Below: In 2011, First Lady Michelle Obama helped teens paint a mural outside the Adolescent Center.
GABORONE -- Packed into a clinic waiting room colorfully decorated with children’s art and African masks, dozens of Batswana teenagers close their monthly meeting with a choreographed dance to the “Teen Club anthem,” R. Kelly’s “The World’s Greatest.”
In the center of them all, 19-year-old Thato Chris Ramotswe breaks out with his own moves, waving his arms like a gospel preacher while singing “Can you feel it,” and coaxing the shyer ones to loosen up and dance along.
In many ways, Thato (pronounced Tah-toe) is the confident young man he appears to be. Thato wears skinny jeans and t-shirts that complement his tall and slender frame, and woos female admirers with his charm and talents as a young rapper. He balances work, a social life and volunteer commitments, and has earned the status of Teen Club Leader. Yet even with his confidence, Thato’s terrified of telling a childhood friend that he’s HIV positive.
Outside of his family, doctors and members of a club for HIV-positive teenagers, Thato hasn’t told anyone that he was born with the virus. “I have to show that HIV is not a deadly, killer disease like (people) think,” he says, although with friends, he dances around the topic.
He keeps two complementary Facebook pages, one for Thato, which is not his real name, and one for his true self, where he hasn’t disclosed. It’s an “experiment,” he says, so that people can be “friends” with an HIV-positive person. But Thato also gauges responses to “a handsome guy” -- Thato’s used a stock photo, although he too, is handsome -- who’s HIV positive. Despite warning his Teen Club peers to bring club issues to Thato, only, he too has broken the rules, sharing or even commenting on Thato’s posts, as if he’s daring someone to figure out who’s who.
In Botswana, and across Africa, young people like Thato represent a growing population: They are among the first group of teens infected with HIV at birth to survive. In 2002, Botswana became the first African country to make lifesaving antiretroviral (ARV) drugs widely available. Back then, HIV-positive babies born in Africa rarely lived long enough to see their teenage years. Today, fewer children are born HIV-positive and those infected at birth are growing up.
They’re a population fitting of the theme of this week’s 2012 International AIDS Conference in Washington, D.C., where thousands of diplomats, policy makers, clinicians, activists and people living with HIV gather under the banner of “Turning the Tide Together.” Unlike previous conferences, this year’s boasts a wider focus on youth and the infected-at-birth, a population experts say receives little attention when they need it most.
“They don’t want to take their medications; they’re confused about sexual activity,” said Mary Pat Kieffer, director of Technical Leadership Development at the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) in Washington, D.C., which works with children and adolescents across sub-Saharan Africa. “What we’re seeing in a lot of places is unless you have really good programs to deal with adolescents, a lot of them are dropping out of care.”
An Example for Countries Throughout Africa
In 2001, former President of Botswana Festus Mogae famously told a U.N. General Assembly meeting that Botswanans were “threatened with extinction.” Botswana had the world’s highest HIV prevalence rate. Roughly, 20 percent of its then 1.6 million population was positive, according to UNAIDS data. The following year, amid debates that monies would be better spent on HIV-prevention efforts, donors and health officials helped Botswana become the first African country whose public health system offered the needy, including pregnant mothers and children, free ARVs. Africa’s first pediatric-HIV clinic, the Botswana-Baylor Children’s Clinical Center of Excellence, opened in Gaborone in 2003.
As HIV-positive kids grew up, organizations like EGPAF and the Houston-based Baylor International Pediatric AIDS Initiative started clubs for teens across sub-Saharan Africa. In 2005, the average age of all children at Botswana-Baylor was five, and Thato was among just 23 teens. Today, the average age is 9, and staff say the clinic’s Teen Club enrolls more than a thousand 13- to 19-year-olds. At the Gaborone clinic, and across Botswana, the average age of pediatric patients is fast moving toward the teenage years, so much so that “pediatric HIV is really becoming an adolescent phenomenon,” said Dr. Mike Tolle, formerly an associate clinical director of Botswana-Baylor.
However, while countries like Botswana and Uganda are ahead in pediatric-HIV, experts say the situation varies across Africa. Too few HIV-positive pregnant women participate in a program to prevent transmitting HIV to their unborn baby. And when they do, these moms require support to prevent transmission during breastfeeding. Even in the HIV community, there’s a reluctance to deal with positive children, since their unlikely to transmit the disease, Kieffer said.
As these children age, managing an HIV status is just one of several challenges. Health officials say their families also need support. By the time Thato was diagnosed in 2004, he had already lost both parents to AIDS. He lived with his father’s parents, but he says they abused him, so an aunt took him in. Thato lights up when he talks about her, remembering how she treated him like he was her son, even when his cousins became jealous. But she became ill in 2008, and eventually bound to a wheelchair. Thato says he lost his second “mum” to AIDS in 2010.
“We’ll never see that again because the caregiver, the parents, are now surviving,” Tolle said.
Thato’s almost 20 now, but he still sees doctors at the pediatric clinic, which he calls his second “home.” How, and when, to transition teens like Thato, who are understandably attached to their doctors, to adult care is yet another lingering problem.
Vital Resources & Education
Teens commute from far-flung villages to attend monthly Gaborone Teen Club meetings, often focused on health education and leadership development. They gather in the parking lot outside the clinic, forming a large circle to play games and sing songs in Setswana. Teen leaders like Thato, who were elected by their peers, organize the group and take attendance, before the younger and older teens separate for different activities.
Last summer, a representative from Botswana’s Ministry of Health drew from a box of questions the 16- to 19-year-olds posed anonymously. One asked whether two HIV-positive people can have sex without re-transmitting the virus. No, people carry different mutations of the virus, and therefore take different medications. “How can you keep the virus undetectable?” a health educator asked. The group, which was all giggles when they learned how to use male and female condoms, fell silent.
“Come on, you guys know this. I know you know this,” pleaded a doctor, eventually eliciting replies like, “Practice good adherence” and “Take your ARVs.”
“You just don’t like doing it,” the doctor said.
Responding to teens’ needs for extra support, as well as their growing numbers, Baylor was recently awarded $300,000 from the Bristol-Myers Squibb Foundation to construct an Adolescent Centre that their billing as the first of its kind in Africa, with vegetable and flower gardens, counseling rooms, and recreation space. Staff say monthly Teen Club meetings can draw more than 400 young people, with half in rooms throughout the clinic, and the others outside.
Combating the Stigma
When I met Thato last year, he told me that he wanted to start a movement to combat stigma in Botswana. It would become more difficult to disclose as he got older, Thato said, so he wanted to start with his childhood friend. He ruled out his then-girlfriend because women too often seek counsel from their friends.
Cristina Peña, an EGPAF ambassador, first disclosed her status as a senior in high school. Growing up in Los Angeles, she was fortunate to be part of a large HIV-positive community, but says it became increasingly difficult to manage social groups when either everyone, or no one, knew she was positive.
“There may be experiences that you’re going through that you could never tell your friends or your schoolmates because those worlds don’t collide,” said Peña, who’s co-chairing an AIDS 2012 conference panel on infected-at-birth adolescents. Peña says she’s more confident now, only after disclosing “over and over again,” although it’s a personal choice.
It’s been 16 months since Thato and I had that conversation. Thato’s still working on disclosing to his friend.
“I imagine that the time (to tell him) would have been when I found out also,” Thato says. “He might ask me the same questions I ask myself. Questions of how it happened, how are you coping, do you feel any different?
“It’s not that I don’t want to answer them, or I can’t answer them, it’s just the answers won’t help me. The only thing for me to do right now is to focus on taking my pills and moving on.”