2023 Undetectable = Untransmittable global policy roundtable report: a multistakeholder perspective on Undetectable = Untransmittable research and policy priorities
N. Wells
A * , B. Richman B , D. Grace C , B. Riley D , C. Hui E F , L. Vojnov G , L. Stackpool-Moore H , J. J. Ong I J , A. Dowell-Day D and B. Allan K
A
B
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Abstract
Launched in 2016 by Prevention Access Campaign, the ‘Undetectable = Untransmittable’ (U=U) campaign empowers people living with HIV to live full social, sexual and reproductive lives, dismantle stigma, promote increased treatment access, and advocate for updated HIV guidelines.
Key priorities for promoting improvements to community-centred, evidence-informed U=U policy and research were the focus of a half-day global roundtable held in 2023 alongside the 12th International AIDS Society Conference in Brisbane, Australia. After a series of presentations, experts in U=U research, policymaking, advocacy and HIV clinical care participated in facilitated discussions, and detailed notes were taken on issues related to advancing U=U policy and research.
Expert participants shared that knowledge and trust in U=U remains uneven, and is largely concentrated among people living with HIV, particularly those connected to gay and bisexual networks. It was agreed that there is a need to ensure all members of priority populations are explicitly included in U=U policies that promote U=U. Participants also identified a need for policymakers, healthcare professionals, advocates and researchers to work closely with community-based organisations to ensure the U=U message is relevant, useful, and utilised in the HIV response. Adopting language, such as ‘zero risk’, was identified as crucial when describing undetectable viral load as an effective HIV prevention strategy.
U=U can have significant benefits for the mental and physical wellbeing of people living with HIV. There is an urgent need to address the structural barriers to HIV care and treatment access to ensure the full benefits of U=U are realised.
Keywords: health equity, HIV, HIV prevention, HIV treatment, Prevention Access Campaign, stigma, U=U, undetectable viral load.
Introduction
There is now scientific consensus that when a person living with HIV has an undetectable viral load (UVL; <200 copies/mL), there is zero risk of HIV sexual transmission.1–3 Launched in 2016 by Prevention Access Campaign, the ‘Undetectable equals Untransmittable’ (U=U) campaign sought to empower people living with HIV to live full social, sexual and reproductive lives, dismantle stigma, promote a public health argument for increased treatment access, and pressure national and international health organisations to update HIV guidelines confirming the benefits of U=U.4
Beyond HIV prevention, increasing awareness of U=U has been promoted as an effective tool for reducing HIV-related stigma in both the broader population and among people living with HIV themselves.5 People living with HIV who are informed by their healthcare providers about the benefits of U=U report greater mental and sexual health outcomes when compared with those who are not.6,7 Reaching and maintaining UVL can engender a sense of control over one’s health and wellbeing, and reduce anxieties about onward HIV transmission.8 Although the potential benefits of U=U are immense, persistent structural barriers and lack of universal access to antiretroviral medications and viral load diagnostics in lower resource settings remain areas of concern to people living with and affected by HIV.9
From its inception in 2016, U=U has been a grassroots, community-led movement, and is endorsed by over 1050 organisations in 105 countries worldwide.9 The U=U movement underpins international efforts to reach community-level UVL and virtually eliminate new HIV transmissions, and end AIDS as a public health concern, by 2030.10
Key priorities for improving community-centred, evidence-informed U=U policy and research were the focus of a half-day global roundtable held in 2023 alongside the 12th International AIDS Society Conference on HIV Science in Brisbane, Australia. This roundtable built on a series of earlier meetings, including a roundtable held alongside AIDS 2022 in Montreal, that also discussed U=U policy and research. In this paper, we report on key themes and issues that emerged from 2023 discussions.
Methods
The 55 participating delegates included experts from community-based HIV organisations, health care, research and policy, and people living with HIV. After a series of presentations, delegates participated in small group discussions about issues related to advancing U=U policy and research. Discussions were led by five facilitators and five notetakers. Facilitators and notetakers worked together through successive groups to guide discussion and take detailed notes.
The key aim of discussions was to identify and explore gaps in U=U research and implementation, contribute to the development of best-practice policies, and agree on global priorities to ensure everyone affected by HIV benefits from U=U messaging. Notes were compiled and analysed by all authors using thematic analysis techniques.11 The author group met regularly throughout to ensure the data were accurately represented.
Key themes
A need for targeted and tailored messaging
There was widespread consensus that although awareness of U=U is increasing, knowledge and trust in U=U is uneven, and predominantly concentrated among people living with HIV who are connected to gay, bisexual and queer communities.6,12–19 Among other populations at heightened vulnerability to HIV acquisition, awareness and trust of U=U is more limited.20–22 Participants identified a need for members of all priority populations, including women, Indigenous and First Nations peoples, racially minoritised groups, migrants, people who use drugs, and sex workers to be explicitly included in policies that utilise and promote U=U.
To ensure the impact of U=U messaging remains relevant, useful and utilised in the global HIV response, it was advocated that researchers, policymakers and healthcare professionals work closely with community-based organisations to ensure messaging meets the needs of underrepresented populations. Provided messaging makes it clear that there is zero risk of HIV transmission, language may not necessarily need to specifically state ‘U=U’, and could be adapted to align with cultural and linguistic norms. The Vietnamese campaign to promote U=U ‘Love=Life’ (K=K in Vietnamese) is one example of an effective collaboration between community-based HIV networks, peak international and local health agencies, and healthcare providers. This campaign utilised the science underpinning U=U to challenge and shift the Vietnamese public’s perceptions of people living with HIV, while also encouraging people vulnerable to HIV acquisition to engage with HIV testing services.9
A need for unqualified messaging
Alongside HIV pre- and post-exposure prophylaxis, and treatment as prevention, U=U is part of a broader biomedical shift in approaches to HIV prevention.23 While knowledge of the preventive benefits of antiretroviral therapies is not necessarily new, official endorsement of both pre-exposure prophylaxis and treatment as prevention as ‘legitimate’ HIV prevention strategies has challenged traditional ways of thinking about HIV prevention centred on condom use. It was argued that consequently, some clinicians may be hesitant to communicate UVL as an effective HIV prevention strategy,12,18,23–25 and that there is a need to increase trust and awareness of U=U among healthcare professionals. At the same time, it was said that healthcare workers must be encouraged to proactively inform their clients about the health and protective benefits of U=U. Adopting language, such as ‘zero risk’, was identified as crucial when describing UVL as an effective HIV prevention strategy. This reflects updated language used by the World Health Organization that explicitly states that there is zero risk of HIV transmission when a person living with HIV has an UVL.26 Participants shared that one of the challenges for healthcare providers in adopting such language, however, is there may be reluctance to refer to anything as completely risk free. Whether intended or not, the use of language, such as ‘negligible’ or ‘almost zero’, implies that although remote, UVL does not completely eradicate the risk of HIV transmission. Adopting the language of ‘zero risk’ removes any ambiguity around the effectiveness of UVL as an HIV prevention strategy.
A new sero-divide?
International guidelines recommend initiating HIV treatment either immediately, or as soon as possible, after an individual receives a positive HIV diagnosis.27 For some, initiating antiretroviral therapy quickly is desired, and considered an important factor in reducing the impact of HIV on one’s health and in eliminating the risk of HIV transmission.28 However, beginning antiretroviral treatment is not necessarily straightforward. Some individuals may opt to delay treatment initiation owing to various factors, such as concerns about treatment effectiveness and side-effects, HIV-related stigma, unintended disclosure, and economic barriers to accessing HIV treatment and care.29 Some participants raised concerns that the push to increase the number of people living with HIV on treatment may create a further sero-divide. That is, people living with HIV who either choose not to take treatment, have a detectable viral load or for whom treatment has failed become characterised as a ‘threat’ to public health, justifying heightened medical and legal surveillance.30,31
The win–win agenda
Ensuring all people living with HIV have access to appropriate health care and treatment is crucial to ensuring the health and wellbeing of people living with HIV. However, HIV remains a highly stigmatised condition,32–34 and in some contexts, appeals to increase treatment access that centre the health and wellbeing of people living with HIV may not be enough. The benefits of U=U and increased treatment uptake extend beyond the health and wellbeing of individuals living with HIV. By reducing rates of HIV transmission, increasing community-level UVL can also reduce the burden on health systems, and has important social, economic and public health benefits. In contexts of high levels of HIV-related stigma, some delegates suggested taking a more pragmatic approach, whereby the economic and public health benefits of U=U are emphasised. Prevention Access Campaign characterise this as ‘The win–win agenda’,35 where the social, economic and public health benefits of U=U, alongside the benefits to the health and wellbeing of people living with HIV, can make a compelling case for the expansion of HIV treatment access.
Conclusion
At an individual level, U=U can have significant benefits for the mental and physical wellbeing of people living with HIV, engendering a sense of optimism about living with HIV long term, and reducing anxieties about onward sexual HIV transmission. U=U has been evidenced to be a powerful tool for reducing HIV-related stigma and discrimination, including experiences of self-stigma among people living with HIV. To increase access to HIV-related health care and improve awareness of, and trust in, U=U beyond people living with and affected by HIV, there is a need for co-ordinated and collaborative action across all stakeholders, including people living with HIV, key and priority populations, international and community-based organisations, local governments and policymakers, researchers, clinicians, and advocates. There is also an urgent need to address the structural barriers to HIV care and treatment access, including policies that not only seek to improve treatment availability, but that also work to reduce poverty, eliminate discrimination and stigma, and improve food security. Without prioritising the holistic social and medical needs of those who are most vulnerable and marginalised, centring people living with HIV at the heart of the response, and supporting community-led monitoring to track and evaluate U=U policy uptake and implementation, the full benefits of U=U will ultimately remain unrealised by all stakeholders in the global HIV response.
Conflicts of interest
Jason J. Ong is the Co-Editor-in-Chief of Sexual Health. To mitigate this potential conflict of interest they were blinded from the review process.
Acknowledgements
The authors and organisers extend their gratitude all participants for sharing their knowledge and contributing to the discussions that this report drew on. We also acknowledge the role of all participants living with HIV, many of whom shared their own lived experiences, perspectives and expertise to push discussions forward.
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