The power for action – now!

Despite HIV treatment advances, the COVID pandemic, the innovation of provision via the Global fund and several decades of understanding, the fight is not over. As always, there still seems to be an urgency to focus on the people behind the HIV pandemic. In 2023 the 15th AIDS Impact conference convened in person in Stockholm Sweden. This marked the end of the COVID-19 hibernation, lockdown and virtual meetings and was welcomed with gusto by over 500 delegates covering 46 countries. The conference was set in an environment which underscored the importance of the lived reality of the community, the interaction between physical and mental health, personal and community wellbeing and the human experience. The programme consisted of 20 plenary talks, 62 oral sessions, and 147 abstracts presented at the poster exhibitions over three packed days. The programme included breakfast and lunchtime discussion sessions and opportunities to network throughout the days. From this in depth programme (https://www.aidsimpact2023.com/programme/) a number of key themes emerged and the meeting provided a time to reflect on gains to date, the state of the knowledge base, to share learnings and to pinpoint areas of need, next steps in the agenda and consolidation of topics.

Great strides have been made in prevention, treatment and care. This despite notable changes to the landscape, interrupted by global pandemics, economic downturns, funding challenges and a growing rather than reducing need for those affected by HIV. Under the umbrella of prevention a series of sessions were devoted to PrEP and PEP looking at the impact and uptake of these technologies and how populations adapted and adopted to their availability. The area of treatment and care provided a platform to show multiple considerations, interventions and progress. Mental health was seen as an emerging priority area – not that mental health had not been present from the start, but the conference reflected the growing acknowledgement of the importance of mental health and how it played a part in the experience of illness, the adjustment and behaviour for all those affected. The conference also provided a platform for in depth examination of child and adolescent issues, often overlooked, sidelined or shadowed by the focus on adults. Prevention potentials and care management was another emerging pillar with new ideas, evaluated evidence and articulated challenges. The meeting provided an integrated and open forum, driven and guided by the community, researchers, providers, policy and advocacy specialists and delegates from the health, care and psychosocial arena. As such it represented a rather special and somewhat unique platform for holistic thinking and planning, an opportunity to reflect, learn and be energised as well as a welcome return to networking and inspiration. Of striking note was the global representation of research and the strength of contributions from low and middle income countries, which reflects both the prevalence of HIV in these countries, in particular South Africa, and the expertise and maturity of the emerging researchers. This move with more balanced leadership is a notable trend and a welcome advance in the pursuit of equity and local expertise and leadership. This was enabled by the supported attendance for more than 10% of delegates. This special issue of AIDSCare reflects but a small taster of the range of research in area and provides some insight, although not fully comprehensive, to the current findings.

Mental health and person centered provision

HIV infection is today a chronic disease. It requires lifelong medical antiretroviral treatment to which people must adhere in order to reach viral load suppression. We also have to acknowledge a growing population of ageing people living with HIV as more people on ART live longer, at least in the western part of the world.

The World Health Organization strategy emphasizes the importance of person-centered chronic care for people living with HIV and acknowledges that viral suppression is not the ultimate goal of treatment (WHO, 2016). People living with HIV who have achieved viral suppression may also struggle with challenges such as mental health concerns, other non-communicable diseases, financial stress, HIV-related stigma and discrimination. Thus, Lazarus et al. (2016) has proposed a new “fourth 90” pillar in the HIV treatment cascade, indicating that 90 percent of those with viral suppression, would have a good mental and social quality of life. But one could also argue that good quality of life should be applied to all people living with HIV regardless of viral suppression.

Active engagement by people living with HIV alongside their health care providers (HCPs) and patient-provider communication are critical for retaining people living with HIV in care and ultimately achieving good quality of life. Yet, the goal of quality of life is challenged as those with stable HIV are in general supported by 20 to 30 minutes face-to-face routine clinical consultations with an HIV clinician once or twice a year – with even lower rates of clinician contact in low-income settings. Such a consultation context raises a pertinent issue of how communication could be improved, which is highlighted in this special issue by a qualitative survey conducted in the United Kingdom (Claisse et al., 2023). Both people living with HIV and HCPs were in favor of face-to-face consultation. Participants with HIV underscored the value of seeing the same clinician over time for building trust and confidence, a “professional friendship”, and for providing continuity of care. However, they also expressed hesitancy to the possibility of building such long-term relationship given the recent changes in care provision. HCPs on their part stated that long-term relationship could help with managing complex physical, psychological and social health issues. Both parties agreed they should always have the option to be referred to another HCP. As a consequence of the COVID-19 pandemic, face-to-face consultation has often been replaced by virtual communication. It was perceived by participants with HIV as impersonal, lack of control of personal information and to hamper relationship building. In relation to delivering Whole-person care, participants with HIV highlighted the role that HCPs have in signposting to peer support resources for physical, mental and social wellbeing. There was consensus between both parties “that health organisations could work more closely with HIV charities".

Despite effective antiretroviral treatment, mental health problems including depression, anxiety, suicidal ideations, suicidal attempts and suicide continue among people living with HIV (Ohema et al., 2024; Wang et al., 2024). Wang et al. (2024) emphasize the importance of acknowledging adolescents and young adults with HIV as they are at higher risk for mental health problems compared to their peers who do not have HIV. In their paper they discuss the rationale for a shift from a risk-focused only approach to one that examines adolescents and young adults’ needs from both a risk and resilience perspective. Ohema et al. (2024) studied suicide and depression among people living with HIV in China. They found a higher prevalence of suicide among people living with HIV than among the general population. The proportion of deaths caused by suicide was the highest in the 15–24 age group. Depression was highest in the 25–34 age group. Moreover, the prevalence of suicide and depression were higher among male gender than female gender as well as among MSM compared to heterosexual men.

Efforts within the health care system to offer care and support to people living with HIV and mental health problems are jeopardized due to limited resources. It is thus legitimate to raise a red flag for the risk that, in sharp contrast to World Health Organization strategy, the focus on person-centered and the Whole-person care for people living with HIV are weakening. Innovative provision modalities are currently underway, but these are a short term substitute for expertise, resources, infrastructure and skill feeding in at all levels.

Children and adolescents

Historically the HIV research community has always held vulnerable groups and hard to reach minorities in focus. Curiously children have often slipped under the radar in this endeavour. This is surprising as children are often the majority of populations and in some countries represent the epicentre of the HIV epidemic. Presentations and posters showed an emphasis of research on children and adolescents in the hardiest-hit region of Africa, with growing evidence to help us understand how to deliver effective services. For adolescents, research identified the challenges of how we can navigate the complexities of social, romantic and emotional changes, within overburdened health systems. The conference provided a rich forum to explore and understand the HIV issues in childhood and adolescence. UNICEF defines a child as 18 years and younger and WHO an adolescent as 10-19 years. This encompasses a wide range of ages and stages from infants through early childhood, teenage issues and then emerging adults. Children are both infected and affected by HIV and complex family and community circumstances need to be understood to explain and intervene in childhood risk as well as management. The sessions on children explored these many facets. Furthermore issue based sessions included perspectives from children. The selection of papers in the special issue examine how childhood experience matters (Kidman et al., 2024), barriers to treatment (Nice et al., 2024), adolescent needs in terms of testing and education (George et al., 2024), the priority needs for paediatric provision (Gittings et al., 2024), share HIV-status (Li et al., 2024) and engagement of boys and young men in HIV care (Makusha, 2024). As such it reflects the broad needs of children and the importance of research focussed on this life stage.

Quality of life remains a major challenge for people with HIV, a much of the evidence reported at AIDS Impact 2023 identified factors that influence the physical and mental health dimensions of quality of life. Engagement in care and sustained access to treatment were identified as crucial for children and adults to achieve optimum physical health, while evidence of comorbidities highlighted the importance of optimising quality of life as people age. Mental health dimensions of quality of life pose a persisting challenge throughout the life course, and are manifest in the large research focus reported on stigma.

Biomedical prevention has become in this conference the centre of many communications. More specifically, pre-exposure prophylaxis (PrEP) led to excellent presentations from an important number of groups throughout the world. Experiences, needs and new problematics concerning people who are taking PrEP were widely discussed in a special speedy session entitled PrEP Carousel. This session was able to contrast countries where the needs of biomedical prevention are sparsely covered by PrEP and more favourable settings where new forms of Long-Acting PrEP will soon be available. Advocacy seems necessary to prevent a PrEP gap between countries, especially in those where prevention is urgently needed. In other PrEP sessions we also learned about the specific needs of PrEP users in places where PrEP has been widely implemented. We learned that users desire more flexibility in how they can reach and use PrEP. We heard of initiatives that tried to provide such option through provision of PrEP and related counselling online or reducing the number of follow up visits and control from the regular 4 times a year to twice a year. We also learned that once implemented, PrEP use doesn’t always achieve the desired impact. With reported stopping rates globally of higher than 40% we heard at the conference that a worrisome number of those who stopped using PrEP has seroconverted for HIV within the first year post PrEP cessation. In that presentation we also learned of some of the reasons for the PrEP cessation which emphasized the need to assist PrEP users with safely stopping with their PrEP regiments if they choose to do so. We were reminded in the conference that HIV prevention remains a mix of different strategies from behavioural to biomedical and that individuals can switch back and forth between these available strategies and need support to do so successfully. Papers in this cluster include understanding PrEP Uptake (Wang Haoyi, 2024) and Understanding PrEP Use (Kelly et al., 2024; Oliveri et al., 2024)

Stigma was a recurrent theme also during this conference. Even if there were some research displaying positive trends regarding public attitudes towards people living with HIV in parts of the world, there were also presentations showing that issues such as enacted HIV-stigma and discrimination still exists even in healthcare settings. Presentations confirmed internalised stigma as an obstacle associated with adverse health effects, especially related to mental and sexual wellbeing. Parallels were drawn to the dynamic sessions on COVID-19 and Mpox pandemics, illustrating new dimensions in the complex interference between different sources of stigma and emphasising the value of mental health and social support to strengthen resilience to stigma. Interesting developments were presented regarding theory and interventions to tackle HIV stigma on both societal, community and individual levels. In the present special issue, Amirkhanian et al´s, (2024) qualitative study highlights the value of societal ties as a buffer for experiencing stigma in MSM living with HIV in Russia. Furthermore, Makusha (2024) stresses the significance of gender-responsive interventions and multi-sectorial interventions to tackle HIV- related stigmatisation in boys and young men in sub-Saharan Africa.

Broader considerations

The cluster of papers reveal the need to spread the net widely and to consider a variety of broader issues. Three such issues serve as examples of the wide reaching insights, and included the impact of the COVID pandemic on the HIV arena, a multitude of treatment and care issues and a depth understanding on relationship factors. Overlapping pandemics. Covid lessons and impact (Mawoyo et al., 2024) for risk behaviour and also how HIV affected individuals fared during the crisis (Babalwa et al., 2024) and heightened risk behaviours such as drug use (Starks et al., 2024). Treatment and care issues such as ART adherence (Safren et al., 2024), measuring health care continuum (Liang Li Jung, 2024), and the importance of relationships in adherence (Jopling et al., 2024). Relationship issues understanding in different contexts such as transactional sex (Magni et al., 2024), how couples testing uptake can be understood (Abdelkhalek et al., 2024) using social networks as a strategy to identify HIV (Rwabiyago et al., 2024) or engagement of couples into various research initiatives (Noorman et al., 2024).

Finally the conference gave some insightful ideas of how to revitalise the HIV response, with strengths from big data, from funders, from community researchers who have particular skills and insights to offer (Namiba et al., 2023) or looking for inspiration from social science Humanities and arts (Van Rooyen, 2024). This shows the importance of research and how it is crucial not to sacrifice research funding in the wake of the global declining funding of HIV. Investment in research and community research is the only way to continue to bring answers to unexplored or underexplored areas of HIV prevention and care. This conference clearly showed depth of understanding, breadth of coverage and width of thinking. Such knowledge and conceptual excellence will feed into the knowledge and action base to provide power for action in line with the theme of the meeting.

Acknowledgements

Bill & Melinda Gates Foundation, ViiV Healthcare, Gilead Sciences, Routledge/Taylor and Francis, AIDSCare, AIDSImpact, The Gender Center at Research Triangle International, Noaks Ark Association, New Science of the HIV Prevention Cascade, Manicaland Centre for Public Health Research, Imperial College London (UK) and Biomedical Research and Training Institute (Zimbabwe). With thanks to the delegates, volunteers, committee members who all gave of their time and expertise as well as to the community we serve.