#AIDS2016: In the shadow of HIV
Thousands of children born HIV positive before effective treatment for their pregnant moms are now teenagers and young adults, struggling to negotiate life’s challenges, write Lungile Thamela and Mpho Lekgetho
One of South Africa’s greatest successes in the fight against Aids has been the prevention of mother-to-child HIV transmission (PMTCT), which has cut the HIV transmission rate from mothers to their babies from about 30% to 1.8%.
But thousands of babies were unlucky enough to be born with HIV before effective PMTCT, and are struggling to come to terms with what it means to be HIV positive – including taking daily medication and dealing with having a sexually-transmitted virus although they have not yet been sexually active.
Tshego*, 17, from Upington in the Northern Cape has been on ARVs since she was a baby. When she was little, her granny used to collect her medication but now she has to do so herself and finds it daunting: “When I am going for collection, I only find adults at the clinic and it makes me feel like I am not at the right place. I always go after school, but having to explain to my friends about why I need to go to the clinic makes me less of who I am.”
Tshego has decided not to date until she is an adult because disclosing her HIV status is too hard.
“Before you are ready to disclose to your partner, friends will do that for you and you become an untrusted person, which leads to a relationship break-up. So I have decided not to have any relationship any more because even friendship does not last once you reveal your HIV status. I will only talk openly about my status when I am an adult because I am scared of being rejected.”
Tshego takes her medicine at 6.30am before she goes to school but must wake up very early and prepare food because she cannot take ARVs on an empty stomach.
“I sometimes wish there were facilities that can accommodate us young people,” she said. “The only platform that we get is from Children Adherence Club at my clinic, Gateway Clinic. We meet every second week on a Saturday but we are few because some parents are not open enough to send their kids to the club.”
Lebogang Nkadimang, of the John Taolo Gaetswe District Aids council, said there was a need for paediatric counselling training for counsellors: “We lack resources such as youth clinics, where our teenagers can be comfortable to visit and use the resources available. Stigma needs to be addressed because it also causes defaulters.”
Meanwhile, the Department of Social Development’s Nthabiseng Andreas says her department supports the adherence clubs to help with the psycho-social support of youg people: “We cannot divorce HIV from social development and we urge society to support the kids, especially youth living with HIV.”
Thabiso*, a 14-year-old from Soweto’s Mofolo North, started taking ARVs in 2008 when he was in Grade 1 and had become very sick.
His mother, Khosi*, says that at first her son was reluctant to take the medication, and wanted to know why he had to take pills when other children didn’t have to. That was when Khosi decided to tell her son the truth: that he was HIV-positive.
“He now lives openly with his status,” she told Health-e, adding that he took his medication diligently.
When Lolo Manamela’s* daughter died, she became the guardian of her granddaughter, Palesa, when she was a baby*.
“In 2005, when she was turning five, Palesa started to feel sick and was admitted to hospital where she was given ARVs,” said Manamela.
Although Palesa, now 17, knew she was on ARVs, her grandmother never told her she was living with HIV.
When she was in Grade 6, Palesa came home from school and asked her grandmother: “Is it true that I have HIV?”
“I had to respond, ‘Yes, it is true’ and explain how she got infected. She was not angry,” said Manamela.
From the age of 16, Palesa has been taking an adult regimen of ARVs. “The first time she took it, it made her sick, but as time went on she got better and coped well. She now collects the medication herself. Sometimes she says, ‘This HIV is not mine, but it is my mom’s’, but she says it with a smile and she’s not angry,” said Manamela.
Lindi Ngobeni, a registered nurse at Soweto’s Mofolo South Clinic, said there were many challenges facing children born with HIV – especially about when and how they learnt of their status.
“We decided to organise a support group for these children and to educate them about HIV and ARVs. We also help parents tell their children about their status,” Ngobeni said.
Sowetan twin sisters, Lungile and Nolungelo Zwane, were 10 when their mother died. Soon afterwards, Lungile became sick and was diagnosed with HIV and put on ARVs. Nolungelo, however, was tested and found to be HIV negative.
Lungile said she was angry that she was HIV positive, especially as her twin had been spared:“Why me? Life with HIV is difficult,” she said. “I decided to stop taking my medication and now I am 21 years old but I still don’t accept my status.”
Tietsi*, 14, also from Upington, has decided to stop his medication, telling his granny that he is tired of taking it now.
“I am worried that if he defaults, he might die,” said his sad grandmother, Mmaledi Dinga. “And I am disappointed because I always believed and trusted that he would adhere to his treatment.”
Patricia Makati, Tietsi’s support group facilitator, said she was also surprised that he had defaulted because he had always attended adherence club meetings and was part of a future leaders group.
* Names changed to protect the children.