The Southern African nation of Botswana is grappling with a relatively new problem in the evolving AIDS pandemic: It now has a large group of HIV positive adolescents.
The teenagers were infected at birth before Botswana managed to almost wipe out mother-to-child transmission of the virus. These children have survived due to a public health system that provides nearly universal access to powerful anti-AIDS drugs.
The teens pose a new challenge for health care providers in Botswana. Most of the kids have been on drug treatment all their lives. Some are becoming resistant to the most common medications. Others are becoming sexually active. Some are becoming rebellious and no longer want to take their drugs.
“When you’re a teen, your body tells you this and that,” says Consulata, a single mother who’s raising her 15 year old HIV-positive nephew. “Things keep changing. All sort of things change because he’s growing to a man.”
There’s still a strong stigma surrounding HIV in Botswana, and Consulata asks that only their first names be used.
Caring for HIV positive teenagers, health officials say, is more difficult than caring for children or even adults. A doctor at the main public hospital in the Botswana capital of Gaborone lists teenagers, along with battered women and drug addicts, as some of the most difficult patients to treat.
One of the hardest things is making sure that teenagers take their medications regularly.
Consulata says with her nephew, Moemedi, they have a strict routine. He takes his pills everyday at 6 in the morning and 6 at night. “We call it a ‘thing,’” she says.
“I just remind him. Hey! Your thing. … And he just remembers.”
Moemedi goes each month to the Botswana-Baylor Children’s Clinical Centre of Excellence — also known locally as the Baylor pediatric AIDS clinic — to refill his prescriptions. Dr. Marape Marape, the associate director for research at the Baylor Clinic, says in the past his facility mainly treated babies, toddlers, young kids. But because the drug treatment has been so successful, Botswana is now seeing a boom in teenagers with HIV.
“In the past, these children used to die at a younger age. Now they’re surviving into adolescences,” he says. “And you know, with adolescents there are a lot of problems that come.” The usual problems of teenagers defying authority, struggling with self-identity — but these children also have medical issues. Most have been taking powerful anti-AIDS drugs all their lives.
“So you see a lot of resistance mutations,” Dr. Marape says. “A lot of them don’t take their meds well. They’re starting to engage in sexual activity. You find that adherence levels are not as good as they used to be.”
In addition, most of these teens have lost at least one parent. Some have only recently been informed that the medications they’ve been taking for so many years is because they’re HIV positive. Also, many have ended up living as orphans either in group homes or the homes of relatives. Botswana is a rich country by African standards, but many Batswana are desperately poor. One doctor in Gaborone, predicting how well a teen with HIV will progress on antiretroviral drugs, says that the disease and these kids social situations are tightly intertwined. The more chaotic their lives, the worse their health.
Once a month, the Baylor pediatric AIDS clinic hosts Teen Club.
On a Saturday morning, about 120 teenagers gather in the parking lot in front of the clinic. All of the kids here are HIV positive and for many of them, this is the only place where they are open about their status.
Under a tall shade tree, the teenagers dance in a long line, each one holding on to the shoulders of the one in front of them.
Visually, the kids look like healthy teens. There’s one boy who uses metal crutches, but he’s thrown these aside for the Conga line procession. Another boy is extremely small. Dressed like a miniature office worker in a dress shirt and slacks, he appears to be only 6- or 7-years-old. But he’s actually 19 — and the oldest kid in the club.
Teen Club is essentially a support group for HIV positive teens. They play games, go on field trips, discuss the difficulties of being on anti-AIDS medications.
In Botswana, there’s still a lot of stigma around HIV. People whisper when they talk about it.
Consulata’s nephew, Moemedi, says that except at home or at Teen Club, he doesn’t talk about having HIV.
“It is very difficult for me to talk about it,” he says.
Even for a boy who was infected with the virus at birth, HIV remains cloaked in shame.
Teen Club is an attempt to change that.