ADVOCATES FOR YOUTH

Transitions
Volume 15, No. 3, January 2004

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Living with HIV

By Christian Fuentes, Youth Advocate, University of California, San Diego, Mother, Child, and Adolescent HIV Program

I did not know what to think when I first learned—at age 13—that I was HIV-positive. I felt overwhelmed to be dealing with a disease that was considered a death sentence. For a long time, I would not discuss HIV with anyone except my doctor or nurse. Six years later in 2001, I started talking about my situation with some of my friends and family, and I felt that I needed to help other HIV-positive youth.

Now I work as a youth advocate at the Mother, Child, and Adolescent HIV Program at the University of California at San Diego, participating in health fairs, distributing information about HIV/AIDS, and presenting on HIV awareness, education, and prevention. I am the executive producer and moderator of a video in which seven HIV-positive youth share their stories. I also assist the HIV Youth Council in San Diego and the Youth-4-Hope program of AIDS Alliance to plan conferences and to involve youth in creating youth-focused HIV prevention services.

HIV-Positive Youth Face Serious Barriers to Care

It takes me by surprise that most people don't realize that youth face many of the same issues that adults face: money, housing, food, language barriers, immigration status, transportation, social stigma, isolation, stress, culture, gang involvement, drugs, alcohol, pressure from peers, negative relationships, pregnancy, violence, depression, discrimination, and ignorance. These barriers also affect youth's priorities. When a teen is worried about finding housing, getting his/her next meal, or being deported, HIV may not be a pressing concern. Moreover, if she/he doesn't know about services in the community or that testing and treatment are important, the teen may not try to get needed services. Finally, if youth fear disclosing their HIV status and cannot express their feelings about being positive, they may avoid the treatment services that will keep them healthy.

What Youth-Serving Professionals Can Do to Meet the Needs of HIV-Positive Youth

• Provide confidential, free or low-cost, youth-friendly services.
• Employ, train, and promote youth as well as adult staff.
• Ensure that all materials are available to match the language(s) and reading level(s) of the youth you serve.
• Engage youth in decorating the clinic or center.
• Ensure that each staff person is knowledgeable about HIV and about serving HIV-positive youth.
• Connect with HIV/AIDS service providers, social services, publicly funded clinics, and youth-serving agencies in the community so that you can refer youth for other needed services.
• Know the laws—federal, state, and local—that pertain to HIV status and to youth.

When I was diagnosed with HIV, I didn't know about support services for youth like me. I didn't know other positive youth who could help me understand how HIV would affect my life. Professionals need to educate HIV-positive youth about being positive and living a healthy lifestyle.

We are the S.A.V.E. Boys Group, a support group of HIV positive young men. S.A.V.E. stands for Strength And Victory Everyday. We were all perinatally infected—we were born with HIV.

BJ: When I found out that I had AIDS, I was mad. I was scared at first. I didn't like taking my medicine so I threw them away and that's not a good thing for anybody to do. My mom told me if I didn't take all of my medicine I would get sick. I got sick and started taking my meds again. Now I take them all the time.

Lil'man: I felt mad, depressed, a lot of things, because I had the virus.

Tee: Mom told me…I was ten years old. I didn't know what to think. I was tired and, I just went to sleep. In the morning I realized what she said, so I asked her who knew, and she said, grandmom, my aunt, uncle, godmother, and my family.

Ace: I was nine or ten. My mom told me. I thought it was real real bad. I forgot what she said. I just know she told me; I heard about HIV, knew it was a disease but didn't know exactly what it was. I didn't have anything to say at the time. My grandmom started talking to me more and I started to understand. I was devastated…not now…I just handle it the best I can. I forget about it all the time, until I take my medicine.

Blaze: When my friends came to see me in the hospital last month, they were making fun of a girl on my floor, saying she had AIDS. They didn't know that's why I was there, that I had AIDS. It made me feel really bad.

Jordan: I'm going to adopt a kid.

Tee: I'm going to adopt because I don't want my kid to have the same thing I have—HIV.

Transitions (ISSN 1097-1254) © 2004, is a quarterly publication of Advocates for Youth—Helping young people make safe and responsible decisions about sex. For permission to reprint, contact Transitions' editor at 202.419.3420.

Editor: Sue Alford

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