Despite stigma reduction campaigns in Rwanda, the stigma of HIV is still highly prevalent and affects the patients at WE-ACTx For Hope clinic in Kigali. Stigma can reduce HIV medication adherence if patients are unable to hide their ARV’s, can’t find private locations or times to take their medications or have no one to provide support for their adherence. One particularly vulnerable population is youth in public boarding schools. Due to the close quarters, the tightly monitored environment and strict school schedule, it can be difficult for students to remain adherent while away at boarding school. Additionally, in Rwandan culture, if classmates saw someone taking medication, they would be more likely to openly inquire about it or request to use some themselves. Shirking answers or denying to share medication can be construed as disrespectful and interfere with personal relationships between fellow students in boarding school.
The primary indicator of adherence rate is viral load and at WE-ACTx only 70% of patients aged 13-24 are virally suppressed compared to 84% viral suppression within the entire clinic population. In order to investigate this trend and discover methods in which current youth are battling stigma, we organized focus groups of students who were either on break from boarding school or had previously been in boarding school.
There was another account that reinforced our idea to investigate this specific area within HIV treatment when the WE-ACTx research team came in contact with a student who experienced stigma while in boarding school. One patient’s story, relayed by her mother, started when she was accused by her classmates of stealing money. The girl’s teacher demanded to search her belongings and began rummaging through her things in front of her classmates. While she was searching, the teacher accidentally pulled out the girl’s HIV medication and the tablets spilled all over the ground, scattering everywhere. Her classmates knew the purpose of the medication and the girl was mortified. After a few days, because of her embarrassment and the stigma that she felt, she decided that she wanted to commit suicide. In the meantime, one of the girl’s classmates who was also HIV positive and taking ARV’s, began monitoring her for any indications of self-harm. When her classmate saw her trying to commit suicide, she stopped her and showed her own ARVs, telling her that it was okay and that her life was valuable. The girl changed her mind and is currently alive and in contact with WE-ACTx.
Therefore, the realities of stigma are all too real and can take situations that are challenging yet manageable and make them seem hopeless. This is why we wanted to investigate how we could further support the youth as they faced these issues and what mechanisms they already had in place to remain adherent and confident in the face of stigma at boarding school.