At the 13th annual HIV Treatment and Prevention Adherence conference, health care and service providers gathered to learn about new treatments for people living with HIV and the best clinical practices to support adherence to them. At their best, HIV providers serve as a trusted conduit for their patients from the research world to the very practical ways that the virus impacts their lives and those that they love.
For decades, HIV providers were trained to utilize fear-based messaging about transmitting HIV if 100% condom utilization was not followed. Now, these same clinicians can inform patients that HIV transmissions can be averted by being adherent to their medication or, in other words, undetectable equals untransmittable (U=U). This message is different: less stigmatizing and more empowering. The leading federal HIV expert in the U.S., Anthony Fauci, M.D., has stated: "The science really does verify and validate U=U. From a practical standpoint, the risk is zero. So, don't worry about it."
Leading researchers and clinicians who influence best practices for conversations about the direct and indirect impact of HIV infection and treatment agree that communications regarding transmission must shift.
"It is time that providers fully integrate U=U messaging into their clinical practices, Jose Zuniga, president of International Association of Providers of AIDS Care (IAPAC) told conference attendees. "[T]he rationale of doctors resistant to messaging is not based on science or evidence-based practices," he said. He referenced countless stories from people living with HIV that they did not learn about U=U from their providers, and that some clinicians were not ready to accept the numerous peer-reviewed clinical trials confirming the science. Many HIV-positive people have been told about the benefits of treatment as prevention only years after their providers became aware of them.
"You are the gatekeepers of the science that let us [people living with HIV] know that we are not infectious, Bruce Richman, CEO of Prevention Access Campaign, said during his presentation. "People living with HIV must know that [U=U] is possible for them."
Richman warned that systemic challenges remain to educating the world about U=U. "Paternalism is the biggest cause for why white privileged men like me learned about U=U early on," he said. "But people of color and people who inject drugs weren't being told about it because some providers didn't think they could handle the information appropriately." In Richman's own experience, U=U has made a huge difference in how he lives his life and how he views himself. Richman shared: "I was terrified to infect someone that I might love because I'm living with HIV so I isolated myself. U=U freed me from that fear." He wants the campaign to do just that for every HIV-positive person.
Following Richman, a leading international advocate for addressing the needs of women and girls impacted by HIV, Lucy Wanjiku Njenga of Positive Women Voices in Kenya, spoke about the positive impact of U=U.
"U=U is incredible. U=U is a message of hope," Njenga told the audience. As a young adult, she learned soon after giving birth that she and her newborn baby were both living with HIV. Unfortunately, her baby died. After suffering such a devastating loss, she thought that she would never be able to have a family, until she learned about U=U.
"I did not learn about U=U from my doctors for almost ten years [after the Swiss Statement affirming that virally suppressed people cannot sexually transmit HIV], she said. "Researchers and clinicians knew, but they did not trust me to take care of myself and others."
Empowered with knowledge about U=U, her entire world shifted. She met and married a man not living with HIV, and they have given birth to a baby girl who is also HIV negative. Njenga stated that she and her husband both get excited each time she receives her lab results back confirming that her viral load is still undetectable. She exclaimed: "Thanks to U=U, I now have hope. I can have a fear-free relationship. I'm the safest relationship that a guy can have. Now, I have a little girl, and I cannot wait to watch her grow up and see who she will become." Teaching people about the benefits of treatment and adherence can and does change the lives of patients.
When both presenters were asked about next steps for making U=U common knowledge beyond HIV clinicians and people living with HIV and reaching people who are not living with HIV, Bruce Richman responded: "This is why we need all of you. To help get this message of empowerment and this message of hope out to the world."
Ace Robinson is a leading HIV advocate and population health expert residing in Los Angeles. He is a board director of the Avielle Foundation, which combats violence through brain health research, and co-chairs the LA County HIV Commission's Standards & Best Practices Committee. He holds a Master of Public Health from the University of Cape Town, South Africa, and he is currently completing his Master of Health Administration from Brown University with a thesis on improved HIV biomedical prevention and treatment access for black/Latinx gay/bi/same gender loving men and transgender women.