-known activist in the U.S. who hadn’t had sex in 15 years. Now she’s in a relationship with a woman,” Richman says. “Another activist had attempted suicide after diagnosis and felt his semen was toxic. Now, he’s married to an HIV-negative man. A woman living with HIV in Canada had been afraid a condom would break every time she and her husband had sex for over 20 years. The day she learned U=U, she went home and had sex without a condom for the first time. I’ve met people who point to their babies and say they’re because of U=U, or show me their engagement rings.”
A major piece of the movement is sparking a larger dialogue between community organizations and federal agencies, like the CDC, which is often criticized by HIV activists for not including people of color and transgender representatives on initiatives that impact these communities most.
However, despite numerous protests and demonstrations, which Richman admits are sometimes necessary, ultimately we need to get to a place where we change the world together.
“I think if we point fingers at the feds, we also need to be looking at the nonprofit and activist role,” he says. “Are we doing enough to address the barriers to care? There are powerful people and organizations in the U.S. who have done essentially nothing to share the U=U message. They talk about stigma being the greatest barrier to ending the epidemic and aren’t using U=U to dismantle it. They talk about having the tools to end the epidemic and mention PrEP, but forget to mention U=U, which [renowned HIV researcher] Dr. Fauci calls, ‘The foundation of being able to end the epidemic.’”
“Roughly 500,000 people with HIV are not on treatment and in care,” Richman adds. “Most are slowly declining in health and progressing towards an AIDS diagnosis because they are not getting the care they need. And there are also several hundred thousand people with HIV who are suffering from social rejection, isolation, depression, suicide, intimate partner violence, prosecution, and murder because they and others think they’re infectious. The fact that PrEP continues to be the priority of too many of our leading HIV organizations shows us who is valued and who is not. I’m not knocking PrEP. We need PrEP. It is an extraordinary HIV prevention option, [but] access to PrEP should not be a higher priority than saving the lives of people with HIV.”
Moving into 2020, the future is certainly bright for the U=U movement. But in order to fully grasp its potential, Richman says we need new minds and innovators at the table.
“We talk about disruptive innovation, but we’re going back to the same well that has kept us where we are,” he says. “We need the greatest minds to come together to work on the U.S. HIV response like it’s a high-level consulting project. We need brains from other industries like the high-tech field to attack this issue from multiple perspectives. There are many entrepreneurial and brilliant leaders emerging in the U.S. field who could make an impact on a national scale if they were in positions of influence.”
Pictured: Richman (right) with Sam Stone at the LIFE+ Solidarity Gala prior to the Life Ball 2019 in Vienna, Austria.
While he cares most about saving lives of those already living with HIV, Richman knows it’s also critical to share the broader public health impact of U=U. In other words, broadcasting that getting all HIV-positive people on treatment and to undetectable viral loads is the best way to end the epidemic.
“It’s important that advocates prioritize the U=U public health argument when asking for increased funding for treatment, care, and services; not just for the wellbeing of people with HIV but also to prevent new transmissions. That prevention argument will align with many policymaker’s interest in HIV prevention. The concept is: if you want to end the epidemic, invest in the wellbeing of people with HIV. Ensuring the people with HIV have the treatment, care, and services we need not only keeps us healthy, but it’s the most effective way to stop new transmissions.”
The campaign is also building its global communications division to better serve the nearly 1,000 official U=U partners in almost 100 countries that are seeking resources to get the message out in clinical, public health, and policy networks.
In late 2020, it plans to launch a U=U grant-making fund. After all, “it’s important to cultivate the innovators,” Richman says.
“Look at the people and organizations who got behind U=U early on when most folks were either afraid to say it or were fighting us. These are the bold innovators and early adopters who challenged business as usual. They risked their personal and professional reputations — some risked their lives — to stand with the truth. These are the kinds of people we need to be leading the U.S. and global HIV response. We need to look at the ones who fought [against] U=U and are still in positions of power. These are not the people who should be in power. They should never be allowed to make decisions about our HIV-positive bodies again.”