This World AIDS Day, Let’s Start Telling People Living with HIV the Truth

By Nina Hasen, Vice President of HIV/TB, Population Services International  

In 2011, those of us who read scientific articles about HIV learned an astonishing thing: people living with HIV, who achieved success with their HIV treatment, were not transmitting the virus to their sexual partners. HPTN 052, the first of several landmark studies on the role of HIV treatment as prevention, showed that when people living with HIV become “virally suppressed” – that is, when the treatment medication is successfully eliminating most of the virus in their blood – they can no longer infect anyone else because they simply don’t have enough HIV in their body to pass it on.  

Miraculous.  

This revelation had a profound effect on the entire HIV response. It led to massive increases in funding for HIV treatment in low- and middle-income countries because now we knew that every dollar spent to treat someone’s HIV infection not only saved that person’s life; it also helped prevent further infections. It helped shift policy from starting people on ART only once they had become ill, to starting people as soon as they are diagnosed. It changed almost everything about how HIV testing and how treatment programs work, as we raced to find everyone we could living with the virus and get them on ART as soon as possible. 

But one thing stayed the same: we never started telling people with HIV that being on treatment would stop them from passing on the virus.  

I can imagine your confusion reading that sentence, so let me repeat it.

In 2021, 10 years since we learned that treatment prevents transmission, in most parts of the world, people living with HIV still don’t know that critical fact. Many people who have been on treatment for years still live in fear of passing on the virus to loved ones. Some may have decided they would never be able to have loving relationships or children because of their HIV infection. Others keep their status a secret from family and loved ones because they fear being seen as a “vector of disease.”  

What has kept this vital information under wraps? The answer is multi-faceted.  

It took some time for the tests that show a patient has achieved viral suppression to become widely available. The World Health Organization, while clearly acknowledging that those who are virally suppressed don’t transmit the virus, has yet to create clear standards for determining when patients meet that criterion.  

Perhaps most importantly, many governments and healthcare providers are reluctant to tell their patients that treatment prevents transmission. Even though we know that the single biggest risk factor is living in an area where many people have HIV, many of us still believe that people who get infected have done something wrong and cannot be trusted. If we tell people living with HIV that they are now virally suppressed and cannot transmit, we need to trust that they will continue to take their medication every day, or else risk that they might infect someone else. It’s hard to let go of this way of thinking, when it feels like so much is at stake.  

Earlier this year, PSI and our partner, Ipsos, conducted research with HIV patients and providers in Malawi and Zimbabwe. We confirmed that most patients were unaware that being on ART would prevent them from transmitting the virus. When we told them, some cried and one said, “if only that were true, it would change everything in my life. I could actually have a baby.”  

After we explained that treatment actually does prevent transmission, we asked people living with HIV what the most important benefit of HIV treatment was to them. Not infecting anyone else, they shared.  

This must make us all pause.  

Every day, we ask hundreds of thousands of healthy young people who have been diagnosed with HIV to begin HIV treatment and stay on it for the rest of their lives. We ask them to do this despite the difficulty and inconvenience of clinic appointments and drug pick-ups, despite the fact that being on treatment makes it more likely that others will learn they are HIV positive and reject them, despite the fact that all their lives, they have been told that drugs are for sick people and yet they feel well. We cannot expect people living with HIV to start and stay on treatment if we do not offer them the most motivating benefit of all: that their daily pills will protect their sexual partners and babies from HIV. 

Since 2016, the Prevention Access Campaign has been advocating for patients to learn the truth about HIV treatment, with the slogan U=U, or undetectable viral load = untransmittable HIV. They have made tremendous progress, with key U.S. Government agencies like the Centers for Disease Control and Prevention, and the National Institutes of Health making public statements in support of U=U. PSI has also been supporting this work, through our project with men in South Africa that uses simple bottles filled with beads to teach the science of viral suppression, and now through the Flip the Script Project, which is building a campaign that can be deployed across Africa to communicate the benefits of HIV treatment to all people living with HIV and their communities.  

But much work remains to be done, and we need everyone who cares about HIV and AIDS to step up and speak out.  

People living with HIV AND their communities need and deserve to know about this amazing benefit of treatment. If you’re interested in learning more, please join us on December 6 for a satellite session at ICASA 2021: “Realizing the Benefits of U=U in National HIV Programs.” We’ll hear from experts on how talking about this key benefit can transform HIV treatment and bring important gains to the HIV response.  

This World AIDS Day, let’s commit to letting this truth set us free.  

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