Saidy Brown was only 14 years old when she tested positive for HIV. She remembers the feelings of shock and confusion as if it were yesterday. 

“I was in Grade 10 and our school had been invited to a Youth Day event. I was one of the learners chosen to attend,” she recalls.

At the event, different NGOs were hosting HIV awareness sessions. 

“They told us about voluntary counselling and testing and said it was free if we wanted to test for HIV. Naively, I got tested thinking I was creating memories from my trip. Indeed, memories were created when I found out about my HIV status,” she tells Health-e News.

Brown was devastated. 

“I’m only 14. I didn’t do anything,” was all she could say at the time.

From her knowledge, HIV was transmitted through unprotected sex; which only added to her confusion. 

It was 2009 and South Africa had just reached a turning point in its HIV response after nearly a decade of the government’s refusal to provide antiretroviral therapy (ART). HIV treatment was the most accessible it had ever been and people were living longer as a result.   

But Brown wasn’t thinking that far. She couldn’t even imagine living to see her 18th birthday. Afraid of the stigma surrounding HIV – that people would think she was promiscuous – she chose to keep quiet; waiting to fall ill and, eventually, to die.

Cycle of Stigma

Nozuko Majola from the South African National AIDS Council (SANAC) says the stigma of living with HIV remains a significant challenge. It often leads caregivers to hide the child’s HIV status out of fear of others finding out.

She explains that many mothers experience deep feelings of guilt and blame themselves for the transmission.

“Self-stigma is also a major issue. Some caregivers feel sorry for the child and assume they will not be able to cope because they know how difficult it is to live with HIV in a stigmatising environment,” she says.

A 2023 study found that internalised HIV stigma affects 22% to 41% of people, anticipated stigma affects 24.4% to 43%, and experiences of any kind of HIV-related stigma range from 43.5% to 88%.

The matter is complicated by the fact that many children live with caregivers who are not their biological parents and may not be living with HIV themselves.

“As a result, they may lack the knowledge or confidence needed to provide appropriate care. Sometimes these caregivers don’t have adequate literacy or understanding to manage such a condition, and this leads to fear,” she says.

Much has changed in the HIV landscape since Brown’s HIV diagnosis. South Africa has scaled ART, and HIV treatment has improved, with most people only requiring 1 pill once a day.  People with HIV live longer and healthier lives. 

But these advancements were the furthest thing from Tay Luree’s mind when she learned of her HIV-positive status at the age of 18.  

“In 2022, I was struggling with severe stomach cramps. One time it got so bad, I had to be taken to a doctor,” Luree says.

The now 21-year-old from Koffiefontein in the Free State was referred to a local hospital where several tests were done, and it was found that her stomach pain was caused by appendicitis.

“The doctors told me they had to operate because of complications linked to not taking my treatment. I asked them what treatment they meant, and that’s when they told me that according to my hospital records, I was born HIV positive,” she recalls.

‘No Reason to Live’

Both young women tell Health-e News they struggled to come to terms with their HIV status.

Brown kept her HIV status a secret, fearing she would be blamed.

Luree says she tried to end her life shortly after being discharged from the hospital.  

“My mother left me with my grandparents when I was still very young. After I was discharged I told my grandmother about my status. She was not surprised, instead, she told me that my father died in 2005 after he stopped taking his antiretroviral (ARV) medication. She said she didn’t tell me about my status because she wanted me to have a normal childhood, free from worry, and was waiting for the right time,” Luree says.

But that explanation brought her little comfort. Her life changed drastically. She stopped going to church and began smoking weed and drinking alcohol.

“At the hospital, I was given ART medication, but I kept throwing it down the drain. It was hard to accept that I was HIV positive,” says Luree.

Brown says that after six months of keeping quiet, she finally told her teacher.

“She wasn’t surprised. She told me she knew my parents had died of HIV-related illnesses. She was calm and supportive,” Brown recalls.

At home, her aunt confirmed what the teacher had said and that she had known about Brown’s status, but wanted to protect her.

Her aunt suggested they visit the local clinic for confirmation. The results came back positive. However, Brown was not immediately started on treatment as her CD4 count — a measure of how well the immune system is functioning –  was still high. In 2009 South Africa’s ART guidelines were to start treatment when a person’s CD4 was 350 or lower. In September 2016 South Africa adopted the “test and treat” approach, offering ART to anyone testing positive for HIV regardless of CD4 count.

“I started treatment in 2013 which was four years after I first learned about my status,” Brown says.

Luree says she resumed her treatment in October last year, after a heart-to-heart conversation with her aunt.

“My aunt is a nurse. She helped me see that being HIV positive isn’t the end of the world and that I still have so much to live for. From that day, I decided to take my treatment and embrace the virus that lives in my body,” Luree says.

Implications for Broader HIV Response

Professor Khangelani Zuma, Executive Director at Human Sciences Research Council says young adults who were born with HIV but remain unaware of their status pose a significant challenge in the global effort to eliminate HIV as a public health threat by 2030. 

He says this group contributes notably to delaying the anticipated end of the epidemic.

“We know that many of them are unaware of their HIV status and do not fully understand the importance of initiating and adhering to treatment consistently and on time,” he says.

He explains that the real concern is that individuals who are HIV-positive but undiagnosed are likely to be unknowingly transmitting the virus. 

“We must intensify our efforts to identify and bring these individuals into care and treatment, as they play a critical role in perpetuating the spread of the virus,” he says.

Children lagging behind

Majola says that rates of HIV testing and treatment in children are already lagging behind other populations when it comes to the UNAIDS targets of 95-95-95 (95% of people living with HIV to know their status, 95% of those people who their status to be on treatment, and 95% of those on treatment to be virally suppressed) to end the AIDS pandemic by 2030.

“South Africa has reached the first 95 target which talks to case-finding or HIV testing for the total population. But there is still a big gap in finding and testing children for HIV,” she says. 

“There is also a significant gap in initiating ART among children. Current data shows that only 76% of children who have been diagnosed with HIV in South Africa are on ART. This means the country is falling short of the second of the UNAIDS 95-95-95 targets, which aims for 95% of those diagnosed to be on sustained treatment,” she says.

This treatment gap can be attributed to several factors, including delayed diagnosis, health system challenges, and difficulties in linking children to care, especially those who are orphaned, living in rural areas, or cared for by guardians unaware of their HIV status.

Majola says the non-disclosure leads to non-adherence to treatment, which in turn means children will not suppress their viral load as expected, and that can expose them to other opportunistic diseases as well as the onward transmission of HIV. – Health-e News