Stigmas Impact on ART Medication Adherence among Young Transgender Women & HIV-Positive MSM

By: Ranier Simons, ADAP Blog Guest Contributor

One of the most essential tenets of antiretroviral therapy (ART) is adherence. Consistent administration of HIV medication is the route to well-controlled HIV disease and ultimately undetectable status. Lack of adherence prevents viral suppression, resulting in advanced disease states, can result in medication resistance, and contributes to transmission. A myriad of challenges causes key populations of people living with HIV/AIDS (PLWHA) to experience ineffective adherence. A recent report on a study conducted in several countries of Africa reveals a lack of adherence among key populations of young people due to intersectional stigma. 

Photo Source: UNESCO

The Health Economics and AIDS Research Division (HEARD) of the University of KwaZulu, Kamuzu University of Health Sciences in Malawi, the University of Zambia, and the University of Zimbabwe collaborated for a three-year research project to examine how various stigmas influence anti-retroviral therapy (ART) medication adherence in young transgender women and HIV-positive men who sex with men (MSM).[1] The study of 156 participants consisted of interviews and surveys. The purpose is to explore the experiences of intersectional stigma, develop a conceptual change model, design an intervention to improve ART adherence based on the model, and document results to create guidelines for improvement of the status quo in the South African Development Community Region.[1] Overall, fear of the study population’s HIV status being revealed and depression from dealing with the social stigma attached to their sexual and gender minority status results in poor medication adherence. 

Fear of discovery amidst the study population was nuanced. Some participants skipped doses of their medication because their living arrangements did not allow them privacy to take care of their health. They feared their medication being discovered in their belongings or being seen taking medication. Some of the participants lived in communities with social stigma of PLWHA. These young people feared their family or friends discovering their HIV status. Others feared discovery by their relationship partners. They feared their partners would desert them upon discovery of their status. In this case, skipping medication means poor health outcomes for themselves and possible transmission to their partners. Some participants even reported HIV stigma within the LGBTQ community, which they felt would make it harder for them to find partners.[1]

Others dealt with a different fear. Some of the participants lived in communities where there was increasing normalization of more acceptance of PLWHA. However, in these communities, there is still a negative stigma towards homosexuality, and in some cases, it is criminal. For the youth who were already known to be homosexual, they feared discovery of their HIV status because these communities saw it as a punishment for their sexuality. Thus, they skipped medication often or did not seek out regular treatment in medical facilities for fear of being treated poorly for being HIV positive and homosexual. 

For both the transgender women participants and the MSM, social stigma due to their sexual and gender identity caused mental health issues that contributed to a lack of treatment adherence.[1] They reported being looked upon with disdain and sometimes verbal or physical violence; navigating society as proverbial ‘black sheep’ caused depression and even suicidal ideation that made it challenging to be consistent with the self-care of ART adherence.[1,2] This was especially true for those who reported alcohol and substance abuse as a way of coping. It’s a well-documented fact that substance abuse results in poor medication adherence. 

Photo Source: The Lancet

The research project is ongoing and in the stages of synthesizing intervention concepts. The discussion of the data has spawned several priorities. One priority is finding safe avenues of adequate care regarding HIV treatment. There need to be safe spaces to receive care and medication. Additionally, mental health resources for these young people are required. It is imperative to create safe spaces to talk about what is going on in their lives and how to cope. They need mental health professionals as well as safe peer group spaces to interact and support each other. Researchers also emphasized the importance of including the experiences and perceptions of front-line healthcare providers. The study cannot change external factors such as cultural prejudices and unfair criminalization. However, creating safe healthcare pipelines and infrastructure for psycho-social support will hopefully improve ART adherence and quality of life for the young sexual and gender minorities of Zimbabwe, Zambia, and Malawi.

[1] SADC. (2023, April). Regional Symposium Report. Retrieved from https://www.heard.org.za/wp-content/uploads/2023/06/SADC-Symposium-Report_final.pdf

[2] Govender, K., Nyamaruze, P. (2023, September 25). Young people with sexual or gender diversity are at higher risk of stopping their HIV treatment, research finds. Retrieved from https://medicalxpress.com/news/2023-09-young-people-sexual-gender-diversity.html

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.