Taking medicine tough on children with AIDS

Pediatrician concerned about rising number of adolescent infections

Dr. Janet Englund is an associate professor in the Department of Pediatrics at the University of Chicago and the director of the pediatric and adolescent HIV program at the University of Chicago.

CNN: What is the biggest difference in your work with pediatric AIDS patients since 1985?

Englund: The biggest difference is that our patients are doing very well, both clinically and physically, and staying out of the hospital because they are on highly active anti-retroviral therapy. So the biggest difference is the patients are doing very, very well.

CNN: What's the biggest challenge in treating children with AIDS today?

Englund: I think the biggest problem is enhancing compliance (in taking medications). That is, we have the medicines, but if the medicines are sitting on the refrigerator shelf, they aren't doing any good.

CNN: Is that because the medicine regime is so difficult to follow?

Englund: There are many, many, many reasons why that's the case. Yes, the regimen is difficult. Yes, the medicines taste bad. Yes, the kids are getting older, and they're adolescents and they don't like to be told what to do. Yes, it's a pain in the neck and a change in lifestyle. Yes, there's denial that they're not sick. They don't feel they're sick because they are doing so well, so why should they have to take their medicine? I think there are about 20 other reasons. But compliance is a very, very big problem.

CNN: From a doctor's perspective, what's the hardest part of the disease for children to deal with?

Englund: For younger children, particularly those, say, under 10, taking the medicine is a big problem. For most of them, it's their parents doing it. I think taking medicine is the hardest part of the disease. On the other hand, these kids in general have a parent that gives it to them. In general, they have to come to the clinic every two to three months, but the parents have to take the time out of the parents' workday to bring them there. And they come to the clinic, and they play games and have fun. I think for the children under 10, it's a very big impact on the parent's life, and perhaps not so much on the children's life. Our children don't come into the hospital anymore. They aren't sick. They don't feel sick. They don't look sick. They don't act sick.

CNN: What about adolescents?

Englund: In contrast, by adolescence, they understand in part, that they have an illness, but they don't feel different, and they certainly don't want to be treated differently. Because that is the rule of an adolescent, you want to fit in, and taking medicine makes you different. Whether that's medicine because you have diabetes or because you have AIDS, it doesn't matter; you don't want to do that. Educating and motivating these young adults to keep on taking what's very good for them is difficult.

CNN: What are some of the tools that you use to get teen-agers stay on track with their medicine?

Englund: We work with the families closely; we try to educate them and motivate them. We have teen groups and seminars and home visits by our nurses. We have videotapes; we have books; we have lots of different methods. The best one is that we have the parents retain control of the medicine, if you have a parent or guardian who is able to do that.

CNN: In your experience, has the stigma of having AIDS lessened over the years since the disease was first diagnosed?

Englund: You know, you like to say yes, but I still don't think so. I still have kids in school being told not to use the drinking fountains or the bathrooms. I still have family members who won't go to a funeral of a family member who died because the family member had AIDS. There is improvement, in part mandated by law. The schools can no longer refuse school admittance to a child with AIDS. There is education of the teachers and laypeople as to how the virus is transmitted. So I think that has helped. I think you could perceive it's better, but on a family basis, at least with the families I deal with, there is still a lot of prejudice, ignorance and blame that goes on in these families.

CNN: What is your view then of the future? Are you optimistic? Are you hopeful things are going to get better?

Englund: As a pediatrician, I am wildly optimistic that we will be able to, in the United States, to continue the great decline in cases of pediatric AIDS that we've had. The number of children who are infected is going down and continues to go down due to treatment of the mothers. Certainly, less than 10 percent of babies born in the United States are infected, so that's good.

As good as that is, the bad news is the number of adolescents infected is dramatically rising upward because, in part, of the complacency that AIDS is no longer a problem. You don't see people walking around who look like skeletons. I think the young people don't think it's a problem, don't perceive it as an immediate risk, and adolescents as a group are invincible. That's part of the psyche of being an adolescent. So I think we are seeing great hope in the decreasing number of infected babies. At the same time, I and my colleagues are having increasing anxiety about the increasing number of infected adolescents. And these adolescents are then, in turn, potentially going to be having children also, and that's going to be of concern. But right now, we are at a good point in our epidemic, I think. We have the tools and the knowledge and the drugs to help control it. We need to do more.

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