The Scarlet Letters: HIV and Adolescent Life in Africa. 2010
"Because I've tested myself and I've tested my children," Rose said, "I've managed to get a grandchild who is HIV-free"
The last time I was in Kampala, I met a brother and sister who had contracted HIV from their mother. The boy, whom I will call Peter (I've also changed the names of his friends and family), was just two days shy of his 16th birthday, and betrayed no visible signs of sickness. When I was introduced to him, in the Uganda offices of the Elizabeth Glaser Pediatric AIDS Foundation, not far from the city center, he was wearing his school uniform, a dark- green sweater over a white collared shirt. He looked a little bookish, with a round face, thin wire-rimmed glasses, and hair cropped tight to his skull.
I sat with Peter at the corner of a long conference table, and he quietly told me his case history. He'd been sick often as a child, he said, fighting off fevers, diarrhea, painful blisters, and hacking coughs. But it wasn't until he was 10 that he learned that he was infected with HIV. His mother, then expecting her sixth child, had tested positive during a prenatal HIV test and brought her children in to be examined. In Uganda, patients qualify for anti retroviral treatment when their CD4 count, a rough measure of the health of the immune system, falls below 250. Peter's clocked in at 54. He was immediately started on medication, a cocktail of pills taken twice a day.
With treatment, he remembers, his health improved quickly and dramatically. But then, at age 13, the markers of his illness returned: diarrhea, fevers, vomiting. While we spoke, he pulled up the sleeves of his sweater to show me where the rashes had come back. "These are scars from them," he said. "They come like sores, too many sores. When you scratch it, there comes a wound."
Not coincidentally, 13 was also the age at which Peter had begun boarding school--a common form of education in Uganda, even for low-income families. He lived in a cramped dormitory with about 40 other children and little privacy. Peter was keen to keep his condition secret, so he had arranged to store keep his pills in the assistant headmaster's office, on the far side of the school. "I had to wake up very early in the morning, before anyone sees me, to go in and take the medicine," Peter told me. "And then I had to come back, prepare myself, go to classes." In the evening, he would trek to the office again for another dose. But his office visits did not go unnoticed, and one day a couple of classmates walked in on him while he was taking his pills. Peter told them that the medication was for asthma, but they didn't believe him.
Their suspicions were confirmed, more or less, by Peter's English teacher, a tall, skinny man from northern Uganda, who would lecture the class on the evils of AIDS. "He would say, 'Some of us in class here, they didn't tell us they're HIV- positive. But we teachers, we know,' " Peter said. "He used to point at me, so that my friends started asking me, why is he always pointing at me." The man grew disdainful, calling Peter "useless" and "good for nothing," refrains quickly picked up by the children.
The taunts become more direct. When Peter coughed, a classmate would call out, "Remove your HIV from us!" "You didn't abstain well," a fellow student would sing; you're "a disgrace to your parents," another would jeer. A few close friends refused to believe the rumors, but mostly, the students shunned him. "You would give them something to eat, they would refuse it," he said. "They don't like sitting with you. They don't want to share anything with you." His peers began calling him a "zombie," Peter said, "someone is dead but still walking." Some older kids at the school began bullying and beating him.
For a while, Peter tried to sidestep his problems by skipping school. He'd sneak off campus in the morning to play soccer with local boys. But at some point during the school year, his avoidance took a different turn. Tired of the twice-daily office visits, of the constant needling, of being reminded day after day of his condition, he simply stopped taking his pills. "For me, it felt good," he said. "Because I knew I was going to leave those people who were discriminating against me and go somewhere else."
What followed was entirely predictable: Peter's health deteriorated rapidly, and his classmates shunned him all the more aggressively. Bouts of illness would leave him dehydrated and exhausted. One friend, a young man named Andrew, stayed true to Peter, helping him gather his books when he was strong enough to attend class--and nursing him when he wasn't. "He would wash me," said Peter said, "because I wasn't having strength to wash myself." As Peter's health worsened, Andrew sought permission to bring him back to his mother, and eventually took him to her, carrying him home on his back. Andrew refused to believe his friend was suffering from AIDS, Peter told me. And Peter never managed to tell him. "He's my closest friend," Peter said. "He knows everything about me. But I've failed to tell him that I'm HIV-positive."
When I met Peter, he was back on his medication--his hiatus had lasted about six months--and he looked healthy. His mother had gotten him medical care when he came home, and when his story came out, she got him free counseling as well, and enrolled him in a Catholic day school, where it would be easier to hide the fact that he was taking pills. But his lapse was not without permanent consequences. The virus in his body had become resistant to the treatment he had been taking, and his doctor had switched him onto an alternate regimen. When I asked Peter what he envisioned for his future, he told me he wanted to become a lawyer to help people in his community. His other hope, he said, was simply to survive. Taking medicine every day for the rest of your life is difficult, he said. He couldn't afford another mistake. "This is the second line," Peter told me. "And there's no third line."
A fatal disease can only be endured; a manageable one has to be managed. Perhaps 1.8-million Africans younger than 15 are living with HIV, the vast majority infected by their mothers during pregnancy, birth, or breast-feeding. In the developed world, transmission of the virus from mother to child has been all but eliminated. But in Africa, where caesareans are uncommon and many mothers can't afford to buy formula, an estimated 390,000 children younger than 15 were newly infected with HIV in 2008.
Until recently, African children born with HIV were expected to die young; roughly half never made it to their second birthday, and only 10 percent reached adolescence. But a massive rollout of anti retroviral medication, begun in 2003 and largely funded by the United States, has dramatically changed the picture. Today, more than 2 million people in sub-Saharan Africa are taking anti retroviral drugs (including 200,000 Ugandans), up from fewer than 50,000 in 2002. More than a million lives have already been saved as a result of the program, the largest public-health effort ever devoted to a single disease, and perhaps the most positive legacy of George W. Bush's presidency.
Sabrina Bakeera-Kitaka, a doctor at the Pediatrics Infectious Diseases Clinic in Kampala's Mulago Hospital, remembers opening a clinic in 2003 for adolescents who had been wrestling with the virus since infancy. "They were really short, stunted, and very wasted," says Bakeera-Kitaka. "You'd have a 16-year-old girl who hadn't started her menstrual cycle, or who hasn't developed any breast development, a 17-year-old boy who hasn't gotten any pubic hair. They were riddled with all sorts of diseases: tuberculosis, recurrent malaria, persistent diarrhea." But the drugs have changed all that. Today, Bakeera-Kitaka's patients are indistinguishable from their healthy peers.
In 2008, the World Health Organization began recommending that all infants born with HIV be medicated immediately. As treatment continues to roll out, more and more children like Peter will have a chance to reach adulthood.
Yet the teenage years, when not-yet-mature patients begin to take responsibility for themselves, are perilous for bearers of a chronic disease. Doctors studying diabetes track hemoglobin levels to measure how well a patient is sticking with the treatment. These tend to shoot up as children approach adulthood. "Obviously they're not taking as good care of themselves as when their parents were in charge," said Laura Stoppelbein, a psychology professor at the University of Mississippi Medical Center, who has studied treatment adherence among diabetics. "Adolescents don't tend to have a great appreciation for the long term. It's more like, 'My friends are here, and I don't want to be embarrassed and have to get my blood checker out or take a shot, so I'll skip it.' As opposed to thinking, 'In the long term, if I continue to skip, I'm going to have kidney disease or eye problems or circulation problems.'"
AIDS is easier to control than diabetes. Rather than having to continually monitor blood sugar in order to regulate their insulin level, patients simply need to take pills once or twice a day. Once firmly established on a treatment regimen, they can check its progress with their doctor as seldom as twice a year. But for HIV-positive people in places like Uganda, there are also a lot more reasons therapy is likely to fall apart. Shattered families, poor education, or the lack of bus fare to the clinic can come between a patient and the medication. "Many of those who fail on their treatment have poor social support," said Kitaka. "They have multiple caregivers. They are in boarding school."
The stigma of HIV is crushing in Uganda, as in much of Africa, and the incentives to hide the disease are immense. Many infected people are forced by their family members to use their own cups and plates, which are kept segregated from the family's dinnerware. When money is tight, infected children are the first to be pulled from school. The sense of shame is so strong that some HIV-positive mothers will breast-feed their babies, at the risk of passing on the virus, rather than raise suspicions. "Her relatives will be asking her, 'Why aren't you breast-feeding this baby?' " Kitaka told me. Because the disease is associated with sex, its victims are typically regarded as sinful, licentious, undisciplined--and unworthy of sympathy.
Among adolescents--prone, the world over, to easily mix judgment, hypocrisy, and naïveté--these sentiments seem particularly sharp. And for those who slip up in their treatment, the consequences can be unforgiving. "You don't get many chances in Africa with medication," said Yuka Manabe, head of research at the Mulago Hospital's Infectious Disease Institute and a professor at Johns Hopkins University. Whereas in the United States, 24 different drugs can be combined into many different types of therapies, options in the developing world are limited. "You get a first-line regimen, and you might get a second-line regimen if you're lucky," Manabe said. In a region where finances form the barrier to the availability of drugs, allowing the virus to build up resistance has dire consequences. "For every person that goes on second-line therapy here, nine people will [have to be denied] first-line therapy," Manabe explained--the alternate treatment is that much more expensive. "These are tough decisions. Is your first allegiance to the people who have been on? Or should it be on trying to give as many people access as possible? And if you blow it, 'Sorry'?"
Peter's sister, Beatrice, has never been sick. Nineteen years old, with delicate cheekbones, a small nose, full lips, and thin eyebrows, she wears her hair straightened and parted. When I met her at the offices of the Elizabeth Glaser Foundation, she was wearing a tight, sleeveless yellow T-shirt with California in pink across the front. While we spoke, she wrapped a blanket around her shoulders against the chill of the air conditioner. She didn't look like a woman who has grown up with the virus, and indeed, although she'd started medication within the past year, she'd been asymptomatic her entire life.
When she learned she was HIV-positive, Beatrice told me, she didn't really believe it. "I thought it was a bad joke," she said. "But as time went on and my brother still went on being sick, I really realized it." She was 15 years old, still in school. Overwhelmed, she soon dropped out and ran away from home, staying for a while with a group of musicians. For a long time, she behaved as if she had never been told she was infected. Medication was unnecessary--her CD4 counts were still high. She had a boyfriend, a young barber named Jeremy, whom she had met at a nightclub when she was 14. She didn't tell him she was HIV-positive, and she continued to have sex with him after she found out; eventually, she moved in with him. Only after discovering that she was pregnant last year did she begin to take steps to control the virus, enrolling in anti-retroviral therapy to avoid transmitting HIV to her baby.
Beatrice wasn't a model patient, she told me, sometimes skipping her medicine when she couldn't bear the thought of taking it and hence affirming her condition. She still didn't tell her boyfriend that she was putting him at risk. He found out only by accident, when a local newspaper published Beatrice's picture and name in a story about living with AIDS, reported during a counseling session she had attended. "He showed me the newspaper, the whole story about my family... everything," Beatrice said. "My brother's name was there. My mother's name was there. My name. My photo." He was furious, she said, and threw her out of the house. "He told me, 'Bea, please go away. Get out and go away. I don't want to see you in my life again. Plus your baby, go! If you want him to die, bring him here. I'll kill him, and [so what if they] put me in prison, because I know I'm also dead.'"
The newspaper story transformed Beatrice's life. "Whenever you pass someone, they call to you, 'Hello, I saw you in that newspaper. You're sick. You're HIV-positive.' I just keep quiet. I walk away. And then another tells you that. Another one tells you that." Beatrice seldom goes to the discothèque where she met Jeremy anymore--she'd see too many familiar faces, few of them friendly. Most nights, when she can scrape together the money, she drinks beer by herself in the small room she now rents, far away from her old neighborhood. "For me, nowadays, I live alone, stay alone, sit alone," she said. Sometimes she goes to a nightclub far from her house where nobody knows her. If someone tries to pick her up, she just leaves.
I asked Beatrice why she took precautions to protect her baby, but not her boyfriend. "I didn't trust him so much," she said. "At first, he moved with too many girlfriends. Whenever I'd come, I'd find four or five condoms. I'd find women there... But for the baby, it was so innocent. I thought of him being sick, me being sick, my mother being sick. So I rushed to the hospital."
I asked if she would tell her next boyfriend about her disease. "For sure I will not tell him," she said. "I know what I've faced. If I tell him, I know that he is also going to drop me." She was fatalistic about the further spread of the disease, and her own role in it. "You can't tell me that someone can abstain from loving someone. And you can't stay with someone for four years and still use condoms."
As treatment for AIDS becomes more widely available, more and more children living with HIV will reach an age when they and their peers begin falling in love. "In the past, they would be so sick, they would be busy trying to keep alive for one extra week, for one extra month, for one extra year," said Peter Mugyenyi, the head of Uganda's Joint Clinical Research Center, the largest provider of anti retroviral drugs in Africa. "But now they are healthy. They are energetic. Their sexual drive is back. You have to start addressing sexuality in the era of AIDS treatment, as opposed to sexuality in the era of AIDS death."
When Sabrina Bakeera-Kitaka polled HIV-positive adolescents in her clinic, she found a wide variety of sexual experience, but little sexual knowledge. One in four of the patients she surveyed reported having had sex. One respondent counted 13 partners. Three couldn't remember how many partners they had gone to bed with. Of the 800 adolescents enrolled in her program, more than 40 girls were expecting children or had already become parents. "Some of them have this thing, that 'I have to leave a legacy,' " Kitaka said. " 'Mother died, and who knows if I'm not going to die?' Some have insinuated that people at home are pressuring them to get babies. In some societies in this country, if you don't have a baby by 18 years or so, then you're not a woman."
Bakeera-Kitaka's study also found that the patients in her program understood little about the risks to which they were subjecting their sexual partners. Some boys thought that semen did not carry HIV; some girls thought the virus would bleed away during menstruation. Most alarming, some said they wouldn't disclose their infection to their partners, out of fear of rejection--and that they preferred partners who were HIV-negative.
According to the United Nations, young people between the ages of 15 and 24 account for nearly half of the world's new infections. The public-health risk is compounded when adolescents struggle to keep up with their treatment. Medication lowers patients' viral loads and thus their infectiousness, but only if the regimen is accurately followed. Diabetes may be harder to control than AIDS, but skipping a shot doesn't make diabetes stronger or increase the chances you'll pass it on. As Bakeera-Kitaka said, "There's no bigger catastrophe than having a whole group of adolescents spreading a resistant virus."
Peter and Beatrice's 41-year-old mother, Rose, lives on the outskirts of Kampala in a large house she built with her husband before he died suddenly in 1994. The electricity was out on the day I visited them. We sat on sunken couches in the living room; light shone through the doorway onto the bare concrete floor. The house was unfinished. Yellow walls rose up to meet bare rafters and the underside of the metal roof.
The newspaper article that upended Beatrice's life affected her mother's as well. Rose had taken in Beatrice's son, a round-cheeked 8-month-old boy we passed from lap to lap while we talked. She had scraped together enough money to help with her daughter's rent, but she herself had stayed behind, and she has continued to endure scorn from her neighbors. "People don't want their children to come and play with my children," she said. She pointed to a pile of bricks in the yard: "I want to fence myself in and stay inside."
As better access to medication slowly turns HIV from a death sentence into a chronic disease, one might think that the shame associated with its impacts--emaciation, infirmity, death--would start to fade. That may yet happen in Uganda, but it hasn't so far. Indeed, in some respects, the shame has only grown. In part, that's Bush's other African legacy: the flood of anti retroviral drugs has been accompanied by a rising emphasis on a rigid morality. Until 2008, the U.S. AIDS plan contained an explicit requirement that one-third of the resources dedicated to preventing new infections be directed toward programs promoting abstinence. The Ugandan government, which once tackled the disease head-on with blunt advice on condoms and slogans like "zero grazing," has purged explicit images from AIDS-education materials. Illustrations depicting correct condom use have disappeared, supplanted by material on "ethics, morals and cultural values." ("For pupils, sex leads to great sadness," reads one snippet.) "Instead of understanding the disease as a public-health crisis," said Joseph Amon, the director of Health and Human Rights at Human Rights Watch, "it became understood as a test of moral character."
Prominent Ugandans have picked up this banner. The first lady, Janet Museveni, attempted to conduct a "virgin census" at the country's main university. One Ugandan parliamentarian proposed offering "chastity scholarships" to girls who could prove they had never had sex. Cultural notions of sex and morality are of course shaped by many forces; government policy is only one of them. Nonetheless, with more and more people living long lives with HIV, many from birth, a single-minded message of abstinence and morality seems not just counterproductive, but dangerous. Admitting that you carry a potentially deadly infectious disease and taking responsibility for containing it are hard enough; the near-certainty of censure by your friends and neighbors can make responsible action almost impossible.
It seems unrealistic to base policies on the expectation that asymptomatic HIV-positive youth will permanently abstain from sex, and foolish to drive them underground and away from the medication they've relied on since childhood. Today, the spread of resistant forms of the virus is still relatively rare in Africa, though it is said to be rising. And while resistance is limited, for the most part, to the most common anti retroviral regimens, the more expensive treatments available in other parts of the world are unaffordable to most Africans, so it's troubling to see the virus beginning to break through the first fire walls.
Before leaving Rose's home, I asked her how she was dealing with the rejection by those around her. "They can talk," she said. "It's up to them." The important thing was that she had learned her HIV-positive status and knew she had to take her drugs. "Tomorrow they could die," she said. "I will still be here. I know what I am, and I know what to do." In addition to infecting Peter and Beatrice, Rose had transmitted HIV to her youngest son. Half of her children carried the virus. As she spoke, Rose gazed at Beatrice's son, who was on a couch by the door, playing with Peter. For the baby, the prevention methods had worked. "Because I've tested myself and I've tested my children," Rose said, "I've managed to get a grandchild who is HIV-free," she said.