“Stop treating HIV like a wound – the bandage doesn’t work” (Masedi, 23, Botswana): Listening to young people and changing narratives around HIV/AIDS

By Jamie Enoch (Research Assistant in AIDS Policy, London School of Hygiene & Tropical Medicine)

World AIDS Day 2017

This World AIDS Day 2017, there is significant progress to celebrate as UNAIDS figures suggest that almost 21 million people living with HIV are now accessing life-saving antiretroviral treatment. However with little change in new HIV infections, and even increases in new infections in certain regions of the world such as Eastern Europe and Central Asia, or among specific populations, there is much more to do. This year, in their Right to Health report, UNAIDS are highlighting the importance of advancing human rights in the HIV/AIDS response, as a key prerequisite for good-quality, low-cost HIV services and treatment, and the right to freedom from discrimination and marginalisation.

Young people and HIV/AIDS

Nowhere is the human rights approach to tackling the HIV/AIDS epidemic more central than among adolescents. In sub-Saharan Africa, three quarters of new infections in 15-19 year olds are among girls, with gender inequality underpinning vulnerability to HIV infection. Many adolescents are unaware of their status and are not being linked to care because their parents’ or caregivers’ consent is required for access to HIV and other sexual and reproductive health services. This ethical/legal challenge, frequently in a context of poverty, stigma experienced by young people, can limit their agency, autonomy and ability to access the health services they need.

Support for adolescents living with HIV was the theme of a roundtable in Jul 2017 organised by LSHTM and Sentebale, attended by Sentebale’s co-founder Prince Harry. At this event, LSHTM and Sentebale agreed to compile a paper on promising approaches in the academic literature for supporting adolescents living with HIV. The policy brief, Addressing challenges facing adolescents in knowing and managing their HIV status in sub-Saharan Africa, aims to provide a starting point for NGOs and policymakers supporting young people with HIV who wish to learn from good practices documented in scientific and grey literature since 2010. Through quotations from youth advocates who work directly with Sentebale, it aims to demonstrate the vital importance of listening to young people and putting them front and centre of programme and service design. The brief covers a range of approaches to improving services and environments for young people, the messaging and language around HIV used towards adolescents, and supporting adolescents’ agency to live positively with HIV. It covers two articles from Health Policy and Planning, including on the PopART trial’s sub-study investigating how universal test-and-treat approaches affect stigma, and the Amagugu intervention to support mothers’ disclosure of their HIV status to their children.

From listening to young people affected by HIV and reviewing the literature, it is clear that the unique needs of adolescents must be factored in to development of health services which are accessible, welcoming and friendly environments for youth. We need to recognise the role of caregivers in mediating young people’s opportunities to test and link to treatment for HIV, particularly in countries where parental consent is required for under-18s to access sexual and reproductive health services. In particular, young people’s lived experience and concerns need to be the starting point for interventions if these are to be meaningful and sustainable. This may entail challenging, honest conversations around young people’s autonomy, how they interact with their families and peers, and attitudes around sex, dating and relationships. We need to listen to the voices of all young people, including adolescents with disabilities and those from marginalised groups who may be at particularly high risk of HIV infection and AIDS-related illnesses.


The complex structural causes of poor treatment outcomes among adolescents at the population level – poverty, gender inequalities, and stigma and discrimination – are still to be fully addressed in many countries, and will require long-term systemic change in the policy and legal spheres. However our paper suggests that one immediate action the global health community can take is to step up and intensify our engagement with young people affected by HIV, and empower them to speak up and lead. In 2017, young people with HIV have the right to a healthy, happy, productive life that they feel in control of, like all their HIV-negative peers. In the words of Kananelo, a youth advocate from Lesotho,

“I want to give a sense of hope that there is still life if you are HIV-positive… I have a vision of keeping the next generation alive”.

This message needs to be loudly broadcast and fully integrated into services and interventions, so that young people’s energy and optimism can be harnessed as a driving force for more effective approaches to supporting the millions of young people still affected by HIV.

Related links:

  1. HIV/AIDS Research Collection
  2. EDITOR’S CHOICE ARTICLE: The Amagugu intervention: a qualitative investigation into maternal experiences and perspectives of a maternal HIV disclosure support intervention in rural South Africa
  3. HIV-related stigma and universal testing and treatment for HIV prevention and care: design of an implementation science evaluation nested in the HPTN 071 (PopART) cluster-randomized trial in Zambia and South Africa