2005 New Cases: 1,806*

Black: 63%
White: 28%
Latino: 7%

Children
College Students
Women

Adolfo Aguilar
Outreach Worker, Chatham Social Health Council
Coleen Cunningham
Chief of Pediatric Infectious Diseases, Duke University Medical Center
Milford Evans
Benefits Advocate
Gerrod Henderson
HIV Positive teenager
Peter Leone, M.D
Medical Director, HIV/STD Prevention & Care Branch
Jonathan Perry
HIV Positive
Fred Wiggins
HIV Positive
Del Williams, Ph.D
Manager, Epidemiology & Special Studies HIV/STD Prevention & Care Branch

HIV/AIDS on Campus
HIV/AIDS & Kids
HIV/AIDS & Latinos
HIV/AIDS & Women

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*NC Department of Health and Human Services

What work do you do with HIV positive children?
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We take care of a number of children that are HIV infected, and when I say take care of them it means monitoring their HIV disease itself, how good or bad is their immune system, and how actively is the virus replicating?

For children with certain stages of disease, we'll start them on treatment, so part of the care will be figuring out what the best treatments for that child would be and prescribing the medications. And then you have to monitor for the toxicity to the medication because all the medications actually have very significant toxicities and they, actually, the side effects from the medicines can be fatal.

Another big part of what we do is take care of children who are born to HIV infected mothers. Those children, if the mother was diagnosed and treated appropriately, most of those children will not be infected, but they have to take medicine to prevent their infection for the first six weeks of life. So we'll monitor those children to see if they ended up being infected or not infected. We'll monitor them to make sure they're not having side effects from the medicines that they're on.

You're a strong advocate for HIV testing during pregnancy. Why is that important?
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I can't say it enough. Every pregnant woman should be HIV tested during her pregnancy because if she is infected then we can prevent the vast majority of transmission to the children.

There's a large number of issues that have to be addressed in treating pregnant women. What are the side effects of the medicines? What are the side effects of the medicines to the baby? What are the implications in terms of her own disease outcome, and what are the implications in terms of prevention of transmission to the baby? There are a lot of things we don't necessarily have the final answers on, so it requires a long time educating the mom on what's known, what's not known, and having her participate in the decision.

The monitoring, once you start a woman on treatment, the monitoring particularly during pregnancy is intensive because some of the medicines actually have more side effects in pregnancy.

Women are actually very responsive to HIV testing if it's offered universally and if it's recommended by their care provider. Care providers have tremendous influence on what their patients do, and if I as your care provider say it's really important for you to have this test done even if it's not likely to be positive but there's something we could do about it if it was positive, it would protect your baby. Studies have been done nationwide and in every type of clinic, so like a free clinic or a prestigious doctor's office, the whole gamut, over 95 percent of women will accept the testing if it's really recommended and it's recommended to everybody who walks through the door. If a clinic setting picks and chooses who they're going to recommend it to, so they say for some reason you look like somebody who might have HIV and therefore I think you should get tested, then your acceptance rate goes way, way down.

Women should be educated as to why that test is important, why it's not a reflection of anybody's perception of their behavior, their good behavior or their bad behavior, why it's just important for every woman who's pregnant to know what her HIV status is because there's something that could be done to protect a child if it was positive.

Almost all women want to protect their babies, and therefore I think the real issue is if we educate women, then women will go into their care providers and say, well, I want that test. Please make sure I have my HIV test as part of my other tests.

98 out of 100 kids born to HIV infected women end up uninfected and completely healthy if the woman's treated. If the woman's not treated, then 25 to 30 out of 100 will end up being HIV infected.

What are the challenges in treating children with HIV?
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Many of the drugs, there's less information about the right dose to use for children, whereas adults will have clearly established, you know one pill twice a day and it's been tested in a large enough number of people that you know it's pretty correct. In children people are often trying to extrapolate down using the adult dose, and although there's always a push to try to get the data that would prove that's the right dose, it's much harder to do, so that's a big issue.

Why do many families keep a child's HIV status secret?
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Often times families don't want the child to know, either - one- because they're afraid the child will tell friends and neighbors or they're afraid that it'd be too hard to explain to the child how they got it, and so the families postpone telling the child usually for very good intentioned reasons. But when you have an eight, nine, or ten year old child who needs to take multiple pills a day, it's very hard to explain to them why they're taking these pills if nobody's told them what they have. But also as they get to their teenage years and they want to have a boyfriend or a girlfriend, or they want to pierce their friends' ears, you have, these kids have to know what they have.

What I frequently see is families are so terrified of the reaction that they're going to get from the people around them, whether it's the church or the school or friends or neighbors, that they do keep it a big secret.

The stress of keeping that secret is actually very hard on the kids and their families. It also sends a message to the child that there's something that we're ashamed of and there's something that if people knew it about you they would be horrified. And that's such a sad message to give to a child.