Treatment advocacy is a crucial step in the HIV care cascade. It encourages newly diagnosed persons living with HIV to understand the significance of adherence and care in attaining an undetectable status and living a healthy life. Adolescents and young people living with HIV require a diverse, youth-friendly approach that equips them with information and services on accessing and adhering to treatment.
Lupakisyo Robert Bukuku had always been passionate about making a difference in the world, and through his lived experiences, he could do that - be a part of change. As a young person living with HIV in Tanzania, he saw firsthand the challenges that adolescents and young people living with HIV face in accessing treatment and care. He knew something needed to be done to improve their outcomes and empower them to live healthy lives.
In Eastern and Southern Africa alone, there are 1.74 million adolescents living with HIV, representing 60 per cent of this population globally1. To reach the 95-95-95 targets by 2025, there is an urgent need to ramp up treatment efforts among adolescents, with recent figures from UNICEF showing that antiretroviral treatment (ART) coverage among adolescents 10-19 years in Eastern and Southern Africa was at 70 per cent2. These figures reminded him that much more was needed to be done and that, in some countries, AIDS was the leading cause of adolescent mortality.
That's when Lupakisyo decided to volunteer with the Network of Young People Living with HIV in Tanzania (NYP+). Through his work with the organisation, he became a passionate advocate for Sexual Reproductive Health and Rights (SRHR) and a champion for human rights and modern HIV treatment across Africa. He has worked with AfroCAB and Clinton Health Access Initiative (CHAI), leading a project on treatment advocacy and exploring the power of social media in promoting better treatment options like long-acting cabotegravir (CAB-LA) for prevention.
"As an HIV-SRH advocate and as someone who deeply believes in the potential of every young person, I know firsthand the vital importance of innovation and the importance of having treatment options. We all deserve a choice, a better choice,” says Lupakisyo. He recognises that adolescents and young people living with HIV require a diverse, youth-friendly approach that equips them with information and services on accessing and adhering to treatment.
Treatment interventions, including adolescent-friendly health services, peer-based group support, and community outreach, are essential. However, historically, adult voices have dominated ART advocacy. Empowering young people to understand their treatment options and confidently advocate for themselves within the healthcare system is critical. This not only improves their health outcomes but fosters a powerful youth-led movement that can ensure their specific needs are addressed in the HIV response.
"I use social media to promote adherence among young people and to dispel myths about HIV. Taking HIV medication isn't just about following a doctor's order; it's about being able to thrive and pursue big dreams. I want to make sure that every young person can access the best possible care and take the best possible care of themselves," he shares empathetically.
On the other side of the continent is Nyiko Kubai from South Africa, a young and relentless advocate for HIV treatment and service delivery. He has also worked with AfroCAB to promote treatment literacy and quality HIV treatment in South Africa through promoting community dialogues on treatment access.
"Young people still face challenges in accessing vital information and services related to SRHR and HIV, and young people are not informed about ART and its options. This is one of the challenges we have experienced," shares Nyiko as he reflects on the driving force behind his volunteer work. “I try to use any platform that I am involved in to speak about ART treatment options and, in turn, spark meaningful dialogues," he adds.
Working alongside organisations such as CHAI to improve young people's understanding of HIV treatment through informative initiatives, “we recently developed Information, Education and Communications (IEC) materials such as the Pocketbook for Caregivers and led a training for 25 young advocates around treatment literacy. They advocate themselves and then educate others about new antiretroviral therapy (ART) treatment regimens and the importance of adherence,” he shares.
In partnership with AfroCAB, Nyiko uses social and digital media like Lupakisyo to promote education on HIV treatment for children and people living with HIV, empowering them to lead treatment advocacy efforts across South Africa.
Despite the miles that separate them, Lupakisyo and Nyiko recognise the striking similarities in the challenges faced by young people living with HIV. Driven by the desire to see change in their communities, they are continuously learning, adapting and promoting new methods towards their advocacy. Their efforts are also at the heart of the UNITED! Movement - a rapidly growing force for change in strengthening HIV and SRHR advocacy in Sub-Saharan African countries. Their priorities were also captured in the Youth Declaration at the HIV Adolescence Workshop in Zambia in October 2023, highlighting critical priorities for young people across the region.
Leveraging their social media platforms and networks, they've become champions for raising awareness and amplifying key messages around ART, PrEP, and equal access to quality HIV and SRHR services. “Young people still have challenges accessing information and quality SRHR/HIV services, and they are unconfident about talking about it,” says Lupakisyo. “We have unclear laws on the integration of SRHR. These are some of the reasons I am involved in this work because it directly impacts me and the lives of my peers.”
By educating themselves about treatment options and health-related issues, young leaders like Lupakisyo and Nyiko can empower their communities to advocate for better access to ART. This not only improves individual health outcomes but also strengthens the collective voice of young people living with HIV. This, in turn, drives positive change and ensures their specific needs are prioritised for an effective HIV response.
https://www.unicef.org/esa/media/8791/file/Adolescents-HIV-Eastern-Southern-Africa-2021.pdf
https://data.unicef.org/topic/hivaids/adolescent-hiv-treatment/