HIV Aids

The U=U Message Still Needs to Filter Down to General Public

Back in 2008, the somewhat revolutionary idea of HIV treatment as prevention (TasP) — that those with HIV who are virally suppressed cannot pass the virus on to others — was met with doubt, scepticism, and scorn. It seemed inconceivable that risk-free sex without a condom was even possible between HIV-positive and negative individuals. A small group of experts in Switzerland released what would become known as the Swiss Statement, and it marked the beginning of a journey to seek out conclusive evidence to support this notion.

Due to the efforts of various groups of researchers working in different parts of the world, this evidence has subsequently been found: Major international studies with both straight and gay couples have clearly demonstrated that, even in the absence of condom use, those with HIV who are virally suppressed (or undetectable) cannot pass the virus to their HIV-negative sexual partners. This concept of TasP has become popularized by a slogan created by the Prevention Access Campaign, undetectable equals untransmittable, or simply U=U.

The U=U message has subsequently been endorsed by the Centers for Disease Control and Prevention and the World Health Organization. From a scientific point of view, the consensus is clear. At HIV conferences, U=U has received considerable attention, and HIV activists are championing this message as a way of tackling stigma. Recently, celebrities such as rugby star Gareth Thomas in the United Kingdom and television personality Jonathan Van Ness in the U.S. have come out about their HIV status and have also echoed the U=U message.

However, an important question is whether the U=U message has filtered down to the general public. U=U is an incredibly powerful message for those living with HIV who are undetectable. It assures them that there is no way to pass on the virus, even in the absence of condom use, and thus reduces a significant amount of shame and psychological burden. But for the message to be fully effective, it also needs to filter down to those who fear contracting HIV and those working in influential positions, such as local health settings.

Widespread awareness and acceptability of the U=U message remain limited. A study published in AIDS and Behavior earlier this year showed that of 732 men who have sex with men (MSM) surveyed in New York City in 2016 and 2017, 70% believed that pre-exposure prophylaxis (PrEP) offered “a lot of” or “complete” protection from HIV, whereas only 39% believed that being undetectable would offer this level of protection when condoms were not used. HIV-negative men, especially those not using PrEP, were more likely to doubt the U=U message. A much larger study conducted in 2017 and published in the Journal of the International AIDS Society had similar findings: Of 12,222 MSM in the U.S., only a third of the HIV-negative men and men who did not know their status perceived the U=U message to be either completely or somewhat accurate. A more recent study published in Sexually Transmitted Diseases showed higher awareness of U=U among young MSM aged 18 to 25 living across the U.S. Mid-Atlantic region, as 70% were aware of the campaign. Once again, those on PrEP — and therefore those who had some engagement with HIV prevention messaging — were most likely to be aware of the U=U campaign. There is very little research on the perceived accuracy of U=U outside of the U.S.

Rageshri Dhairyawan, B.Sc., MBBS, MRCP, an HIV specialist living in the UK, a country that has seen a significant decline in HIV infection rates over the past few years, told TheBody that the life-changing message is certainly taking hold among those living with HIV there. A consultant HIV physician at Barts Health NHS Trust in London, Dhairyawan said the biggest shift she’s seen in her patients has been in internalized stigma.

“The real change I have noticed so far has been related to internal stigma and shame. The message has a had huge impact on how many people living with HIV see themselves,” she said. The shift is especially pronounced in people living with HIV in serodiscordant couples. “With serodiscordant couples, the anxiety has gone, and I think we see more people bringing their partners to clinic to talk about U=U.”

However, she’s not sure the message has filtered through to the general public. “I often give HIV teaching sessions to medical students, and health care professionals from general practice and other specialities. The majority are not aware of U=U but are accepting of it once shown the data.”

In South Africa, the country which has the highest number of people living with HIV globally and the world’s largest treatment program — as well as being the country where this writer lives — the concept of U=U could be very powerful. We still have a high number of people not currently on lifesaving ARV treatment. U=U could motivate those who are not on treatment to start treatment, while also reducing stigma. Sindisiwe van Zyl, B.Sc., MBChB, a South African general practitioner with an interest in HIV, said that the message has taken a long time to get out to the masses.

“I am doing my best to share it on the platforms available to me, but more can be done,” she said. “At the moment, it is mostly those that are living with HIV that are aware of this message. It impacts them in a massive way. I hope that the message keeps spreading beyond the community of people living with HIV, because it is a message of hope!”

van Zyl is spreading the word about U=U by asking if people have heard of the latest developments in the world of HIV. She then goes on to explain how antiretroviral treatment has changed the lives of people living with HIV and talks about safer conception and benefits for serodiscordant couples. In South Africa, the epidemic is fastest growing in girls and women aged 15 to 24; thus, discussions around safer conception are crucially important. Girls and women are easily excluded from U=U, as HIV has been more associated with MSM, and thus groups such as MSM may be more exposed to the U=U message.

According to Wade Schaerer, an HIV activist in South Africa, there is a general lack of awareness of basic concepts regarding HIV transmission, and thus it is challenging to spread messages such as U=U. Schaerer added, “Although the science is well known, the U=U message is new — and it will take dedication from activists like myself to continue speaking up and educating the public. There is a general lack of understanding, and the stigma associated with HIV/AIDS is truly a public health concern.”

He also speaks about health care providers who have been reticent to adopt the message. “For many, the fact that an undetectable viral load also acts as a barrier to HIV transmission has been a difficult message to accept,” Schaerer said. “Effective responses from professionals and activists require a dynamic relationship — each has a specific but interconnected role to play.” His role as an activist remains an important one, to continually speak this message until more people get it: “For anyone who has spent more than 15 minutes with me, they will have probably received an earful about U=U. I made a commitment to myself that I would become more intentional with my work in HIV activism.”

As powerful as the U=U message is, and while it holds promise regarding a decrease in stigma, awareness and acceptability of the message tends to still be limited to those who already have HIV and are clued up regarding what it means to be undetectable. In order for U=U to have a greater impact, this message needs to start filtering down to those who are not living with HIV.

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