Growing up in this day and age can be difficult for anyone. Entering adolescence in particular can be extremely complicated, as boys and girls wrestle with new responsibilities, their futures and their sexuality. In many parts of sub-Saharan Africa, the risk of HIV infection adds another layer of complexity. For girls like Joyce*, who was born HIV positive, adolescence and early adulthood can prove especially challenging.
I met Joyce in a small courtyard tucked deep within a web of unpaved roads in a slum area of a sub-Saharan capital. Shy and unassuming, she looked much younger than her 17 years. She told me that she had dreams of becoming a lawyer someday, but it soon became clear that attaining that goal would almost certainly remain out of reach.
Her story is heartbreaking. And because she fears being stigmatized, she hasn’t shared the depth of her plight with her neighborhood peers. Shortly after Joyce was born, her mother succumbed to AIDS. As she got older, her father grew increasingly ill and was largely unable to work. As a result, Joyce dropped out of school because she couldn’t afford the associated fees, and at the time we met, she had stopped taking her anti-retroviral (ARVs) medication in part due to the prohibitive cost of transport required to retrieve them from the hospital. I later learned that her father passed away a few hours after our meeting.
There are legions of girls like Joyce in sub-Saharan Africa who were born HIV positive and who are now coming of age while living with the virus, and facing enormous health challenges, as well as stigma and discrimination. And adolescent girls in many countries around the world are also at high risk for acquiring HIV because of social and institutional factors, including child marriage and gender-based violence.
Zambia is one such country. UNICEF estimated there were at least 80,000 adolescents living with HIV in Zambia in 2009. In order to better understand the challenges adolescent girls living with HIV face as they transition into adulthood, ICRW, in partnership with public health research organization, Zambart, is conducting a first-of-its kind qualitative study in the country with support from the MAC AIDS Fund.
The encouraging growth of home-based and provider-initiated HIV testing and counselling in Zambia will likely increase the number of adolescent girls who learn they are living with HIV in upcoming years. As a result, there will likely be an increased demand for treatment, care and support services in Zambia. Despite this burgeoning demographic of young Zambians living with HIV, psychosocial support and health care services for adolescent girls is limited. This deficit is worsened by the prevalence of HIV-related stigma and discrimination, as well as gender-based prejudice that affects the daily lives of girls living with HIV.
In an effort to address this gap in services, the ICRW-Zambart study is examining the unique stigma- and gender-related obstacles girls endure while facing some of the challenges of living with HIV such as adhering to medication regimens and clinical appointments, navigating safe sexual relationships, and handling the psychosocial challenges of learning of and disclosing their status. Through participatory workshops and interviews, ICRW will identify key challenges and stigma-related concerns surrounding HIV and pinpoint areas for intervention development to support healthy transitions to adulthood for these girls.
With this information, ICRW hopes to inform national programming and policies for adolescent girls living with HIV in Zambia. Beyond that, ICRW hopes this study will garner increased attention and action to address the needs and concerns of adolescents like Joyce living with HIV around the world, with a particular focus on addressing HIV-related stigma and discrimination.
As for Joyce, today she is doing much better, although she still faces many struggles. She recently celebrated her 18th birthday, she’s back on her ARVs and her health is improving every day, and she has joined a drama-troupe with other HIV-positive youth. Although finances are tight, she also has aspirations to enrol in a hotel management training course that will give her the tools needed to support herself, stay healthy and if not reach her ultimate dream of becoming a lawyer, to blossom into adulthood.
*Joyce is not her real name. To help support her education and daily needs, please write to Erin Kelly at email@example.com.