Opinion: Engaging communities and young people in the HIV response

Top South African HIV clinicians are setting their sights on different approaches to finding an HIV vaccine after the "disappointing" news that the Mosaico trial was stopped early because the vaccine did not show any efficacy.

The AIDS2022 conference held recently in Montreal, Canada highlighted yet again the need for community activism and the importance of the involvement of young people. While these calls are not entirely new, they come at a time when the global HIV response appears to be faltering in the wake of the COVID-19 pandemic, the Russia-Ukraine war, and the general economic downturn.

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The latest UNAIDS report, titled ‘In Danger’, noted that 2021 saw the smallest decline in new HIV infections globally in years – the lowest since 2016. Equally concerning, is that some parts of the world (Central Asia, Eastern Europe, Latin America, the Middle East, and North Africa) have seen increasing rates of new HIV infections. It is not surprising, therefore, that at AIDS2022 there have been strident calls for the global community to do more if we are to reach the goal of ending HIV as a public health threat by 2030.

The enormous gains made in the fight against HIV are in jeopardy @UNAIDS @Winnie_Byanyima warned at #AIDS2022. We share 4 takeaways from the conference that are helping get the response back on track.➡️ https://t.co/0CZRVQgKvs pic.twitter.com/WY6h6y9G4K

— CHAI (@CHAI_health) August 4, 2022

The Global Fund’s #Fightforwhatcounts campaign asks the global community to contribute $18 billion to save 20 million lives.

UNAIDS Executive Director Winnie Byanyima called for greater political will to put the “AIDS response back on track” to ensure that we stop AIDS deaths amongst children and empower adolescent girls and young women – who are three times more likely to be infected with HIV than their male counterparts. She noted that it was clear what needed to be done to get the HIV response back on track. The interventions included – “community-led, people-centred services, the upholding of everyone’s human rights, the removal of punitive and discriminatory laws, and the tackling of stigma; the empowerment of girls and women; equal access to treatment including new health technologies; and health services, education, and social protection for all”.

These are not new suggestions as they have long been touted as solutions to the HIV epidemic. During the COVID-19 pandemic, it was also noted that inequities, discrimination, lack of community-led responses, and lack of access to health and social services also contributed to the spread of the COVID-19 virus.

In eastern and southern Africa, adolescent girls and young women continue to bear the brunt of the HIV epidemic. UNAIDS estimates that globally, 250 000 adolescent girls and young women aged 15 to 24 years, were newly infected with HIV in 2021. Of these more than 200 000 live in sub-Saharan Africa, with more than 136 000 in eastern and Southern Africa.

So how can a re-imagined HIV response in South Africa be community and youth-led? And how can such approaches be institutionalised?

The 2023-2027 National Strategic Plan (NSP) for HIV, STIs, and TB is currently being drafted, led by the South African National AIDS Council. Writing in Spotlight and the Daily Maverick earlier this year, Marcus Low noted that there is a need for this NSP to be different – to write it with people in mind “not just as passive recipients of government services, but as people who have a personal stake in the plans – and who might actually want to read and understand the NSP”. It can be argued that this NSP, both in its writing and its implementation, needs to go much further.

So, how do we write an NSP for the people whom it most affects – those living with HIV, TB, and STIs, those at risk of contracting these diseases, and those that should care about who gets infected and who gets treated?

The new NSP must be about greater resolve to meet the 2030 targets of ending HIV as a public health threat. For this to be realised, communities must be engaged in the conceptualisation and writing of the NSP and community-based organisations must have a central role in key aspects of its implementation. Equally, if the youth are most affected by HIV, they should be central to the production and execution of the NSP.

In a democratic dispensation based on representative democracy, such as we have in South Africa, it is not always a given that local organisations will be empowered to design, implement, and/or oversee the implementation of programmes. However, there are opportunities to ensure that this can happen over the next five years.

Only half of children living with #HIV are on life-saving treatment.@UNAIDS , @UNICEF , @WHO and partners have launched a new global alliance to end AIDS in children by 2030.@Winnie_Byanyima @unicefchief https://t.co/L1VY5cBbIg

— Chema Vera (@Chema_Vera) August 4, 2022

If the South African National AIDS Council (SANAC) (at national, provincial, district, and ward levels) is provided with sufficient authority and resources and it is staffed with people with both technical and advocacy skills, increased community and youth-led programming may be possible. Secondly, if more community-based organisations, especially those led by people with HIV and TB, such as the Ritshidze project, are funded and have the expertise to monitor programmes at local level, there will be greater accountability and more rapid interventions with challenges like lack of confidentiality and medicine stockouts which arise in public health facilities. The Ritshidze project was deservedly acknowledged during AIDS2022 with PEPFAR’s Civil Society Partnership Award. The need to fund community-based organisations was also made clear by others ahead of AIDS2022.

Young people too, need to be included in the response to HIV and STIs as UNAIDS noted in 2018, with three approaches to strengthen youth participation by supporting them as beneficiaries, partners, and leaders. However, none of this is possible without a change in the funding environment and being at the table as decision-makers. Amongst others, this means increasing funding to youth organisations, upskilling the youth, and ensuring that young people are in the various sectors of SANAC and not only in the youth sector.

AIDS2022 can be a global watershed event if, from now onwards, the balance of power for decision-making, implementation, and monitoring is shared between technical experts and community and youth-led organisations working at every level of society – globally, nationally, and locally.

*Dr Pillay is extraordinary professor in the Division of Public Health and Health Systems, Stellenbosch University, and a former Deputy Director-General at the national Department of Health.