One half of all new HIV infections in the U.S. are among people between the ages of 15-24. Of these, 40% are young women. These young men and women represent the new face of HIV. Since most, if not all, youth infections are through sexual contact, many might think that youth are promiscuous. (100% of all HIV+ youth who have been clients of the Downtown Youth Clinic have been infected through sexual contact). However, such a belief is incorrect. While their behavior may have been risky, many HIV+ youth receive an HIV diagnosis after just one or two sexual experiences, or after being in a long-term, perceived monogamous, relationship. The biggest risks have to do with being in relationships with unequal or shifting power dynamics (male/female, masculine/feminine, older/younger) with an unaware, fearful or uncaring partner; having a false sense of security about the level of commitment of their partners; and assuming that "looking healthy," identifying as "straight," and being married meant there was no risk.
While many adults may be able to relate to such risk behaviors (as we were once youth ourselves, or even as adults today), many youth find it very difficult to relate to an HIV diagnosis, its treatment and care, and the emotional challenges that arise. When young people receive an HIV diagnosis, they often have nowhere to turn. They likely do not communicate with their parents about sexuality. Disclosing an HIV diagnosis can feel overwhelming. They also cannot turn to peers and friends for fear of stigma and rejection. Most HIV+ youth receive a diagnosis of HIV just as they are discovering sexuality. They are exploring, developing and testing. They are also to a certain extent unsure of themselves, and fearful of rejection.
Disclosure to sexual partners of HIV status is the number one most challenging aspect for most youth. Positive youth demonstrate an admirable level of courage in relation to disclosure and a sense of caring and responsibility for their sexual partners. There are numerous stories of taking necessary precautions to protect partners only to have condoms break, precipitating disclosure and pursuit of post-exposure prophylaxis and testing for partners. Many positive youth bring their partners to the Downtown Youth Clinic (DYC) for HIV testing.
The most important thing in reaching and serving HIV+ youth is to meet them where they are both emotionally and physically. Services must be made accessible to youth. An adult model involving appointments, receptionists and phone trees does not work well. They often do not feel comfortable going to adult clinics and consequently do not access services. Most important in developing a youth model for an HIV clinic is to make it youth friendly. First, start with a generic name. Next, have a clinic that is oriented to general youth health addressing STDs and reproductive health. Services for youth should be free, with transportation and childcare services available to enable easy access. At the DYC, rather than a waiting room, youth have flop rooms with TV, VCR, DVD, and computer. Pizzas are often ordered in the afternoon, creating a nurturing environment. But DYC goes beyond creating a space that is friendly. Youth need to be seen when they need to be seen, and they are never turned away. If a young person wants to see a provider or needs talk to someone, he or she can call and immediately access a youth advocate. At DYC, there is always a youth advocate who is ready to talk and able to set up an appointment for that day if needed. Since appointments often do not work within a youth mindset, drop-in clinic hours are utilized. Paperwork is kept at a minimum with youth advocates interviewing young people to capture necessary information. Youth can maintain anonymity if they choose with a false name. Also if a young person needs to be met at a high school clinic, an adolescent clinic, a hospital, at home, or at some other site, that is where he or she is met.
Youth treatment advocates and youth providers should recognize and respect the particular needs and developmental status of HIV+ youth. It is important for youth to understand their own choices as well as be educated about their choices in relation to treatment, care, and disclosure. Providers should only interface with parents with the consent of the young person. Such an interaction begins with a basic HIV 101 for parents and follows with an explanation of where their son or daughter is within this picture, and what his or her treatment plan includes. Youth also need support through peer advocacy, treatment advocacy, case management, and social support. Peer advocacy provides practical support in order to address social, medical, educational, and housing goals. Treatment advocates not only educate youth about medicine, but also check in with them about adherence. Depending upon the specific and particular needs of an individual, some youth may require case management to address housing or substance use issues. Beyond these practical needs, youth also need social support. An HIV+ diagnosis can precipitate isolation and drug use. Like HIV+ adults, HIV+ youth benefit from peer based groups with other HIV+ youth. Workshops, focus groups, and social meetings enable peer exchange and support.
While this model is responsive to youth needs, there are still gaps to HIV+ youth services. Unless a youth has his or her own insurance, he or she cannot be admitted to a hospital via a clinic. The DYC can provide care for youth, and has accessed free labs and free HIV meds through ADAP, however, non- HIV related medication and ancillary services are not accessible. Moreover, safe sex education, as well as HIV prevention and testing are inadequate. In California, there are state mandated curricula for HIV prevention; however, due to lack of resources these are often inadequately delivered.
In the face of these challenges, young HIV+ men and women are unbelievably positive. In the midst of ignorance and stigma, they are coping with HIV through the support of peers, providers, and programs that respond to their needs. While an HIV diagnosis can certainly be a challenge, youth usually come to accept their diagnosis and know that they can move forward. HIV is not what it once was historically. An HIV diagnosis is not a death sentence, and youth do not need to fear that they have lost their dreams. While HIV medicines are not a cure, they can prevent progression of illness, and treatments are getting better. With proper care, futures are still possible. All of your dreams can still come true.
Michael D'Arata is a nurse practitioner at Summit Alta Bates' East Bay AIDS Center and the Downtown Youth Clinic in Oakland, California.
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