Undetectable=Untransmittable=Universal Access (U=U=U): transforming a foundational, community-led HIV/AIDS health informational advocacy campaign into a global HIV/AIDS health equity strategy and policy priority

Scientific origination and community-led advocacy of U=U

U=U campaign: a public health information and advocacy campaign borne out of need

In 2012, Bruce Richman, a gay man living with HIV, reached out to his doctor in fear that he might pass the virus to his seronegative partner. He was both comforted by being informed by his doctor that sexual transmission of HIV would not occur given his undetectable viral load, yet also dismayed when his clinician refused to write down what was orally communicated to him so he could show concrete proof with his partner. The reluctance of the clinician to fulfill Bruce’s request stemmed out of a top-down clinical-patient approach, which precluded the right of PLHIV and their rights to accurate health information and self-determination as sexual beings. Meanwhile, few clinicians, service providers, public health officials, and policymakers were aware of the latest scientific breakthrough from the HPTN052 and PARTNER 1 studies. The European AIDS Treatment Group (EATG) issued a statement in October 2015, which called for ‘better public information to be made available in Europe and globally about the prevention benefits of ART, and in particular the fact that PLHIV with undetectable viral loads are not infectious. Widespread ignorance of this fact helps perpetuate stigma….and it should be the subject of a funded public awareness campaign, possibly in conjunction with a PrEP awareness campaign’.¹⁵

The U=U Campaign was a public health and advocacy campaign borne out of need. After having followed the emerging science between 2012 and 2016, Bruce Richman turned his frustration about the lack of speedy knowledge dissemination of the studies’ findings to PLHIV by incorporating the Prevention Access Campaign (PAC) and jumpstarting the U=U as a public awareness campaign in July 2016. Given the urgency to spread scientific evidence widely to the PLHIV community, Bruce initially sought out global scientific experts including Dr. Pietro Vernazza of the Swiss Statement (Switzerland), Dr. Jens Lundgren of the PARTNER Study (Netherlands), Dr. Myron Cohen of the HPTN052 Study (US), and Dr. Andrew Grulich of the Opposites Attract Study (Australia) to release the Risk of Sexual Transmission Of HIV From A Person Living With HIV Who Has An Undetectable Viral Load Consensus Statement. After its initial release, other global experts including Dr. Julio Montaner and Dr. Mona Lofty joined to support the document.

Early supporters of U=U came from the Terrence Higgins Trust in the United Kingdom, and shortly thereafter, a video interview with Dr. Carl Dieffenbach, Director of the Division of AIDS at the National Institute of Health, which the Prevention Access Campaign shared widely.¹⁶ The consensus statement was not initially widely embraced and was often met with skepticism by scientists or gatekeepers. Common initial misconceptions and critiques of the campaign included: (1) a general lack of awareness and belief in the rigour or force of the new-found evidence; (2) a concern that the unsophisticated PLHIV consumer might not be able to understand the science; and (3) fear that PLHIV who learn about the new evidence would engage in risk compensation. To a lesser extent, other reservations about the campaign included perceptions that the campaign was too European or North American centric, and that the campaign would primarily benefit gay white men living with HIV with access to resources. Some also questioned the ability/inability for PLHIV to achieve viral suppression given the lack of universal and affordable access to ARV and VL diagnostics in lower- and middle-income countries,¹⁷ and how undetectability as new clinical benchmarks would create a viral underclass for PLHIV who are unable to reach viral suppression.¹⁸ Many AIDS service organisations hesitated to support U=U as many were risk-averse to endorse the new consensus statement. One international PLHIV network even criticised the campaign as opportunistic, likely a result of gatekeeping and territorialism of the stagnant HIV funding landscape, yet had to rescind its statement after uproar from the PLHIV community.

To address the concerns raised, the campaign emphasised that appropriate and effective translation of the science to support PLHIV to understand how successful ART would prevent new HIV transmission was integral, that the campaign could drastically reduce HIV stigma, and held the potential to motivate PLHIV to be and adhere to a successful ART regimen. It noted the decision to start HIV treatment must rest with the PLHIV, and emphasised that addressing the biological, social, systemic and structural determinants and inequities that prevent PLHIV from being able to reach an undetectable VL status, including ‘factors limiting treatment access (e.g. inadequate health systems, poverty, racism, denial, stigma, discrimination, and criminalisation), pre-existing ART treatment resulting in resistance or ART toxicities’ are core elements of its objectives.

U=U uptake on the local, national, bilateral and multilateral levels

U=U began with humble roots as a grassroots community-led HIV health information and advocacy campaign with strong backing from the community, community-based organisations, and civil society actors. The diffusion and integration of U=U as public health campaigns, interventions, and policies varied across geographic and socio-political contexts. This section highlights how various countries, bilateral and multilateral mechanisms have adapted U=U into its public health strategies and helped paved way for U=U to emerge as a global HIV/AIDS health equity strategy within the multilateral HIV/AIDS policy spheres:

Australia: Victoria became the first state in Australia to endorse U=U with its ‘Eliminating Stigma in HIV Treatment’ policy document. This was followed by an announcement by the Andrews Labor Government on World AIDS Day 2017 of AUD $300 000 for Living Positive Victoria to develop the first state-wide HIV peer navigation program, and the integration of U=U in Victorian HIV Plans 2017–2020 as well as 2020–2030.^24–26 In 2020, Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM), an organisation that provides support to the HIV, viral hepatitis, and sexual health workforce, issued a U=U Guidance for Healthcare Professionals.²⁷

USA: Within the USA, U=U gained steady endorsements on the municipal, county, state, and national levels. In 2016, the New York City Health Department launched the HIV Status Neutral Prevention and Treatment Cycle with messaging aimed at people of both serostatuses and describes the HIV testing and care continuum.²⁸ On 26 June 2017, Mayor Muriel Bowser of Washington, D.C., became the first elected public official in the USA and the second health department to endorse the U=U.²⁹ The district subsequently developed and launched the ‘You are the Solution’ campaign to encourage treatment adherence for PLHIVs and help reduce newer cases of HIV transmission in the district.³⁰ Within the US on the national level, public health entities such as the Center for Disease and Control (CDC),^31,32 the National Institutes of Health,^33,34 National Institute of Allergy and Infectious Diseases,³⁵ Indian Health Services,³⁶ National Association of County and City Health Officials,³⁷ and the National Directors of STDs³⁸ have incorporated U=U in its public health guidelines and communication assets.

Canada: At the AIDS 2018 Conference, Canada became the first country to publicly endorse U=U.³⁹ Since then, an increasing number of countries have endorsed or integrated U=U in their national HIV strategies or national health plans. Ahead of the AIDS 2020 Conference, the Public Health Agency of Canada released a video calling on all nations to recognise and endorse U=U and make it a core part of their HIV response.⁴⁰ Canada was also joined by the USA where they co-released the ‘Multinational Undetectable=Untransmittable (U=U) Call-to-Action’.⁴¹

The living document encouraged countries to do the following: (1) recognise U=U as a primary HIV prevention method and/or as part of a combination prevention strategy that prioritises prompt testing and diagnosis of HIV, support for linkage to treatment, and retention in care and adherence support for PLHIV; (2) integrate U=U science into HIV guidelines and official communications as an essential component of and demand creation for HIV policies, prevention, testing, treatment, and care services and research; (3) develop sustainable and effective community-informed national strategies and countrywide U=U programs; (4) enhance equitable access to and uptake of antiretroviral treatment, and viral load testing and diagnostics so PLHIV can realise U=U, particularly those in low-resource settings; (5) address inequities and barriers facing PLHIV and accelerate access to treatment, care, and diagnostics through policies and the creation of awareness campaigns for key populations and the general public to decrease HIV-related stigma; and (6) require HIV care workers including clinicians, peers navigators, community health workers and other allied professionals to communicate U=U through concise and accurate messaging during service delivery through training and support.

Vietnam: The Vietnamese Network of PLHIV (VPN+) was the first positive people network in Asia to endorse the U=U Consensus Statement. Following results announced at the International AIDS Society 2017 Conference in Paris, France, the Vietnamese CDC made a decisive leadership decision to integrate U=U into its public health messaging by integrating U=U into its official health guidelines and strategies. Through a state and community co-development partnership, VPN+ and the CDC Vietnam launched Phase one of the ‘Không phát hiện=Không lây truyền’ or K=K (U=U in Vietnamese) on World AIDS Day 2018 with the central messaging of ‘I’m positive, he/she will never be’ and the idea of ‘Live, Love’.^42,43 The empowering campaign disseminated key information to PLHIV and healthcare providers, and press conferences and media trainings were held for journalists.

Aside from highly visible public health endorsed campaigns shared through different media platforms, the CDC Vietnam provided innovative seed grants to local community groups as well as organised public events and dedicated media segments where K=K can be disseminated to wide, diverse audiences. Phase two of the campaign was launched between 2019 and 2020, incorporated the core theme from phase one, and expanded it to ‘HIV + Life: Live, Love, Like Everyone Else’ with an anti-stigma and discrimination against PLHIV toolkit to further engage the public on the K=K messaging.⁴⁴ Evaluation of the K=K revealed the social media campaign was highly successful, resonated with wide audiences, and garnered over 6.2 million likes, with 32.5 million advertisement views, and was deemed to be 20-fold more persuasive than average Facebook ads and campaigns in the Asia Pacific region.

Other notable countries: Outside of the USA, steady progress on the integration and utilisation of U=U has been led by public health bodies such as Public Health England in the UK in 2017 and the National Health Service.⁴⁵ The Government of Nepal, through consultation and advocacy of community-based organisations, including the Blue Diamond Society, integrated U=U in its National HIV Strategic Plan 2021–2026 under its HIV prevention strategy.⁴⁶ In 2018, the New Zealand Prime Minister, Jacinda Ardern, noted U=U as an evidence-informed campaign that is endorsed by UNAIDS and the WHO, and ‘should reduce stigma against people with HIV and is an acknowledgment that we can end HIV transmissions through treatment.’⁴⁷ In Africa, President H.E. Edgar Lungu, publicly endorsed U=U to coincide with the national launching of the public health information campaign in the western province of Zambia on 8 May 2019.⁴⁸ On 21 March 2022, Eastern Cape became the first of its nine provinces in South Africa to utilise U=U in its public information campaign with the goal to encourage PLHIV to begin, stay adhere to, or resume treatment and to reach and maintain an undetectable viral load.⁴⁹ The launch saw hundreds of PLHIV promoting U=U on the benefits of effective treatment and undetectability and called for an end to HIV-related stigma.⁵⁰ Other Member States serving as executive members on the UNAIDS Programme Coordinating Board (PCB) including Thailand, Kenya, and Germany also played key roles as vocal supporters of U=U.

U=U recommendations for communities and global HIV/AIDS multi-stakeholders

Studies have shown the benefits of U=U to improve the health outcomes and quality of life of PLHIVs, including supporting acceptance of one’s seropositive status, enhancing self-image and lessening societal HIV stigma,⁵⁹ lowering anticipated and sex-related HIV stigma,⁶⁰ and enhancing one’s ability to disclose one’s seropositive status with partners.⁶¹ Although U=U has already garnered immense support from PLHIVs and community-based organisations worldwide, Huebenthal noted that ‘‘Undetectable’ cannot be the end of public discourse about AIDS – it can only be the beginning of more inclusive tomorrows.’⁶² Indeed, community dialogues and discussions on U=U often uncovered and greatly re-invigorated the need for the community and movement actors to engage in deeper and more nuanced discussions about the present state of the HIV response; how can we ensure that the rights and social determinants of PLHIVs are protected and improved, so no one living with HIV is left behind? How can all PLHIVs and their communities gain access to treatment and achieve undetectable viral load regardless of where they may live in the world? As noted by Ackerly, the discourse of human rights and legal entitlements shift to the actual enjoyment of human rights; all stakeholders and movement actors of the HIV response must also find ways to create connected activism that is centred on intersectionality, cross-issue advocacy, the building of capacity of groups, and the continuous uncovering of barriers that prevent the enjoyment of rights by the individual in an interconnected global community.⁶³ The work of the global HIV response, including the work on U=U, should strive to create such connected activism to end the global AIDS pandemic.

Opportunities lay ahead in how communities can continue to advocate and collaborate with global HIV/AIDS multi-stakeholders to further integrate and implement the strategy of U=U as an essential and complementary HIV/AIDS pillar to the current Global AIDS Strategy 2021–2026 to end inequalities to end AIDS by 2030.⁶⁴ This new strategy utilised an inequalities lens to show and highlight the systemic and structural inequities that continue to hinder the progress made within the response. To accelerate the reaching of the global 95–95–95 testing, treatment, and viral suppression targets, the WHO led an informal virtual multi-stakeholder technical briefing with UNAIDS PCB on the role of viral suppression through antiretroviral therapy (ART) in HIV prevention on 22 March 2023, where stakeholders were consulted about the forthcoming updated guideline recommendations on HIV undetectability, viral suppression, and the proposed use of all WHO pre-approved assay testing devices to widen access to viral load testing to realise the global 95–95–95 targets.

To realise the 10–10–10 global stigma and discrimination targets of the Global AIDS Strategy, where <10% of PLHIV and key population communities will experience HIV/AIDS stigma and discrimination, <10% of women, girls, and people living with and affected by HIV will experience gender-based inequalities and sexual and gender-based violence; and <10% of countries will remove punitive disabling legal and policy environments that deny or limit access to service and criminalise HIV exposure/transmission, same-sex relationships, sex work, and drug use, U=U should continue to be utilised as an effective anti-HIV stigma intervention, and be applied to address the intersectional gender and socio-legal disparities faced by women and key priority population groups. Further research is also warranted to determine the applicability of U=U, as related to injecting drug use as well as blood and organ donation by PLHIV.⁶⁵ Last but not least, the 30–80–60 global community targets in the Global AIDS Strategy calls for centring the HIV/AIDS response on communities where they will deliver 30% of testing and treatment programming and services, 80% of HIV/AIDS prevention and testing services, and 60% of societal enabling and protection programs will be delivered by community-led organisations. This must be supported by political leadership and renewed investments to further amplify community-led responses and community-led monitoring (CLM) of HIV/AIDS policies, programming, and services.

Strengths of this narrative review include that the article provides a more descriptive and historical recount of how the U=U Campaign originated, and it documents many of the courageous community partners who took a stance in advocating the science of U=U to be more widely disseminated. Limitations of this narrative review include that the scope of the literature search might not have been exhaustive, and that the policy analysis presented is one that is centred on the viewpoints of the community and not of all the relevant stakeholders that take part within the policy process.