I’ve got an article at the Atlantic about the new face of the African AIDS epidemic: about the generation of kids born with HIV who until recently were expected to die young, but are now growing up medicated and healthy to face a whole new set of challenges. How do you stick to your meds without letting your friends find out? What happens when you fall in love?
The article explores the experiences of two young Ugandans, a brother and a sister, who caught the virus from their mother. I’ll let you click through to read about them. In the meantime, here are a few of the takeaways:
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.’”
and:
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.
I reported this story a while back, but it turns out to be pretty timely. There’s a lively debate going on about whether the funding provided by the United States, which has made this transformation possible, should be extended. From the Boston Globe:
Obama administration officials say they are not capping the number of patients receiving antiretroviral drugs, but they acknowledge that they are seeking to control the ever-rising costs of the program, known as the President’s Emergency Plan for AIDS Relief, which has grown from $2.3 billion in 2004 to nearly $7 billion this year.
“People are struggling to find resources to honor the commitments we have made,’’ Ambassador Eric Goosby, US global AIDS coordinator, said in an interview. “We’re not at a cap point yet. If it gets worse, we’ll have another discussion.’’
The effects of the cost-cutting measures are beginning to be felt in parts of Africa. For patients arriving at some front-line AIDS clinics in Africa, the limits have the same effect as a cap, critics say.
“Virtually every day, we have to turn away patients who need treatment, including breast-feeding women,’’ said Dr. Peter Mugyenyi, a prominent AIDS specialist in Uganda. “We have to tell them ‘There is a freeze.’ ’’
I for one am hoping the program can be extended to save more lives. The new challenges being posed are huge, but in comparison to what was going on before (and still is going on for the large majority of the virus’s victims) they’re good problems to have.