Compliance also seemed to correlate with education; the youths who dropped out of high school were less likely to take their medications consistently. But Dr. Lubin cautioned that the sample size was not large enough to determine if these are truly meaningful observations.
Some of the young people were very actively engaged in self-management; 8 knew their T-cell counts, and 10 knew their current viral loads. Those who were most compliant with their medication regimens were less likely to abuse alcohol or street drugs, and less likely to have run afoul of the law than those who were noncompliant.
Not surprisingly, given the age range of the subjects, use of alcohol and cannabis was common, with 18 reporting use of the former, and 13 reporting use of the latter. Only 4 of the 24 reported using “hard” drugs such as heroin or cocaine.
Although most were doing fairly well, seven had major problems with the law (arrests, detention, or prison), and six had already done jail time.
For Dr. Lubin and her colleagues, as well as for the patients themselves, the reunions were extremely moving and often bittersweet.
“It was so amazing to see them as big kids. We knew them as little children and now, here they were, fully grown. Many of them looked absolutely wonderful. They have a sense that they're doing well, and that they're going to be around for a while. But at the same time, it is very sad because their futures are very uncertain. And they're reaching an age where they are becoming sexually active and having relationships. And no matter how open-minded you are, HIV carries a huge stigma. They're struggling with the question of to whom they should disclose their status.”
Eleven of the former patients reported disclosing their HIV status to close friends, but an equal number had not disclosed it to anyone. And 16 were sexually active, but only 7 reported that they always disclosed their serostatus to sexual partners. Another 7 of the 16 said they'd never disclosed to a sexual partner, and 2 said their willingness to disclose was variable. Ten of the 16 said they used condoms all the time, and 4 said they used them on most occasions. Two said they had never used condoms.
Some of the youths, particularly the older ones, expressed the wish to become parents but feared having an HIV-positive child. Dr. Lubin noted that two of the girls in the cohort had already had their first babies, both of whom were HIV negative.
These youths were also struggling with the larger question of what to do with their lives—adult lives no one expected them to have. As a group, they have a lower educational level than the average, which limits their employment prospects. “A lot of them are really pretty lost. They're having difficulty transitioning to independence. They do not know how to deal with money or pay rent or anything like that. We've identified the need for programs that help them deal with basic life skills, and teach them how to deal with the various medical and social services for which they qualify.”