Elona Toska (Researcher, UCT); Zahra Abba Omar (BSocSci Student, UCT)
Editorial Note: Dr Elona Toska is an adolescent health researcher at the Centre for Social Science Research and an Associate Lecturer at the Department of Sociology, University of Cape Town and Zahra Abba Omar is a research assistant with the newly-funded UKRI GCRF Accelerate Hub (Accelerating Achievement for Africa’s Adolescents), co-located at UCT and Oxford University. Research has shown that individuals with an undetectable viral load cannot transmit the virus to others: U=U (Undetectable = Untransmittable). This piece centres around adolescents and young people living with HIV and discusses barriers and facilitators to achieving and maintaining an undetectable viral load through ART which is central to making U=U achievable for adolescents and young people.
People living with HIV can achieve and sustain undetectable viral load through antiretroviral therapies. Those with undetectable viral load cannot transmit the virus to their partners, also known as U=U. In the wake of the ECHO trial and emerging data on Dolutegravir, an antiretroviral drug being rolled out, we need to think carefully about how we can make U=U work for adolescents and young people living with HIV in South Africa.
Rigorous clinical evidence has firmly established that individuals living with HIV who achieve and maintain an undetectable viral load by taking and adhering to a prescription of antiretroviral therapy (ART) cannot sexually transmit the virus to others (1). This is known as Undetectable = Untransmittable (U=U). The World Health Organization (WHO) and more than 750 other organisations have endorsed this approach, leading to calls for healthcare providers to talk to their patients about U=U (2). However, U=U is not easily applicable to all people living with HIV in all contexts (3). Central to making U=U a reality for adolescents and young people (10-24 year olds) living with HIV is our approach to engaging with adolescents and young people around options, choice and opportunities, focusing on their own well-being, not just as vectors of disease (4).
At a recent event bringing together over two hundred healthcare workers from more than a dozen sub-Saharan African countries hosted by Paediatric Adolescent Treatment for Africa, a young peer supporter asked a panelist: “How long does it take for viral load to bounce back? How do you know you are still U=U?” This question is at the core of attaining U=U in resource-limited settings, and for adolescents and young people whose lives are in flux, both emotionally and practically.
Adolescents and young people have been found to have inconsistent engagement in care and intermittent viral suppression, and these practices are shaped by a complex set of individual, relational, healthcare, and structural factors (4). Analyses from a survey of adolescents living with HIV found that exposure to different types of violence was strongly linked with reduced rates of self-reported adherence in the previous week. Specifically, being beaten at school hard enough to leave marks, physical abuse at home, witnessing domestic violence and being shouted at by a healthcare provider for missing pills or having sex were strongly linked to non-adherence, both individually, and in combination (5). The likelihood of reporting non-adherence rose from 25% without any violence to 75% among adolescents who experienced all four types (6).
However, several factors support adherence to ART among adolescents living with HIV. Access to support groups, parental monitoring, and having enough food to eat were associated with improvements in adherence. At the facility level, five factors combined (STACKed) to improve retention in HIV care: a clinic that had no Stockouts, adolescents feeling that their providers had enough Time to see them, having someone to Accompany them to the facility, enough Cash to access it, and staff that treated them Kindly (7). Retention in care improved from 3% to 69% among adolescents who accessed all five STACKed factors.
Adolescents’ understanding and acceptance of their HIV status and engagement in their treatment is also critical to attaining U=U (8). Knowledge of one’s own HIV-positive status has been linked to better adherence and safer sexual practices among adolescents, especially when disclosure occurred following WHO guidelines, which includes involvement of adolescents, their caregivers, and healthcare providers (9). Upon learning their HIV status, most adolescents living with HIV are faced with multiple imperatives from caregivers and providers: don't disclose your HIV status, don't have sex, and don't miss your medicines.
Our denialism of sexual exploration and reproductive desires of adolescents and young people living with HIV is a critical barrier to U=U for this group. Although adolescents living with HIV since birth may be slower to mature sexually, their sexual activity catches up to their peers when on ART. Ultimately, like all other young people in the second decade of their lives, adolescents living with HIV want to be the same as their peers. They dream of and experiment with sexual and romantic relationships, hallmarks of the classic teenage urge for normalcy and social acceptance.
Timely access to viral load data is critical to monitoring U=U. Unfortunately, knowing and benefitting from U=U is easier said than done. Our team was only able to find 88% of patient files for the adolescents and young people involved in our study, and only 51% of the records had any viral load results recorded in the past year (10). While there are many reasons for limited access to timely viral load data, its absence makes U=U difficult to apply for adolescents and young people in South Africa. Findings from several studies suggests that a substantial proportion of adolescents living with HIV are engaging in high-risk sex while their viral loads are detectable. Addressing U=U while taking into account the context where adolescents living with HIV, while acknowledging the power of adolescence as a time of social re-orientation, physical, biological and neurocognitive development and identity formation, is important.
The HIV and sexual and reproductive health communities have been shaken up by the findings of the ECHO trial. While it did not find that there were differences in HIV risk of infection across three different types of contraception, the rates of HIV infections were unacceptably high among women across three methods, particularly in South Africa (11). As the study findings were shared, calls for integrating HIV and sexual and reproductive health services intensified (12). Central to rights-based women-centred contraception and family planning access is contraceptive choice, which we measure as offering women a mix of contraceptive methods (13). However, this choice is rarely available to adolescent girls and young women, limited by stockouts, provider knowledge, skills and beliefs about adolescents and their sexual and reproductive health (14). When Olwethu (a pseudonym), a 21-year old mother asked to have a tubal ligation procedure after giving birth to her third child, she was told by her medical provider that she was too young to be given the procedure (15). This was despite the fact that she had her first child at 14, her second at 17 – both following failed attempts at using other methods of contraception, first the pill, and later the injection. While the provider’s recommendation may have followed the existing policies and protocol, the message heard by this young mother was: even when they know what contraception method they want, they are told that they cannot have it.
Evidence on dolutegravir – a promising drug with better treatment outcomes but also potential teratogenic effects (16) and weight gain risks (17), has highlighted the issue of choice – and options – in the HIV treatment agenda. Activists are calling for the drug to be made available to women who can make their own decision, once made aware of the risks and benefits of the drug. What can we – as researchers, providers, and practitioners – learn about offering choice and options to adolescents and young women, based on the last six decades of contraception and family planning work? How can we translate this into the provision of HIV care and sexual and reproductive health services for adolescents and young people living with HIV in South Africa?
Most of our programming, and our approaches to working with adolescents, treat them – in the words of a colleague – as adults in body with the minds of children. However, a growing body of evidence from neuroscience, critical public health, and other disciplines has documented several features of adolescence as a critical period of growth and development (18). It is a time of strong peer influence (positive and negative), social re-orientation, sensitivity to social exclusion, risky decision-making, and heightened emotionality. This risk-taking, however, is not always negative or focused on sensation-seeking and on “I can get away with it” view of the world, which is a common reputation of adolescents. Before adolescence, the brain’s frontal lobe remains small. Through risk-taking, the adolescent pre-frontal cortex develops which translates into self-regulation, established in most young people by the age of 20-23. At a workshop on Understanding Adolescence in African Contexts held by the Accelerating Achievement for Africa’s Adolescent Hub, Dr Emma Kilford from the University College London (UCL) Institute of Cognitive Neuroscience highlighted that risk-taking in adolescence can be constructive. For example, we think of risk-taking as not getting tested for HIV and not knowing one’s status. But in the adolescent’s understanding of the world, choosing to negotiate safe sex with a partner – or saying no to sex without a condom – is from a social perspective, a highly risky behaviour (19).
Bringing together models of ART care and sexual and reproductive health for adolescents living with HIV may be the missing link to making U=U work. Many promising models are being rolled out in South Africa and neighbouring countries (20). Our approaches in offering healthcare services need to move beyond warnings and talking to adolescents. Designing, testing and rolling out programmes together with adolescents may be key to making this happen. Watch this space!
1. Prevention Access. (2016). Consensus Statement: Risk of sexual transmission of HIV from a person living with HIV who has an undetectable viral load.
2. Calabrese, S. K., Mayer K. H., (2019). Providers should discuss U=U with all patients living with HIV. The Lancet HIV, 6(4), 211-213. https://doi.org/10.1016/S2352-3018(19)30030-X
3. Haghighat, R., Toska, E., Bungane, N., Cluver, L. (2018). 90-90-48: The Reality of Viral Suppression among ART-initiated Adolescents in South Africa. In: Oral Abstracts of the 22nd International AIDS Conference, 23-27 July 2018, Amsterdam, the Netherlands. Amsterdam, the Netherlands. https://doi.org/10.1002/jia2.25148.
4. Toska, E., Cluver, L.D. (2018). Barriers to U=U for adolescents living with HIV: predictors of high HIV-transmission risk from a longitudinal cohort study. In: 2nd International Workshop on HIV Adolescence - Challenges & Solutions. Cape Town, South Africa: Reviews in Antiviral Therapy & Infectious Diseases; 2018:31.
5. Cluver, L., Meinck, F., Toska, E., Orkin, F. M., Hodes, R., Sherr, L. (2018). Multitype violence exposures and adolescent antiretroviral non-adherence in South Africa. AIDS, 32(8), 975-983. https://doi.org/10.1097/qad.0000000000001795
6. Kidman, R., Nachman, S., Dietrich, J., Liberty, A., & Violari, A. (2018). Childhood adversity increases the risk of onward transmission from perinatal HIV-infected adolescents and youth in South Africa. Child abuse & neglect, 79, 98-106.
7. Cluver, L., Pantelic, M., Toska, E., Orkin, M., Casale, M., Bungane, N., Sherr, L. (2018). STACKing the odds for adolescent survival: Health service factors associated with full retention in care and adherence amongst adolescents living with HIV in South Africa. Journal of International AIDS Society, 21(9). https://doi.org/10.1002/jia2.25176
8. Hodes, R., Vale, B., Toska, E. (2019) The misclosure of an adolescent’s HIV-status. In Connected Lives: Families, Households, Health and Care in Contemporary South Africa. Ed. by Mkhwanazi, N., and Manderson, L. Cape Town, South Africa: HSRC Press.
9. Toska, E., Cluver, L. Hodes, R., Kidia, K., Thabeng, M. (2015). Sex and secrecy: how HIV-status disclosure affects safe sex among HIV-positive adolescents. AIDS Care, 27 (sup1), 47-58. http://doi.org/10.1080/09540121.2015.1071775
10. Cluver, L. D., Toska, E., Orkin, M., Meinck, F., Hodes, R., Yakubovich, A., and Sherr, L. (2016). Achieving equity in HIV-treatment outcomes: can social protection improve adolescent ART-adherence in South Africa? AIDS care, 28(sup2), 73-82. http://doi.org/10.1080/09540121.2016.1179008
11. Evidence for Contraceptive Options and HIV Outcomes (ECHO) Trial Consortium. (2019). HIV incidence among women using intramuscular depot medroxyprogesterone acetate, a copper intrauterine device, or a levonorgestrel implant for contraception: a randomised, multicentre, open-label trial. The Lancet, 394 (10195). https://doi.org/10.1016/S0140-6736(19)31288-7
12. Noguchi, L. M., Simelela, P. N. (2019). How should we listen to ECHO? The Lancet, 394 (10195). https://doi.org/10.1016/S0140-6736(19)31387-X
13. Mackworth‐Young, C. R. S., Bond, V., Wringe, A., et al. (2017). “My mother told me that I should not”: a qualitative study exploring the restrictions placed on adolescent girls living with HIV in Zambia. J Int AIDS Soc, 20(4). https://doi.org/10.1002/jia2.25035
14. Blackstone, S. R., Nwaozuru, U., Iwelunmor, J. (2017). Factors influencing contraceptive use in sub-Saharan Africa: a systematic review. International quarterly of community health education, 37(2), 79-91. https://doi.org/10.1177/0272684X16685254
15. Cooper, D., Harries, J., Moodley, J., Constant, D., Hodes, R., Mathews, C., & Hoffman, M. (2016). Coming of age? Women’s sexual and reproductive health after twenty-one years of democracy in South Africa. Reproductive Health Matters, 24(48), 79–89. DOI: 10.1016/j.rhm.2016.11.010
16. Hill, A., Venter, W.F., Delaporte, E., Sokhela, S., Kouanfack, C., Moorhouse, M., McCann, K., Simmons, B., Calmy, A. (2019). Progressive rises in weight and clinical obesity for TAF/FTC/DTG and TDF/FTC/DTG versus TDF/FTC/EFV:ADVANCE and NAMSAL trials. 10th IAS Conference on HIV Science Abstract Supplement Journal of the International AIDS Society, 22(S5): e25327 (Abstract number: MOAX0102LB)
17. Alcorn, K. (2019). Dolutegravir leads to weight gain in two African studies, [Online], Available: http://www.aidsmap.com/news/jul-2019/dolutegravir-leads-weight-gain-two-african-studies [Accessed: 1 Nov 2019]
18. Sawyer, S. M. Azzopardi, P. S., Wickremarathne, D., Patton, G. C. (2018). The age of adolescence. The Lancet Child & Adolescent Health, 2(3), 223-228. https://doi.org/10.1016/S2352-4642(18)30022-1
19. Toska, E., Pantelic, M., Meinck, F., Keck, K., Haghighat, R., Cluver, L. (2017). Sex in the shadow of HIV: A systematic review of prevalence rates, risk factors and interventions to reduce sexual risk-taking among HIV-positive adolescents and youth in Sub-Saharan Africa. PLoS One. 12(6): e0178106. https://doi.org/doi: 10.1371/journal.pone.0178106
20. Ridgeway, K., Dulli LS, Murray KR, et al. (2018). Interventions to improve antiretroviral therapy adherence among adolescents in low- and middle-income countries: A systematic review of the literature. Ed. by Paraskevis, D. PLoS One, 13(1). https://doi.org/10.1371/journal.pone.0189770.
Dr Elona Toska is an adolescent health researcher at the Centre for Social Science Research and an Associate Lecturer at the Department of Sociology, University of Cape Town. Her research interests centre on adolescent sexual and reproductive health in the context of HIV in resource-limited settings, and how we can support them to engage in safe relationships with peers and adult figures in their lives. She works closely with colleagues at UNICEF, UNFPA, WFP, the Elizabeth Glaser Paediatric Foundation, and Paediatric Adolescent Treatment for Africa to inform programming for adolescents and young people in Sub-Saharan Africa.
Zahra Abba Omar is an undergraduate student at the University of Cape Town, in her final year of her BSocSci majoring in Politics, Sociology, and French Language and Literature. She serves as a research assistant with the newly-funded UKRI GCRF Accelerate Hub (Accelerating Achievement for Africa’s Adolescents), co-located at UCT and Oxford University, that seeks to map paths for accelerators in the implementation of the UN's 2030 development agenda, particularly in achieving SDG targets for HIV+ adolescents. Her work has been published in The Sunday Times, City Press, and ART AFRICA Magazine.
Division of Social and Behavioural Sciences
School of Public Health and Family Medicine
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University of Cape Town