When Martha Diaz's uncle died of HIV in 1991, her parents knew that she would ask questions. Yet, to her, there were more questions than answers. One thing was clear -- there was a growing need to help people, especially those her age (she was 17). What began as community outreach with HIV positive adults at the South Bronx Ecumenical AIDS Ministry at All Saint's Lutheran Parish, has taken Diaz down the path to teenagers with HIV. It's a decision she is glad to have taken. "Doing this helped me choose what I want to do for the rest of my life," she says. "HIV touches everyone's lives. Just being at risk makes you affected by it."
These days you will find Diaz at the Adolescent AIDS Program (AAP) at Montefiore Medical Center in Bronx, New York City, where she is peer educator, youth advocate and editor of Peer Power, a teen friendly newsletter about HIV, relationships and sexuality. Diaz takes her work seriously. "I have to do something." As the incidence of HIV escalates in urban youth, grass roots groups such as AAP are responding with novel HIV education, testing and treatment programs in their communities.
Convincing others that there's a problem isn't easy. "People don't 'get it' that teens are getting HIV," says Kathi Kuntz, outreach coordinator at Montefiore's AAP. Sexually active youth may assume that their partners are monogamous and HIV negative or free of other STDs (sexually-transmitted diseases). Often they are in relationships with a power imbalance. Adults may deny that teenagers have sex, or hope that fear of HIV will encourage abstinence. But perceptions differ markedly from reality. A 1997 study found that 55% of high school students (from eight U.S. cities) have had sexual intercourse by grade 12, while 21% had four or more sex partners. Despite the implementation of HIV education in American schools, one in three students weren't using condoms during their last sexual encounter.
In 1987, Dr. Karen Hein, founding director of the Montefiore AAP, observed increases in teen pregnancy and STDs. She predicted that teenagers would carry more of the HIV burden in the following ten years, since adolescents were already in the midst of an STD epidemic. Today, 25% of new HIV infections occur in American youth between 13 and 21 years of age, which corresponds to one new infection every hour. In 1997, AIDS was the seventh leading cause of death in adolescents aged 15 to 24 years. This trend will continue as the high rate of STDs among teenagers (25% of all reported cases) translates into an ever-growing HIV population. Girls, 15 to 19 years old, are particularly at risk since they represent almost half of all reported cases of chlamydia, a common STD.
Adolescents are as susceptible as anyone else to sexually transmitted diseases, but access to condoms is a problem. "Kids don't know where to get condoms at local health clinics," says Kathy Kuntz. "Some can get them at school clinics, but they have to ask. They can buy them at drug stores, but it's hard for teens to navigate these things." So the people at Montefiore hand out condoms and "kids dump baskets of them into their bags." Even if they come prepared, boys and girls are still vulnerable, since their partners may resist using rubbers. Kuntz also points out that these women pick partners from a pool of men with a higher HIV seroprevalence than other neighborhoods. "It's not a case of these girls prostituting, drug using or drinking," she says. "They do what every teen is doing." Boys face additional issues, Kuntz explains. "The boys are getting infected through male to male sex, but no-one is [acknowledging] that you don't necessarily need to identify as gay. Teen boys experiment."
A recent New York City study demonstrated that young men who have sex with men (MSM) are particularly susceptible to HIV infection. Researchers reported that 13% of the MSM that they surveyed were seropositive. HIV incidence was highest among African-American males, with a 22% infection rate, followed by mixed race (16%); Latinos (10%) and whites (4%). Seroprevalence increased with age, from 4% between 15 and 18 year olds to 19% between 19 and 22 year olds, but half of the 56 HIV positive men were HIV-negative two years earlier. Kathy Kuntz believes that prevention messages aren't effectively reaching youth. "There are an enormous number of kids in [New York] City," she says. "Even if every school had additional health education, peer mentors and after school programs, they are still missing all the kids not at school, the kids who aren't going to classes and not involving themselves in these activities."
Dr. Donna Futterman, director of the Adolescent AIDS Program since 1994, believes that educators need to tailor HIV education to the communities they serve, and speak in their language. It should be relevant and inclusive of all teenagers, including gay youth. Just as important, at-risk youth need access to HIV counseling and testing, social support and treatment.
In 1997, the Adolescent AIDS Program and an advertising agency conceptualized and created a social marketing campaign that targeted adolescents with references to sex they understood. Phrases such as "hittin' the skins" and "knockin' boots" became slogans on flyers and cards that encouraged teenagers to learn their HIV status: "Hittin' it? HIV. Live with it. Get tested. If you're 13-21 call citywide 718-881-TEST." When youth call the hotline, they are referred to one of eight New York City clinics that provide free, confidential HIV counseling and testing, and specialized care for HIV positive adolescents.
Montefiore's AAP hired a medical PR firm to generate community awareness and to promote the New York City "Get Tested Week" in April of 1998. The firm proposed launching the event with a public town hall meeting. In the lead up to the HIV testing week, the campaign ran broadcast and print news stories, public service announcements on television and cinema slides, advertisements on radio and bus shelters, and with other community partners distributed over 220,000 pieces of literature to peers, schools, stores, churches, restaurants, clubs and hair/nail salons throughout New York City.
Approximately 250 New York City adolescents attended that first "Let's talk about HIV" town hall meeting in the Bronx, a forum comprised of skits and discussions about HIV/AIDS and teen sexuality issues. During the "Get Tested Week," 500 calls were received on the listed hotline number. Of the 230 calls that were answered by volunteers, 55% were from 13 to 21 year-olds, and 93% accepted a referral. With increased funding from the federal government, the campaign was expanded to six U.S. cities in 1999: Baltimore, New York, Philadelphia, Washington DC, Los Angeles and Miami. Each city will provide similar literature as in New York, and all adolescents will be counseled and offered HIV testing with an oral HIV test.
For youth who take the next step and learn their HIV status, Alice Myerson, nurse practitioner at the Montefiore AAP says, "The majority of the kids [we] counsel and test are fortunately negative." Of the one hundred HIV positive adolescents who are currently receiving care at Montefiore Medical Center, half are girls and half are boys. The majority of young people are exposed sexually: females through heterosexual contact and males through sex with other males. Approximately ten to fifteen percent of teens were infected perinatally, but only identified during adolescence, and a handful were infected by injecting drugs. Myerson points out that there is also a very high incidence of sexual abuse among both the female and male teens that she sees. "Keep in mind," she says, "when we think of risk factors we think of promiscuity, [but] we have many young people -- both male and female -- who have become infected, who only had one or two partners. They're not promiscuous."