IAS 2023: Rapporteur summary Track D – social and behavioural science

1 September 2023. Related: Conference reports, Treatment strategies, IAS 2023 Brisbane.

Simon Collins, HIV i-Base

The following report is based on an edited transcription of the rapporteur summary at the end of the conference, with additional original content added for some of the selected studies.

This issue of HTB includes summaries from Tracks A and C as Track B was included in the previous issue.

The rapporteur summary for Track D was given by Bridget Haire, senior research fellow from the Kirby Institute in Sydney, and included 18 talks and presentations. [1]

• Overview: Stigma, decolonisation and sex cultures.
• Social life of testing.
• Social life of prevention: PrEP choices.
• Social life of treatment: Uganda after the Anti Homosexuality Act.
• Stigma and decolonisation.
• Sex cultures, sex-positivity and chemsex.
• Conclusions.

Overview: Stigma, decolonisation and sex cultures

The premise of social research is that we operate in complex and multi-layered relational systems, including the macro or structural level, the meso or the social community level and the interpersonal and intimate. From this premise, although we understand that technologies that address HIV are necessary and valued, they are not in themselves sufficient to change the trajectory of the epidemic without lubricating social pathways. And as this is HIV, there are a lot of complex and intertwining social pathways that need a great deal of lubrication.

This overview covers the key thematic areas of the social and behavioural research presented at IAS 2023.

This includes examples of the social lives of HIV testing, HIV prevention and HIV treatment. It also involves the big thematic issues of stigma and decolonisation, and examples of the context of sex cultures.

Social life of testing

• Simplify, de-medicalise and increase access.
• Optimising use of social networks.
• Removing barriers by providing supportive mechanisms for self-testing.
• Racial inequalities in HIV testing in adolescent MSM and transgender women in Brazil.

In plenary PL03 on combining approaches to community engagement, we heard from Victoria McDonald about the social life of testing and that social networks have been identified as a way of optimising testing to meet HIV elimination goals. This included the critical necessity of removing barriers by providing supportive mechanisms for self-testing – so self-testing alone is not going to solve the issue of getting testing to the people who need it. We need to actually provide the ways to do that. [2]

We also saw a presentation by Marcus França that described racial inequalities in HIV testing, showing in adolescent MSM and transgender women in Brazil. [3]

Social life of prevention: PrEP choices

• The dapivirine vaginal ring, with modest efficacy, was roughly as popular as oral PrEP in Zimbabwe – although only 60% were still using either option after only four months.
• Effective harm reduction is also HIV prevention – new data on barriers to methadone services (fears about methadone, lack of access, stigmatising language by service providers).
• Relative ineffectiveness of doxy PrEP in Kenyan women, linked to adherence.

In terms of the social life of prevention, one study showed that with modest efficacy, the dapivirine ring was preferred by women in Zimbabwe to oral PrEP. [4].

The answer to the audience question: ‘Why was this, what was the difference?’ was that the ring is easier to hide from their families, which is significant in understanding the lived experience and the ways in which people need to work to incorporate HIV prevention into their social lives.

Editorial note: The difference in retention at four months was only 64% (95%CI: 59 to 68%) with the ring vs 59% (95%CI: 56% to 57%) with oral PrEP and is not significant.

Although the rapporteur’s references to barriers to harm reduction in a US study (study not referenced) included fears about a particular drug intervention, lack of access to harm reduction and stigmatising language by service providers, it also included a comment that this was old news and that “after all these years we are still facing issues like these in providing effective prevention services”.

Editor’s note: new data on barriers to harm reduction included a late-breaking oral abstract about Kazakhstan prisons during COVID, where prisoners discontinued HIV and TB meds to become hospitalised, thinking this might enable access to substitution therapy that was otherwise discontinued. [5]

And despite the relative ineffectiveness of doxy PrEP in Kenyan women, which we saw some further information about today, we now understand that the reason that doxy PrEP was not working in the Kenyan women’s study was an adherence issue [6].

And again, this raises the question: what do we need to do? How do we need to change our approaches to assure that novel ways of addressing STIs are actually getting to the populations that need them? How do we change to actually incorporate lived social lives in the way that we provide HIV and STI prevention?

Social life of treatment: Uganda after the Anti Homosexuality Act

• Providing uninterrupted HIV treatment in Uganda following the Anti Homosexuality Act (26 May 2023).
• PEPFAR: 84 drop-in clinics for key populations; confidentiality and safety paramount.
• Telehealth; home delivery; enhanced legal and social protection; reporting innovations with enhanced security.

A late-breaking oral abstract described the impact of the horrific legal discrimination against LGBT people in Uganda with sentences from 10 years to the death penalty. This law also criminalises anyone who knowingly supports or helps LGBT people, i.e. that could be interpreted as providing health care and failing to report them. [7]

The reach of this law, hurriedly passed in May 2023 during a political corruption scandal, included high-profile media campaigns (“they are coming for our children”) from the beginning of the year, which scared many people from attending HIV services – with one clinic dropping from 40 weekly clients down to 2.

This meant that the implications were also being discussed at IAS 2023 in terms of the impact on UNAIDS-defined key populations and the global PEPFAR programme. The political context, however, as noted in the presentations, is significantly more important than the impact on health.

This dual presentation included Natalie Brown, the US Ambassador for Uganda, on the harm that is already being caused. This includes people being denied treatment and being reported to the police when they seek treatment, to be fired from their jobs, evicted from their housing and be at increased vulnerability to physical and sexual assaults.

PEPFAR currently supports 84 drop-in centres (“no questions asked”) in Uganda for key populations, providing HIV treatment for more than 1.3 million people. In response to dwindling use over the first six months of 2023 these centres have increased training and structures about confidentiality with new safety protections, and introduced new ways of delivering services that include telehealth and home-based delivery of ARVs. PEPFAR tracked the impact of the recent legislation with anonymised data and these measures have so far helped reconnect people to their services.

Changes in the way key populations are reported for safety reasons must also ensure that people are not erased from the data – particularly gay and bisexual cis men and people who are transgender.

Other late-breakers included a survey of people who had mpox last year who were asked about their positive and negative experiences of healthcare, and a survey of health workers providing HIV services in Mozambique, where educated and more knowledgeable people living with HIV were seen as difficult and more of a problem… [8, 9]

The rapporteur thought that this last point was interesting “given what we usually think about educated people actually having better access to treatment.” This misses the point that the confidence to be able to question a health provider often implies a more privileged position and that this often results in being seen as a difficult patient. The survey was about health workers’ stress and non-questioning patients are no doubt easier to treat – but they don’t necessarily get better healthcare.

Stigma and decolonisation

Stigma was another common theme of this conference, including an oral abstract session looking at insights and interventions to tackle stigma (OAD02) and a symposium looking at a history of HIV-related social science and going forward into the next decade (SY02).

Conceptual critiques of stigma are sometimes limited too much to the interpersonal (or micro level) and not extended out to the structural level, which has a very important impact. Symposium 2, Kane Race from the University of Sydney talked about the importance of recognising stigma as macro and as impacting on populations when planning for the next ten years. [10]

The session also included a talk by Catherine Dodds from the University of Bristol about the individualised and apolitical conception of stigma that sometimes dominates international HIV research and targets. [11]

The critical importance of locality in understanding what stigma is and how it actually impacts on affected people was emphasised again and again.

Oral abstract session 2 also included research on measurement of and responses to internalised and interpersonal stigma and CBT as a psychological intervention. [12, 13]

Decolonisation was another critically important overarching theme in the conversations at the conference.

• Who gets to attend conferences?
• Who gets to speak and shape the conversation?
• Whose knowledges are valued and influential?
• How do we think about and ‘centre’ the local in global HIV and health?

James Ward from the University of Queensland Poche Centre for Indigenous Health gave a plenary talk about the excruciatingly bad influence of colonial history in shaping Aboriginal and Torres Strait Islander people’s experience of STIs, including the devastating example of Lock Hospitals with people effectively being incarcerated. He also demonstrated how community engagement can reframe health promotion and identify pathways to overcoming entrenched stigma. [14]

Deevia Bhana gave a symposium talk about how the history of HIV interventions has been shaped by colonial paradigms, by power imbalances and Western-centric perspectives, limiting our progress to actually understanding HIV where it is occurring in the world today and addressing the complex challenges of the epidemic. She advocated for the centring of the experience of communities in their specificity and in their locality. [15]

Sex cultures, sex-positivity and chemsex

In a marvellously sex-positive symposium we heard trans people and other members of key populations discussing chemsex, with one qualitative study talking about it operating as a coping mechanism that can reduce inhibition and allow non-judgemental exploration of sexuality. [16]

Other discussions however did include the negative role that chemsex might play in ongoing epidemics.

Symposium SY18 also discussed emerging sexual cultures and social contexts that pose unforeseen challenges to ongoing efforts to meet the 2030 targets. [17]

The rapporteur also commented on the changing roles of social science, including a quote from the talk by Gary Dowsett. [18]

“Social science was indispensable in moving beyond quantifying HIV, introducing ideas about structural drivers and social determinants to public health, and revealing how the epidemic is deeply shaped by knowledge systems, cultures, politics, economics, history.”

This was from a talk about 40 years of responses from social science to HIV. Whilst he was talking about the historical context, the points he makes about the epidemic being deeply shaped by knowledge systems, cultures, politics, economics and history, remain critically important for us to understand today, when we have the best tools that we have ever had and yet we still have competing theories about the best way to use these tools most effectively.

Conclusions

In conclusion, as the tools of biomedicine become more refined, we need to understand how the social world determines how and why people can really use the available interventions (“effectiveness, not just efficacy).”

We need to understand the legacies of colonial injustice and how they endure today and shape programmes. Addressing these legacies requires genuine partnership and power-sharing with specific local communities and key populations.

And finally: “We need to consider the looming crises and problems, such as climate change, the impact of authoritarian regimes and panics about LGBTIQ+ people. These problems, facing us now and into the future, make critical social research more important than ever for the ongoing response to HIV and to achieve these goals, that are so deeply-held by all of us.”

References

Unless stated otherwise, all references are to the Programme and Abstracts of the 12th IAS conference (IAS 2023), 23–26 July 2023, Brisbane, Australia.

1. Haire B. Rapporteur report back session. Track D. IAS 2023.
   https://conference.ias2023.org/media-1123-rapporteur-report-back-session
2. Macdonald V. Communities leading the way: Combining approaches to community engagement: Social network approaches to HIV testing. IAS 2023, plenary session PL03.
   https://programme.ias2023.org/Programme/Session/4369
3. França M et al. Racial inequalities in HIV testing among adolescent men who have sex with men and transgender women in three Brazilian capitals. IAS 2023, oral abstract OAD0405.
   https://programme.ias2023.org/Abstract/Abstract/?abstractid=5199
4. Munjoma M et al. Dapivirine vaginal ring (DPV-R): An acceptable and feasible HIV prevention option. Evidence from Zimbabwe. IAS 2023, oral abstract OAD04023.
   https://programme.ias2023.org/Abstract/Abstract/?abstractid=4452
5. Liberman AR et al. Multilevel barriers to methadone for HIV prevention among people who inject drugs in Kazakhstan: opportunities for change. IAS 2023, oral abstract OAD0402.
   https://programme.ias2023.org/Abstract/Abstract/?abstractid=2697
6. Cannon C et al. Doxycycline for STI prevention: Current research and future directions. IAS 2023, symposium SY22.
   https://programme.ias2023.org/Programme/Session/4357
7. Vasireddy V et al. Using client-centered models to sustain HIV service delivery to key populations in Uganda. IAS 2023, oral abstract OALBD0603.
   https://programme.ias2023.org/Abstract/Abstract/?abstractid=5724
8. Smith AKJ et al. “It was just the most horrible experience of my life” understanding social and care experiences during and after mpox illness: qualitative accounts of people diagnosed and close contacts in Australia. IAS 2023. Oral l-ate-breaker abstract OALBD0602.
   https://programme.ias2023.org/Abstract/Abstract/?abstractid=5618
9. De Schacht, C et al. Moral trauma among health professionals providing HIV services in Mozambique: preliminary results of a qualitative study. IAS 2023, oral abstract OALBD0605.
   https://programme.ias2023.org/Abstract/Abstract/?abstractid=5857
10. Race K. Social science and HIV in the fifth decade: Key challenges for the social sciences in the fifth decade of HIV. IAS 2023, symposium SY02.
    https://programme.ias2023.org/Programme/Session/4359
11. Dodds C. Social science and HIV in the fifth decade: Social science and HIV: Using methods and theory for maximum impact. IAS 2023, symposium SY02.
    https://programme.ias2023.org/Programme/Session/4359
12. Zhang Y et al. An incognito patient approach to measure enacted HIV and gay stigma in healthcare settings. IAS 2023, oral abstract OAD0202.
    https://programme.ias2023.org/Abstract/Abstract/?abstractid=5376
13. Pulerwitz J et al. Effects of a novel group-based cognitive behavioral therapy (CBT) intervention on stigma, psychosocial wellbeing and HIV service use among sexual and gender minorities in Nigeria. IAS 2023, oral abstract OAD0203.
    https://programme.ias2023.org/Abstract/Abstract/?abstractid=3365
14. Ward J. Communities leading the way: Empowering First Nations communities to combat BBVs and STIs. IAS 2023, plenary session PL03.
    https://programme.ias2023.org/Programme/Session/4369
15. Bhana D. Decolonizing HIV science: Conceiving and advancing equitable, decolonial research practices: Reframing how research is conducted. IAS 2023, symposium SY21.
    https://programme.ias2023.org/Programme/Session/4438
16. Calderon-Cifuentes P. A. The rise of sexualized drug use among key populations: The intersectional complex issue and promising community-led responses: Chemsex among trans people: A holistic approach to sexual health from the community’s perspective. IAS 2023, symposium SY13.
    https://programme.ias2023.org/Programme/Session/4427
17. Ferguson L. Bridging new gaps: Responding to the challenges of emerging sexual cultures and social contexts: The 2030 targets: Creative responses to unforeseen challenges. IAS 2023, symposium SY18.
    https://programme.ias2023.org/Programme/Session/4360
18. Dowsett G. Four decades of social science in the HIV field. IAS 2023. Symposium SY02.
    https://programme.ias2023.org/Programme/Session/4359