Why are people with HIV still not being told about U=U?

Research in South Africa suggests many people with HIV are still unaware that HIV cannot be passed on through sex if someone is virally suppressed. And healthcare workers are not discussing the issue for fear it will lead to more infections. 

What is the research about? 

How well people with HIV in South Africa understand what undetectable = untransmittable (U=U) means. And the reasons why healthcare workers might avoid talking about U=U. Researchers held focus group discussions with 42 healthcare providers in Gauteng and Free State provinces. They also held focus group discussions and interviewed 54 people with HIV in Johannesburg, half of whom had been recently diagnosed.  

Why is this research important? 

In 2016, the U=U campaign began to promote the social, mental and emotional benefits of being virally suppressed and thereby having zero risk of passing on HIV through sex. But this message is still not being widely shared in many countries. It is important for U=U to be communicated more widely, especially in healthcare settings as it is proven to motivate people to stay on HIV treatment, and it can also increase well-being and reduce stigma.  

What did they find out? 

People newly diagnosed with HIV understood the health benefits of antiretroviral treatment (ART). But they knew little about U=U. Many believed that people with HIV would always be infectious and so must always use condoms. Even people who had been living with HIV for longer and had more knowledge about ART doubted it would be safe to have condomless sex if they were virally suppressed.  

Some people with HIV were aware that being virally suppressed would help them maintain good health, and that viral suppression stopped HIV being passed on to infants. But the idea that U=U could prevent sexual transmission was not well known. Yet many people with HIV said they would prefer to use ART over condoms if it was safe, especially in long-term relationships.  

People with HIV said healthcare providers did not always talk about viral load testing. As one woman said: “They don’t [viral load] test you and even if they do test you, they’re not going to communicate or translate the results or interpret them to make sure that you understand.”  

There was uneven knowledge about U=U among healthcare providers. Nurses were more aware of it than lay counsellors.  

Healthcare providers said there was a need to strike a balance between promoting U=U and promoting condom use. They were reluctant to share information about not using condoms. This is because using condoms is the approved strategy for preventing all sexually transmitted infections.  

Healthcare providers were also uncertain if their patients would understand U=U information and apply it safely. Their biggest fear was that they would be indirectly responsible for HIV infections if people with HIV misunderstood what U=U meant or thought they were virally suppressed when they weren’t. 

Some people with HIV felt that U=U could make it easier to tell partners they had HIV. But one of the biggest concerns was that people in general are unaware of U=U. So an HIV-negative partner might not believe a partner with HIV if they told them about U=U. 

What does this mean for HIV services? 

HIV counselling should include information about U=U. And this should include the fact that having sex without a condom will not lead to HIV transmission if someone is virally suppressed.  

But this messaging must be tailored to an individual’s circumstances and how well they are adhering to ART. It should be made clear that condomless sex is only carries zero risk of HIV transmission if someone is virally suppressed.  

There is also a need to increase access to viral load testing and ensure healthcare providers clearly explain what these results mean. Healthcare providers were clear about the need for standardised viral load and U=U communication training for anyone engaged in HIV care. 

In addition, there is a need to increase understanding of U=U within the wider community. Using social and mainstream media to share the U=U message can help increase this awareness. People with HIV also need support and guidance on how best to talk to partners about U=U and their viral load.