While the number of young people living with HIV across the country rises steadily, the Seattle area continues to have a low incidence of HIV among youth aged 13 to 24. This transmission rate has remained low in our area due in part to access to clean needles and targeted risk-reduction programs. In addition, youth-friendly community-based organizations offering free healthcare to homeless youth, recovery services for substance users, "teen feeds" and intensive case management also contribute to a healthy youth population.
In December 2000, 179 youth [ages 13 to 24] were reported as living with AIDS in King County. Between September of 1999 and December 2000, 229 additional youth tested positive for HIV, without reportable AIDS. The actual number of youth living with HIV is undoubtedly higher, partly because many young people currently infected with HIV will not test positive until later in life.
YouthCare is a service agency for homeless and at-risk youth that also provides case management to HIV-positive youth in King County. Currently, YouthCare serves about 20 young people living with HIV and AIDS. Many HIV-positive youth access medical care at the Northwest Family Center at Harborview Medical Center, where Nurse Practitioner Mary Jo O'Hara supervises the programs for young adults.
"Most of the young people that we [YouthCare and Northwest Family Center] are trying to provide services for are not identifying HIV as particularly important," O'Hara says. "They don't feel sick, they don't look sick. So other issues of food, shelter, and survival take precedence." In addition to the typical young adult concerns, many HIV-positive youth also face issues surrounding sexual orientation, homelessness, substance use, or mental illness. HIV is another factor to add into an already complicated life. Many also have a history of abuse and trauma, which can compound the stresses they face in daily life.
Nationally, youth are facing an ongoing crisis of HIV and AIDS. Every hour, two Americans under the age of 25 become infected with HIV, accounting for at least one-half of all new HIV infections. One recent study reported that 50% of sexually active high school seniors stated that they use condoms "only some of the time."
"Clearly these are people who grew up with HIV," O'Hara says. "What that tells us is, they know. But the circumstances in their lives that lead to [becoming HIV-positive] don't seem to be under their control. There are definitely groups that have gotten the [HIV prevention] message," she continues. "[Those at risk] are young people that life often happens to, as opposed to, for. What we need to do to support those kids is bigger than saying 'HIV is an STD you need to be aware of.' It's about education and skills, and really giving a belief that there is a future. It certainly isn't about knowing about HIV."
"One of the other things that we need to address," O'Hara believes, "is that the young people who are at risk are probably young people that struggle with a variety of other mental health issues -- post-traumatic stress disorder, depression. It's cumulative life experience with bad things that will put you at risk for HIV. It's more complicated than 'use a condom every time.'"
Recently, the Seattle/King County Public Health Department began a program to provide HIV testing and counseling to youth throughout the area. In order to make the testing more "youth-friendly," oral saliva HIV tests are used. Testing takes place at agencies identified as serving youth at higher risk for contracting HIV, particularly targeting homeless and sexual minority youth. So far, 185 young people have been tested; however, no youth have tested positive yet.
In the Puget Sound area, the population of HIV-positive and at-risk young people is scattered throughout a wide geographic region, making HIV-specific outreach and care difficult to access. Great efforts continue to be made to get youth tested for HIV and to let them know the importance of being aware of their HIV status.
Kelly (not her real name) was 14 when she found out she was HIV-positive. "I was really sick with pneumonia or something and I went to the doctor. I didn't ask them to, but I guess they figured they should check for HIV. I hadn't heard very much about [HIV] before. Just that I should always be safe -- have the guy wear a condom. I didn't think I was at any risk for HIV. Now I know it doesn't take very many people to get something like that. [The doctor's office] called me to come in a week later and said they found out what's wrong with me. It was kind a big shock. I told my mom first. She took it harder than I did. She was crying and hugging me."
Now 17, Kelly shares the ways in which HIV affects her day-to-day life. "It's scary, because you always have to worry about if you ever get hurt you have to keep the people that are trying to help you away from you. Most of the people that I'm around do know, but a few people at work don't know and if I cut myself at work (in a restaurant) they try and help, and I'm always trying to back away from them." Having HIV has also impacted Kelly's hopes for her future. "I would like to have a baby when I get older. I know [my healthcare provider] has told me about the medicines that they have, but I'm still kind of worried that if I have a baby it will get [HIV]."
Kelly now lives with an older sister in the Seattle area. "She gives me a lot of support -- always talks to me about keeping myself healthy." One of the things Kelly does to stay healthy is take a daily combination of three anti-HIV medications. "It was hard to take at first, and then I made my own little method to remember. When I get up and brush my teeth I take them, and when I go to bed I brush my teeth and take them again. It's pretty easy to remember."
Kelly decides whom to tell about her HIV status on a case-by-case basis. "It mostly depends on the person. If they seem like a nice person, and they really like me then I figure that I'll let them know. A few of my friends know. They really can't believe it because I'm so young." Kelly also finds support among a group of young HIV-positive women who meet at the BABES Network in Seattle, and from her case manager at YouthCare. "[My case manager] helps with bus fare to work and to help me get around to doctors appointments and stuff. Sometimes we go out and have lunch together and talk about anything that I need to talk about. At first I really didn't want to have a case manager, now I think it's pretty helpful. Young people usually don't want other people knowing stuff, but once you get it off your chest, you feel so much better."
Resources for HIV-Positive YouthThe Lambert House
Support for HIV-positive youth
Northwest Family Center