What will it really take to end the HIV epidemic?

Gaining access to medication against HIV is just the first step towards creating health for PLWHIV and those at risk of it, it is not the last step … PLWHIV need health services, not just disease services, and we need to empower activists to shape them in ways that we lost after 1996, using radically old forms of activism with the radically new possibilities offered by digital technology.

Rupert Whitaker, plenary speaker

Over the past two decades, key advances in the global HIV epidemic have shown that treatment is available, rollout is possible, and prevention is viable. We have witnessed how the impact of increased global investment, improved access to ART, advances in treatment and prevention science, activism, community engagement, and strategic action to target periods of vulnerability to transmission, have caused HIV-related deaths to begin to fall, life expectancy to increase, and decreased HIV new infection rates in some areas of the world (UNAIDS, 2018). However, most recently, in the face of this emerging success, global interest and investment in HIV has begun to decrease (Oberth & Whiteside, 2016). Programmatic traction is urgently needed if the current ambitious targets on HIV prevention, treatment and care are to be realised. Complacency, funding constraints, structural barriers and competing priorities need to be tackled if progress is to be maintained and improved. In the face of these challenges, in the new Sustainable Development Goals era, a finely-tuned focus on vulnerable groups needs to be balanced with a holistic approach which looks beyond issues of mortality only (UNAIDS, 2017).

It is at this point in the epidemic that the 13th International AIDSImpact Conference took place in Cape Town, South Africa, in November 2017. The theme for the meeting was “What will it really take to end the epidemic?” It comprised 66 sessions over three days (http://www.aidsimpact.com/programme/draft) and welcomed 571 delegates from 56 countries, nearly half of whom benefitted from some form of financial support to attend. Participants represented academia, government, non-governmental organisations, and communities and came together to share lessons, analyse and debate behavioural and psychosocial aspects of ending the HIV/AIDS epidemic.

The conference was a showcase for cutting-edge science and innovation to prevent and treat HIV and gave form to the growing integration between the biomedical and social and behavioural approaches. While it is widely acknowledged that such integration will greatly benefit advances in HIV prevention and HIV treatment, it was during this AIDSImpact conference that participants were able to learn about contemporary initiatives that successfully embody this approach. Sessions focused on social and behavioural aspects of a range of diverse topics, including prevention, diagnosis, disclosure, treatment, adherence, and viral suppression. There was a special focus on the most vulnerable groups and specific communities hardest hit by the HIV/AIDS epidemic, such as migrants, sex workers, men who have sex with men, and injecting drug users. Using a life course lens, researchers focused on solutions to meet the needs of affected pregnant women, children, adolescents, youth, and middle and late adulthood. Contextual considerations such as poverty and violence were high on the agenda, as were comorbidities, such as mental health conditions, tuberculosis, and emerging concerns linked with aging such as cardiovascular disease.

A number of key themes emerged from active debate and discussion at the conference. Firstly, optimising retention in care is key to ending the epidemic, and will require exploration and improved understanding of context-specific barriers to remaining in care. Secondly, we need a continued focus on prevention for uninfected people at risk, including young women. An example of a pressing concern was the low rates of men seeking testing and treatment in many contexts, which affects their own health and is a factor contributing to continued high incidence in young women. The conference also created a space for participants to explore contentious issues in depth and assess the shortcomings of current approaches to ending the epidemic.

Papers included in this Special Issue provide an overview of the conference proceedings, and showcase some of the varied research and programming taking place to end the epidemic across different regions, countries and communities. We selected fifteen papers to reflect the main themes. The contributions to this special issue can be read together to present a picture of the most pressing concerns and emerging trends in research in relation to the epidemic today.

Firstly, barriers to care and retention in care are a key consideration in the selected papers. Clouse et al. (2018) explore the question of co-morbid epidemics of HIV and non-communicable diseases in South Africa. Working with a sample of postpartum women requiring chronic management of HIV and NCD, these authors found that access barriers and disrespectful treatment by staff hindered their engagement in follow up treatment, while social support and partner disclosure facilitated further engagement in care. Gwyther, Heap, and London (2018) examine access to palliative care for patients with HIV. Masquillier et al. (2018) reveal that the fear of breaches in confidentiality and HIV-related stigma can be potential barriers to the uptake of occupationally-based HIV services. However, these authors also show that a staff-driven occupational climate of fighting HIV-related stigma can have a positive effect on the reported willingness to access occupationally-based HIV services. The paper of Cockcroft, Marokoane, Kgakole, Tswetla, and Andersson (2018) presents report low enrolment in government structural support programmes by young women, and conclude that these programmes are not presently designed to benefit young women or to prevent HIV. Nkhoma et al. (2018) call for holistic symptom assessment, person-centred care and holistic management to respond positively to the End TB strategy in the context of HIV in Kenya.

Secondly, issues affected vulnerable groups are explored. Logie et al. (2018) reports on work in Swaziland with a sample of LGBT persons, highlighted structural marginalisation, community marginalisation and internal marginalisation as characterising the lives of HIV-affected sexual minorities in the country. Di Ciaccio et al. (2018) continue the earlier consideration of the LGBT community, offering findings from the ANRS-IPERGAY trial – a study of prophylaxis for HIV prevention (PrEP) for highly exposed HIV-negative men who have sex with men (MSM). Their qualitative study showed that the particular context of PrEP led some physicians to adopt a patient-as-partner approach during consultations rather than a paternalist or hierarchical approach. Rivierez, Quatremère, Spire, Ghosn, and Rojas Castro (2018) also consider PrEP, presenting qualitative data from a cross-section of twenty-four informal PrEP users, mostly MSM. These authors discuss the various user profiles of individuals likely to use PreP. In the same vein, Mitchell, Lee, Godoy, Asmar, and Perez (2018) consider HIV prevention interventions for male couples, specifically, if an eHealth HIV prevention interventions for concordant HIV-negative male couples – called MCAP – could be adapted to meet the relationship and HIV prevention needs of HIV-discordant and HIV-positive male couples, finding that it could, given that it consider include guidance about integrating the use of biomedical HIV prevention strategies into couple’s relationships.

Thirdly, two papers look at issues around broader health and well-being. Mabweazara, Leach, Ley, and Smith (2018) report the effects of a contextualised physical activity intervention amongst a sample of 21 HIV positive Xhosa-speaking women of low socioeconomic status in South Africa. The findings of the pilot study suggest that the intervention increased activity amongst the women. Goodin et al. (2018) explore intersectional health-related stigma – stigma that arises at the convergence of multiple health conditions, in their case, HIV and chronic pain. They found that individuals’ experience of both HIV and chronic pain stigma synergistically perpetuate negative mood in a more profound manner than experiencing either one stigma alone.

Finally, a number of papers look at issues across the lifecourse. Mebrahtu et al. (2018) examine the cognitive profiles of infants born to HIV positive mothers in Zimbabwe. They found that higher maternal depression scores were associated with lower overall infant cognitive score, indicating a need to provide psychosocial support to mothers living with HIV. Continuing the conversation about the younger generation of HIV-affected individuals, Gentz, Calonge-Romano, Martínez-Arias, Zeng, and Ruiz-Casares (2018) address the question of mental health, specifically those of children and adolescents living with HIV in Namibia these authors highlight the importance of social support, and orphanhood status, in responding to the needs of these adolescents. Sherr, Cluver, Toska, and He (2018) also direct their attention to adolescents, this time to the question of the differing needs of perinatally-infected youth as opposed to those who acquired infection behaviourally. These authors show that perinatally-infected adolescents are significantly more likely to be ART adherent, retained in healthcare, and treated well by clinic staff, whereas behaviourally-infected adolescents were more likely have depressed mood, anxiety, and problem behaviours. At the other end of the life course, Rosenfeld, Catalan, and Ridge (2018) turn our attention to the emergent issue of ageing in the context of HIV. Their research points to the complex overlaps between challenges to and strategies for improving or maintaining mental health and wellbeing in the context of ageing with HIV, and the limitations of the conventional “resilience” and “successful ageing” approaches to ageing with HIV.

The 13th International AIDSImpact conference took place in the region where HIV burden is at its highest, but also home to large scale innovation and programming to reduce its impact and end the epidemic. Lessons and experiences from the region are relevant across the globe, and the conference created an opportunity for delegates to share their common experiences, while acknowledging contextual differences, contributing further to the global HIV fraternity, as well as the global knowledge base.

The success of AIDSImpact relies on the energy every person who contributes to the conference, as they work together to share lessons and contemplate and plan for the future of the epidemic. We would therefore like to express our gratitude to everyone who was involved in bringing the conference to fruition, including local and international organising committees and partners, government, sponsors, the scientific committee, and all delegates and participants. We very much look forward to meeting again in 2019.

Acknowledgements

• Other local organising committee members: Connie Kganakga, Lifutso Motsieola, Wendee Wechsberg

• Zena Jacobs

• Gail Peddie

• Christina Laurenzi, Marguerite Marlow, Vuyolwethu Notholi, Loyd Ndamase, Stefani du Toit, Stephan Rabie, Sarah Gordon, Xanthe Hunt, Nicholas Dowdall and all team members of the Prevention Research for Child, Family and Community Health Research Unit based at Stellenbosch University, Stellenbosch, South Africa, and Mokhotlong, Lesotho who assisted with the conference preparation, organisation and management

• International board committee members: Lorraine Sherr, Jose Catalan, Barbara Hedge, Lucie Cluver, Udi Davidovich, Bruno Spire, Richard Harding, Bridgette Prince.

• Support and technical services from Maria Oud, Yoni Sherr, Jake Taylor, Kathryn Roberts

• Sponsors:

  • - South African National AIDS Council

  • - Stellenbosch University

  • - RTI International

  • - The London School of Hygiene and Tropical Medicine

  • - Coalition for Children affected by AIDS

  • - Community Care Study

  • - ViiV Healthcare

  • - Taylor & Francis Group.

  • - UCL Institute of Global Health

  • - Gilead

  • - GGD Amsterdam

  • - ASPIRES FHI 360

  • - PEPFAR

  • - USAID

  • - AIDSCARE

  • - UCLA

  • - PATA

  • - The Teresa Group

ORCID

Sarah Skeen http://orcid.org/0000-0002-7464-2861

Mark Tomlinson http://orcid.org/0000-0001-5846-3444