This two-part World AIDS Day series ties in with this year’s theme: “End inequalities. End AIDS.” The theme puts special focus on the growing inequalities in access to essential health services that affect millions of people – and not only in resource-poor countries. HIV still remains a major public health concern, with around 1.5 million new infections and 680,000 deaths in 2020 alone; and as long as social disparities, injustice and human rights in HIV prevention and treatment remain unaddressed, it is likely to remain a global health crisis. Our first blog highlights the myriad of ways in which social sciences have made a difference to HIV programmes over the past 40 years, and will continue to do so.
Adam Bourne, Susan Kippax and Sarah Bernays are coeditors of a recently published Springer book Remaking HIV Prevention in the 21st Century: The Promise of TasP, U=U and PrEP.
Adoption of condoms
A major contribution was one made during the 1980s in the very early days of the epidemic. It was the recognition by gay and bisexual men that condoms were effective in preventing HIV transmission. The role of that community and, later, the community of sex workers in their adoption across the sex industry of condoms, was central to much of the world’s initial success, and condom use continues to be an effective strategy in regard to sexual transmission.
Leadership of communities
The success of this response was in large part due to HIV/AIDS messaging by communities for communities. Knowledge derived from social science helped the world to understand that prevention approaches needed to be ‘bottom-up’ to be successful instead of being ‘top-down’.
Another effective HIV prevention practice initially called ‘negotiated safety’, which also emerged from gay community, was based on social science data. This strategy became known later as ‘serosorting’. It was based on the practice of testing and then in the case of sexual partners having the same HIV serostatus, discarding the use of condoms.
Regarding HIV transmission between injection drug users, public health researchers supported by social scientists cast a light on the cultural and structural barriers to safer drug use. The legalising of access to sterile needles and syringes in many countries enabled injection drug users to avoid HIV transmission.
Underpinning and enabling these three contributions was the building of shared knowledge amongst a very varied set of experts: public health officials, clinicians, social scientists, epidemiologists, community members (gay men, sex workers, and injection drug users) and government ministers and bureaucrats. They worked together and respected and learnt from each other. Furthermore, the general public responded to the very frank and open discussions on homosexuality, injection drug use, and sex work. These early beginnings paved the way for the prevention strategies that followed from 2010 onwards: PrEP (pre-exposure prophylaxis) and TasP (treatment as prevention)/U=U (undetectable = untransmissible) strategies.
HIV is the exemplar infectious disease in proving, with devastating effect, that it is as much a social ‘problem’ as it is a clinical one. HIV has shown us that the ‘social life’ of infectious diseases have the pernicious power to further marginalise communities and to exacerbate existing fault lines of inequity. The life course of the HIV epidemic to date has also demonstrated that engaging with social justice is core to any successful HIV response. Biomedical advances, such as PrEP, have not diminished the importance of addressing inequity in determining whether we can keep everyone safe.
We can be heartened by the fact that in some countries – at least among certain populations – the number of new HIV infections is in significant decline, largely due to suppressed viral load and to the effectiveness of PrEP. This is a remarkable feat worthy of celebration, but its effects are not being felt evenly or equitably.
Our attention needs to turn to those holding multiple marginalised identities. Often referred to in terms of ‘intersectionality’, there are a myriad of ways in which social science can seek to build new knowledge about how those within further marginalised communities (e.g., Asian migrant gay men, black gay men, first nations or Indigenous peoples) are impacted by HIV as well as the social, cultural and structural forces that shape their heightened vulnerability to the virus.
Ditching pills for injections?
A key innovation currently being trialled in biomedical prevention is long-acting injectables, in the form of both PrEP and Anti-retroviral treatment (ART). Scientists believe that if compliance no longer involves only having an injection every three months instead of remembering to take the pills each day, the burden of treatment engagement will reduce and this will improve clinical outcomes. But to ensure that these interventions are widely used a range of issues still need to be addressed: Will injectables be acceptable, and to whom and where? Will they improve the appeal of biomedical prevention and translate to increased uptake? How will these interventions change the nature of relationship between individuals and the ‘clinic’?
You are no longer ‘a risk’: Talking about U=U
In 2017 the U=U message became a defining feature of the HIV response in most resource-rich settings. In theory U=U is a game-changer. For it to work people need to know about it---and understand it. But science communication around the relationally and socially enabling effects of viral suppression has been uneven across the world. This is partly due to limited access to reliable and regular monitoring testing at scale in resource-stretched settings, which undermines confidence in the safety of the U=U messaging. With increased investment, viral load monitoring is increasingly being delivered as the standard of care and nations are developing policies about how best to locally engage in the opportunities of the U=U messaging.
Despite the potential liberation of the U=U message, there remains a reluctance at national policy levels to discuss this with some groups, for example, adolescents. This highlights the layered political and social agendas driving the delivery of clinical messaging. Social science will be pivotal in advocating with communities for equitable access to knowledge about transformative biomedical advances and for locally tailored messaging.
Is wellbeing the pathway to viral suppression? Investing in mental health to improve overall health.
There is now greater acknowledgment of the role of mental health in supporting sustained viral suppression. This is reflected in substantial increase in resources being directed towards mental health interventions. However, within HIV programmes and global health more generally, there is greater focus on individualised (and individualising) interventions. For HIV programmes this is predominately to do with pathologising and treating mental health conditions. But, as with much of HIV prevention, we need to also invest in structural interventions which engage with how the psychosocial connects with economic, social and relational concerns. Recent research has shown that such interventions can be delivered at scale even by lay community members.
Structural interventions involve taking a wider view: looking at more indirect and broader indicators of impact. This complexity can be viewed as risky because it is more difficult to measure. The reticence to approach mental health in a more systemic way, rather than narrowly investing in biomedical interventions, reflects both an ongoing biomedical and evidentiary bias. Our ability to measure an outcome shapes our ambition of what can ‘work’. Social science’s contribution to the HIV response to date highlights the damage done by minimising the effects of social context on infection control and presents a broader vision for thinking about how to move forward.
At the time of writing this blog, high-income countries such as the UK and Australia have achieved COVID-19 vaccination rates in excess of 80% of the adult population. This figure stands at 4% for countries in the African continent; the highest in South Africa still only reaching 40%. Only one in four healthcare workers in Africa have been fully vaccinated. In terms of COVID-19 infection, many countries show significantly higher infection rates, morbidity and mortality among ethnic minority populations and those in more economically deprived circumstances. In sum, the COVID-19 pandemic has, to many extents, mirrored many of the very same inequities that have been evident in the HIV pandemic throughout the past 40 years.
Social science has taught us that the existence and availability of clinical or biomedical technologies do not necessarily lead to their utilisation. It has provided knowledge about how and why people may, or may not, choose to take up HIV testing or treatment. Social science in the field of HIV has taught us that we need to earn and maintain the trust of especially marginalised communities if we are to ensure their meaningful and ethical engagement with new biomedical technologies; and it has taught us that there is never a one size fits all intervention that will meet the needs of every community.
This knowledge has advanced our ability to communicate effectively with people who may benefit from biomedical technologies by improving understanding of what they value, what motivates them and what would make the biggest difference in their everyday lives. It helps us understand why even though we now have 27 million people on HIV treatment, equating to the highest global coverage (73%) in the history of the epidemic, we are still missing enormous numbers. The social sciences have illuminated the conscious and unconscious biases that shape the provision of clinical services in ways that may impede access for those who actually need them the most. This has also created new knowledge regarding the practices that people at greatest risk of acquiring the virus.
All of these discoveries have relevance as we seek to combat the COVID-19 pandemic. As we approach two years since the novel coronavirus first emerged, we already see many of the same concerns regarding health equity and ethical practice emerging, and social scientists – including those trained specifically in HIV – can contribute much to the global health response.
About the contributors
Adam Bourne is Associate Professor of Public Health and Deputy Director of the Australian Research Centre in Sex, Health and Society at La Trobe University in Melbourne. A health psychologist by training, Dr Bourne has led numerous studies examining the perception and management HIV related risk among gay, bisexual men and other men who have sex with men in the context of new prevention technologies, as well as treatment and care experiences of those living with diagnosed HIV. His work extends across Europe, Eastern and Southern Africa, South East Asia and Australia and incorporates HIV related research among people who use drugs (particularly in sexual contexts) as well as female sex workers.
Susan Kippax is a Fellow of the Academy of the Social Sciences of Australia. She is Emeritus Professor in the Social Policy Research Centre, University of New South Wales, Sydney, having retired from the position of Director of the National Centre in HIV Social Research (1995-2007). Professor Kippax has over thirty years has an extensive research track record in the areas of sexuality and health and has published a number of books and research papers. She played a central role in framing Australia’s response to HIV/AIDS and served on many international and national advisory panels and committees.
Sarah Bernays is a Senior Lecturer in Global Health at University of Sydney and an Associate Professor at the London School of Hygiene and Tropical Medicine. An anthropologist by training, Sarah leads a participatory qualitative research programme in Southern Africa focused on designing and evaluating interventions with young people to strengthen interventions to support youth engagement in HIV prevention and treatment, with a particular focus on mental health. She is a member of the WHO advisory group Adolescent HIV Service Delivery and has led their work on youth engagement in developing up the most recent WHO Global Guidelines for Adolescent HIV.
About our guest contributor
Shinjini Chatterjee is Senior Editor, Social Science Books, Springer. She has been a social science publishing editor since the mid-2000s and has worked with Springer since 2012.