Margareth Mwakilasa, an assistant research fellow at Muhimbili University of Health and Allied Sciences in Tanzania and a PhD student in Global Health at University College Dublin, presented her research findings at the 5th HIV Research for Prevention Conference (#HIVR4P2024) in Lima, Peru. Her study, titled "They are Not HIV Treatment Drugs; They are Preventive Drugs (PrEP): Experiences of Using PrEP Among Vulnerable Adolescent Girls and Young Women in Tanzania," was part of the Oral Abstract session "Support Matters: You Are Not Alone!"
Mwakilasa's research focused on the practical and social dynamics of PrEP uptake among adolescent girls and young women at high risk of HIV in Tanzania. Data collected over two years via interviews with 52 participants allowed for a deep dive into the barriers and facilitators impacting PrEP use in institutional settings. In an interview with AllAfrica's Sethi Ncube, she discussed her research paper, which has been accepted for publication in PLOS ONE, a peer-reviewed journal by the Public Library of Science, with expected publication in November or December 2024.
In Tanzania, despite remarkable advances in HIV prevention, adolescent girls and young women at high risk still face significant barriers to accessing pre-exposure prophylaxis (PrEP). PrEP is a proven intervention that, when taken consistently, can prevent HIV infection. However, as PrEP is currently reserved for key populations, its availability is only restricted to young women identified as high-risk, including those with repeated STI history, HIV-positive partners, or those engaged in transactional sex. This narrow access leaves many young women in the dark about this prevention tool.
Research and conversations with adolescent PrEP users in Tanzania revealed that although PrEP awareness is growing among those in the program, misinformation and logistical barriers are impeding widespread access.
"For these vulnerable adolescent girls and young women, the ones that I've had an opportunity to sit down and talk to, there are some who really know what PrEP is and how HIV can be prevented. They have that knowledge. But if you go to a general population right now, if you go to school and ask adolescents or go to a secondary school, I bet you a very small number will have an awareness of what PrEP is and how it works. Also, misconceptions about PrEP are not only within users...what is been discussed within the community is that PrEP is not an HIV prevention drug. Maybe it causes cancer or infertility...," says Mwakilasa. This gap in awareness is often due to limited outreach, as young people typically learn about PrEP from friends rather than healthcare providers.
To bridge this knowledge gap, Mwakilasa's study used creative recruitment methods, placing informational flyers and brochures at health facilities where eligible adolescent girls and young women return for PrEP refills. Partnering with peer navigators - trusted figures in the community trained to share accurate health information — has been a key strategy. For many adolescents, speaking with a peer about PrEP was more reassuring than speaking with a healthcare worker.
Empowering Youth in Healthcare
According to the study, long wait times and a shortage of healthcare providers affect many countries, but expanding peer-led support networks could help. By training more young peer educators, we can reduce the burden on healthcare providers and enhance the adolescent patient experience. These peer educators can handle routine support tasks during refill appointments, allowing nurses to focus on prescriptions and testing. Additionally, hiring more young healthcare professionals can create a more comfortable environment for adolescents, encouraging open discussions about sensitive topics like reproductive health and contraception. Expanding both peer and young provider roles can make healthcare spaces more welcoming and reduce stigma, empowering adolescents to seek the care they need.
Operational and Structural Barriers Impacting Consistency
According to Mwakilasa, once young women start on PrEP, keeping up with refills and appointments brings further challenges. Tanzanian clinics operate from 9 to 5, hours that overlap with young people's own working hours or business activities essential for their livelihoods. Many adolescents miss their scheduled refill dates or forego PrEP entirely, as the transportation costs are too high for those living far from clinics. While some regions have started using mobile clinics to bring services closer to communities, this solution is limited to certain areas, and many adolescents are left unsupported.
"The PrEP delivery model varies from region to region, we have some donors who have peer navigators or healthcare providers, or have mobile cars to go on a community service delivery. These are only available in certain areas. I think there are some measures that need to be put into place to consider these issues that adolescents are raising, that they are a challenge for them to be able to access service."
Privacy issues in health facilities further deter young women from seeking PrEP. With clinics often located in visible areas, adolescent girls and young women fear being spotted by neighbours and being judged or labeled as HIV-positive. Moreover, PrEP services are often housed within HIV treatment centers, spaces that carry a stigma adolescents and young women have grown up wary of. "Seeing someone I know in the clinic can be uncomfortable," one participant said.
She said separating PrEP services from HIV treatment areas could create a youth-friendly environment that fosters confidence and comfort in accessing PrEP.
Navigating Misinformation and Enhancing Peer-Led Outreach
The young women Mwakilasa interviewed highlighted the need for education campaigns led by youth voices. Studies show adolescents are more likely to trust PrEP information delivered by their peers than by unfamiliar and older healthcare workers. Training peer educators with comprehensive PrEP knowledge and equipping them with informational materials could significantly boost outreach. Community-based PrEP programs could also offer practical solutions. Adolescents envision mobile units stationed in familiar spots, like community centers, where they can discreetly pick up refills without being in the public eye.
Community-based campaigns led by peer educators could clear up harmful misconceptions, and build awareness that PrEP is a safe, preventive tool, not treatment. PrEP delivery through community centers and partnerships with local leaders could also create safe spaces where young women feel comfortable seeking care.
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Mwakilasa's work highlights an urgent call for Tanzania's healthcare system to enhance PrEP access for young women, stressing the importance of support networks and youth-centered spaces for HIV prevention.
Creating Stigma-Free Spaces for Adolescent Healthcare
True inclusivity in healthcare means designing spaces that respect the unique needs of every group served. In Tanzania, Care and Treatment Centers (CTCs) were originally built to provide HIV treatment. Still, as more services like PrEP prevention are integrated, the stigma around these centers can create barriers—especially for young people who don't feel comfortable seeking preventive care in settings associated with HIV.
"I think from one of the recommendations of the study, adolescents said that they want even a separate room. Even if it's hard to have a new building structure within the CDC, maybe they could just open another door, just facing the other direction, or a different room within the CTC or just one room within the healthcare facility that is for only PrEP preventive services," said Mwakilasa.
allAfrica's Sethi Ncube attended the 5th HIV Research for Prevention Conference, HIVR4P 2024, in Lima, Peru, reporting from the only global scientific conference focused on the challenging and fast-growing field of HIV prevention research.
