When Dr. Elaine Abrams founded the Family Care Center at Harlem Hospital Center, one of New York's first clinics for the treatment of children with H.I.V. and AIDS, that ''treatment'' consisted mostly of easing their deaths. Through the early 90's, 10 to 20 babies were dying at F.C.C. every year; at one point, an H.I.V.-infected patient lived to the age of 6, and the doctors considered that child a medical miracle. Today -- thanks to protease inhibitors, combination therapy and other improvements in the treatment of the virus -- the average age of the approximately 135 H.I.V.-infected children being treated at F.C.C. is 13 and rising. It's possible to imagine the day when the clinic itself will be obsolete. ''Over the years,'' Abrams says, ''we've turned from a medical program with mental-health support to a mental-health program with medical support. It's the last leg of the journey.''
But that last leg has involved psychological complexities no one could have foreseen. Children born with the virus also aren't born with the knowledge that they carry it; this was a nonissue when few survived infancy, but as their prognosis improved, the whole issue of disclosure -- of what they know about their own disease, and who tells them, and when, and how -- began to reveal its intricacies. ''I used to believe that all the kids knew,'' Abrams says. She tells of one 14-year-old who knew all about T-cell counts and taking meds but had never contemplated being H.I.V.-positive. ''The kid had been taking these drugs every day for three years without knowing,'' Abrams says.
When A.'s son asks questions -- which he does -- she tells him he has a blood disease, which, as she points out, is not untrue. ''I'm terrified of people knowing,'' she says, ''very terrified even for myself. No one knows. My brother is the only one in my family that knows. Not my dad, not my sisters, my stepmom, no one.'' What is she most worried about? ''The simple things, you know. If it's not the sympathy, it's the pushing away. It's either one or the other. You either get the sympathy, or you get the boot. No one wants to be bothered. No one wants to touch you -- don't come over here, don't get nowhere near her, you know. And that's what I'm afraid of for my boy with the other kids, because kids are cruel. And there are a lot of parents that are cruel too.''
The subject is even more charged when the H.I.V.-positive child lives with a biological parent. Such parents have good reason to fear, at least initially, anger and rejection from their own children; they may also dread the prospect that the conversation will have to include a disclosure of their own H.I.V. status, as well as the behavior that led to it. ''It's a web,'' Wiener says. ''You can't just go to the child and say, O.K., this is what you have. It means disclosing other family events.''
But the greatest inhibitor -- which the child's good health and outwardly normal childhood only aggravates -- is guilt. When Q. faced her own diagnosis shortly after learning her baby daughter's, her eldest child was 16, old enough to handle the information in a mature way; still, Q. couldn't bring herself to tell that daughter for two more years. ''They knew their sister took meds,'' she says of her other children. ''And they knew I took meds. They just didn't know why. They knew it was important. They'd say, 'Mom, did you remember to take your meds?' But they didn't know what it was for.''
The doctors at the Family Care Center urged her to start discussing it directly with her family. ''But I'm not a person who's easily swayed,'' Q. says. ''It wasn't that I wasn't ready to discuss it with my child but that I wasn't ready to deal with the fact that she might feel ashamed of me over it, or angry with me. I wasn't willing to hear her say: 'Ma, how could you have done that? What kind of life was you living?'''
Their continued good health, indeed their survival, depends on their continued adherence to the same strict drug regimen that has kept them alive thus far. Keep taking your medicine: another simple idea that in the lives of these young people turns out to be burdened with psychological complexities -- this despite the fact that even a few missed doses can allow the virus to develop a resistance to a given drug, permanently compromising or nullifying that course of treatment. What, apart from the desire for a respite from the sometimes grievous side effects, would induce someone to stop taking lifesaving medication? Primarily stress and depression -- circumstances to which any teenager might be considered at risk, but to which an adolescent concealing a stigmatizing condition is especially prone. ''There is definitely a relationship between adherence and depression,'' Wiener says. ''There's a tremendous amount of stress associated with lying, with living a life of secrecy.'' Going off meds can also be an adolescent's expression of the desire to hold the reins of his or her own life for a change, even unto self-destruction, broadly analogous to an anorexic's refusal to eat.
However understandable the desire to deny, if only for a little while, the burden of their illness, neglecting to take meds consistently is about the most unwise thing H.I.V.-positive young people can do. There's the risk of undermining their own course of treatment. And as if that weren't enough, they could develop (and potentially could transmit) a strain of the virus that has built up all sorts of resistances to existing medication. As Mellins says, ''How do you instill within kids a healthy sense of sexuality and at the same time a sense of fear?''
''I have two patients,'' Ng, the psychiatrist at the Special Needs Clinic, says, ''17 and 18 years old. One wants to be in the Armed Forces, and the other wants to be a pilot. Given their status, they've heard plenty about issues related to their having sexual partners and how to remain safe. But now they're hearing about how they're not able to do something they want to do with their lives, and once again, H.I.V. is there.''
''This epidemic just marches on,'' Arpadi says. ''You and I will go to our graves, and there will still be this terrible epidemic. But in this country we've effectively stopped transmission to babies, so now we have this sort of cohort of aging kids. And I really wonder how they're going to make any sense of their lives. Everyone before them died earlier on, and there's no more kids like them behind.''
by Jonathan Dee
No comments:
Post a Comment