Lee Kapshaw*, a laid-back San Franciscan who is part Native American and part white, was 16 when she tested positive for HIV at a high school clinic in Berkeley, California four years ago. She had just come out of the hospital after being treated for chlamydia, a sexually transmitted disease common among teens, but couldn’t shake a bad case of swollen glands. Her mother suggested she take an HIV test -- just in case. Kapshaw never expected a positive result.
Yet when she showed up at the clinic two weeks later, a stunned counselor informed the teen that she was, in fact, HIV positive. “I was the counselor’s first test ever,” Kapshaw recalls. “She didn’t know what to say to me.”
In a state of shock, Kapshaw started going to Berkeley’s East Bay AIDS Center, a government-funded HIV clinic where, in 1992, she was one of the first adolescent patients. “It was really hard for the staff because I was so young,” says Kapshaw, who continues to get HIV care there. "I heard that comment -- ’You’re so young’ -- a lot." Kapshaw only wished that somebody -- anybody -- could see beyond her age.
But her age was a problem. Looking for support among others with HIV, Kapshaw found no one who shared her experiences. “I was going to a group that was, like, 40-year-old women talking about menopause,” she says. “It just wasn’t for me.”
Kapshaw’s chronicle of adversity is echoed by many other HIV positive young people. The stories they tell are sadly alike: Stories of not knowing where to turn when they are diagnosed, of living in mortal fear that their parents will find out, of parents disowning or punishing them when they do, of doctors who treat them like children and give them no say in their medical treatment; stories of isolation and loneliness and a longing to find one another. But increasingly a different story is also being told. Positive youth have begun to speak of empowerment, of learning the facts about their disease and taking charge of their treatment, of meeting and networking with other youth with HIV -- of slow but definite progress in making society acknowledge they exist.
At this paradoxical moment in the epidemic, when hopes have again been raised by a new crop of drugs that nonetheless are too late or too expensive for many, teenagers are further confounding our expectations of this disease. Youth seems to hold a magnifying glass up to AIDS; it amplifies both the pain and the promise of life with the virus. So while the rest of us struggle to catch up with a changing reality, HIV positive youth are speaking out, and this is what they are saying: “Deal with us.”
One sign of a growing public awareness of the problem is a study released last spring by the White House Office of National AIDS Policy entitled Youth and HIV/AIDS: An American Agenda. In what is perhaps the study’s most shocking finding, the researchers report that a full quarter of all new infections in the United States occur in people between the ages of 13 and 20 -- that’s two young people infected every hour of every day. To those policymakers who still doubt the need for explicit, effective prevention education for youth, the White House report gives final notice. But the finding is also a wake-up call to physicians, service providers and anyone else who works with youth: This growing legion of HIV positive adolescents is in dire need of medical care, and according to the report, we’re not giving it to them.
Who are these teenagers? Epidemiological data of AIDS cases offer some clues, but it’s a partial portrait at best, since the majority of teens with HIV will not develop AIDS until their twenties or thirties. According to the most recent count by the federal Centers for Disease Control and Prevention, nationwide there are 2,354 AIDS cases among young people ages 13 to 19 and, more telling, 18,955 cases among young adults 20 to 24. In a disturbingly familiar pattern that parallels the adult epidemic, a disproportionate 60 percent of AIDS cases among 13-to-24-year-olds are African-American or Hispanic. The White House report pinpoints street youth as being at greatest risk.
For teens on the street, life is hell: They are often runaways, undereducated, sexually and emotionally abused, moving in and out of foster homes, group homes, turning tricks or panhandling for money, shooting up to deaden the pain. Second chances are rare: All it takes is a single act of unprotected sex, one dirty needle, to contract the virus. And help isn’t forthcoming. Like the illiterate black teenage mother in Sapphire’s novel, Push, and the down-on-their-luck street kids in Jess Mowry’s best-seller Way Past Cool, these are children society has left to die.
Most who are infected don’t know it. “The biggest issue we face right now is how to tackle the disparity between the number of kids we think are infected and the number who are in care,” says Dr. Donna Futterman, a leading physician working with positive youth. Futterman is currently director of the Adolescent AIDS Program at Montefiore Medical Center in Bronx, New York, the first -- and still only one of a handful -- of clinics in the country that specialize in adolescents. Since 1987, the Montefiore program has worked with 120 patients, a tiny fraction of all HIV positive New York City teens. During Futterman’s two-year watch, the program has increased its efforts at finding positive youth and getting them treatment.
Futterman thinks all the attention on AIDS education has obscured the crisis of teens who are already infected. “There have been many battles about prevention,” Futterman says. “Can safer sex be taught in the schools? Can condoms be distributed? It’s a hot topic. But saying that kids actually have HIV and should be linked to care -- that has not been part of the agenda.”
“Prevention is addressed, but it’s as if HIV really doesn’t exist,” says Janet Shalwitz, executive director of San Francisco’s Health Initiatives for Youth, a nonprofit advocacy organization. “The reality of the disease is very distant.” And no wonder -- society’s expectations of young people today are hopelessly contradictory. Sometimes we’re intent on preserving the fiction of their “innocence,” with school boards nationwide overhauling AIDS curricula to insist on sexual abstinence as the only acceptable way to avoid HIV infection; other times we blame youth for a laundry list of so-called societal ills, from skyrocketing violence and drug abuse to welfare dependency and unwed pregnancy. The locus of such jarring hopes and fears, America’s youth often find their real needs get ignored.
Even when adults recognize that many teens today are living with the virus, the issue of HIV antibody testing can cause them to founder. If testing has been a flash point since the epidemic began -- with battles over mandatory testing of everyone from health care workers to newborns -- then teenagers represent the next round. The debate will leave scars. Already in New York and other cities, it is dividing youth advocates and service providers who have a long history of working together. All agree that HIV testing must be voluntary. The disagreement comes over making the test a regular procedure for adolescents. On the one side are those, like Futterman, who feel the urgency of getting unidentified positive teens into medical care, especially since early intervention with combination therapies may delay the onset of AIDS. On the other side are those who worry that in the rush to test, we may overlook the complexity of many young lives. Not every teen, they argue, is prepared to deal with an HIV diagnosis or take advantage of medical care.
Richard Haymes, a 43-year-old PWA who directs New York City’s Health Outreach to Teens (HOTT) program, witnesses this complexity up close in his day-to-day work with street youth. HOTT offers HIV testing to its clients, many of whom receive medical care from a van that roams the city, but Haymes emphasizes that HIV is often only one of multiple survival issues that these youth face.
The HOTT staff does not test anyone on the first visit. The program’s goal is to build trust between youth and staff before suggesting an HIV test, aiming to ensure that those who test positive return for medical care. “It would be criminal to test them, give them the results and just send them into the night,” Haymes says. “The notion that testing is a link to health care is false.” Even when treatment is accessible, he adds, it may not be possible or desirable until the other problems of street life are solved.
Take, for example, Angel Rivera*, an HIV positive 24-year-old who spent much of his teens on and off the street. “I would be here today and there tomorrow. Or I’d be trying to kill myself,” he says. “There was no follow-through with my treatment. I’d be taking my medication one day, and the next day I’d be out hustling.”
Haymes sees a lot of young people like Rivera. “What’s the point of knowing you’re positive if you can’t make use of the drugs?” he asks pointedly. “Where do you store your AZT when you’re homeless?”
This argument doesn’t wash with Futterman, though. “The test is not what decides if they have HIV or AIDS,” she says. “The virus already exists as a reality in their life. We’re here to deal with the problem, and we feel what we’re doing can help them.”
Luna Ortiz was tested for HIV when he was 14. He had become sick with flulike symptoms -- probably seroconversion illness -- shortly after his first sexual experience and was taken to the emergency room. There, Ortiz was given a battery of tests, including an HIV test, though none of the procedures were explained to him because the doctors assumed he was too young to understand. When the HIV test came back positive, he received no post-test counseling and no referral for medical services, an all-too-common experience of infected youth.
Ortiz, now 24, is a tall, handsome young man who sports a Tommy Hilfiger jersey and baggy jeans. As he tells his story over coffee in a Greenwich Village café, he stops several times to wave hello to passersby on this well-traveled thoroughfare of gay New York. Still, he had “no idea what HIV was. The doctor told me I had two years to live. So the first two years I was waiting for something to happen. And nothing happened.” He laughs. “I got over it by the third year.”
In 1989, Ortiz was referred to the Montefiore Adolescent AIDS Program through a gay youth agency that was shocked to find he was receiving no medical attention. Starting in about 1992, he says, the doctors at Montefiore began encouraging him to take AZT, the first-line therapy at the time. But despite the pressure to follow doctor’s orders, he was reluctant. “Because of the way the gay community and ACT UP were raising questions about AZT, I didn’t know what to do,” Ortiz recalls. “So I didn’t do it.”
Early this year, Ortiz discovered his T-cells had dropped to 80. His physician sat down with him, and after a long heart-to-heart, Ortiz agreed to start taking ddI, an AZT successor, as well as Bactrim for prevention of Pneumocystis carinii pneumonia (PCP), an often deadly opportunistic infection (OI). More recently, his doctor put Ortiz on AZT/ddI combination therapy. Ortiz says he was anxious about starting the AZT -- “I lost some T-cells thinking about it,” he jokes -- but he had heard that the protease inhibitors were promising and patients were required to have taken AZT to qualify for them. So he figured he would give AZT a try. But only four days after starting the combination therapy, Ortiz stopped. “I got really sick,” he says. “Now I’m just taking my little Bactrim.”
“I’m stuck,” Ortiz says, poking with his fork at the apple cake in front of him. “My HIV is becoming more of a reality to me. I used to think, ’Oh yeah, I’m HIV positive and I look good.’ But I don’t feel like that anymore.” He puts his fork down and sighs. “It’s because of those damn T-cells.”
Treating young people such as Luna Ortiz and Lee Kapshaw, physicians are operating in what Donna Futterman calls a “best guess” scenario. The reason? Researchers have neglected to study adolescents. This is partly because the epidemic among young people has been largely invisible, even to medical professionals. But scientists have also been loath to look at adolescents because of perceived difficulties in obtaining informed consent from minors and their parents or guardians. And like IV drug users, adolescents have historically been classified as “noncompliant,” or failing to follow through on prescribed therapy -- an assessment that may have more to do with their often unstable circumstances than with age.
The dearth of research makes treatment decisions -- what drug to prescribe, and when? at what dosage? which OIs to look out for? -- a daunting challenge. [See An Apple a Day? ] That’s why Futterman is excited that Montefiore is part of a new federal study that she hopes will at long last answer some of the basic research questions about teens and HIV. Launched in late 1994, the Adolescent Medicine HIV/AIDS Research Network (AMHARN) study is a five-year, ten-city look at the natural history, or development, of HIV infection in adolescents funded by the National Institutes of Health (NIH) and the Ryan White AIDS Care Act. Dr. Audrey Rogers, an epidemiologist at the NIH’s National Institute of Child Health and Human Development (NICHD) in Bethesda, Maryland, heads the project. “This population is crying out for studies. If we can give systematically collected information to clinicians, it will be tremendously helpful,” Rogers says. “It’s the intuition of most clinicians that HIV is no different in teens than in adults.”
This is not necessarily a bad intuition -- the teen’s immune system is fully developed by the time infection generally occurs -- but it’s formed in the absence of any solid research. Rogers hopes the AMHARN study will reveal what some of the differences between adolescents and adults might in fact be. At the top of the list: Differences in disease progression, the effects of hormonal changes associated with puberty, the interaction of other STDs with HIV and what normal T-cell counts and other surrogate markers look like in adolescents. The scenario is further complicated by the many dramatic physical and cognitive changes that regularly take place during adolescence.
The AMHARN study will also open the door to an emerging understanding of how AIDS drugs affect adolescents. Since youth have been either excluded from or underenrolled in clinical trials, few anti-HIV therapies on the market have been tested in their bodies. And though there are efforts afoot to increase representation of teenagers in drug trials, many experts like Rogers feel that’s putting the cart before the horse. "When you have the natural-history information, then clinical drug trials start to make sense,“ Rogers says. ”But we can’t see what these drugs are doing if we don’t have the ’background noise.’"
To date, AMHARN has enrolled only 63 young people between the ages of 12 and 19. Rogers concedes, “We’re not going to be able to say anything about disease progression unless we increase our numbers.” Yet the study admits only young people who are already in medical care. Since doctor’s visits are intimidating enough to many teens, the AMHARN researchers think the study -- with its sensitive procedures, such as genital or rectal exams -- shouldn’t be any young person’s first experience with health care. But given the paltry number of positive teens presently receiving treatment, this restriction presents a kind of Catch-22 to researchers. Rogers acknowledges that addi-tional funding for outreach would help -- “Though I don’t know where the money’s going to come from” -- but in the meantime, the NICHD will reexamine the protocol. “If we’re committed to the science,” she states, “then we have to find a way to deal with the enrollment problem.”
For Janet Shalwitz and others, the physiological questions that the AMHARN study seeks to answer are still just the tip of the iceberg. Says Shalwitz flatly: “Treatment itself -- or what happens in the office -- is only a tiny part of what we can contribute. Housing may be the first thing we can do for a young person. Drug treatment programs are ridiculously hard to find, and young people push the buttons of the staff, so they’re the first to get kicked out. The mental health system has never been there for youth.”
This need for support comes at a time when the nation’s social safety net is in pieces. The federal government has abandoned its welfare responsibilities to increasingly cash-strapped states. Millions of Americans languish without medical insurance, and the hope of national health care seems remote. The president proposes that the problems of America’s youth can be solved by curfews and school uniforms. For all its good intentions, the White House report on youth and AIDS skirts these tough issues but none of its life-saving recommendations has been implemented by the administration.
If Jennifer Jako has learned one thing from her HIV diagnosis, it’s that she needs empowerment as well as support. This intense, energetic 23-year-old from Portland, Oregon found out she was HIV positive in 1992. Nineteen at the time, a female heterosexual and not an IV drug user, Jako imagined she had little to worry about. When the test results came back positive, she recalls, “it was like a glass ball had dropped on concrete -- pieces of me were all over.”
Jako began seeing an HIV specialist, and within three weeks she was taking AZT. She never questioned if it was the right choice. “I was being given all sorts of information, a plethora of pamphlets and statistics,” she says. “But how could I take a class on HIV treatment issues when I was grieving for my future?”
Then she met a friend who told her about alternative therapies such as herbs, vitamins, homeopathic medicines, acupuncture and massage. “I knew immediately that was the right approach for me,” Jako says. After a month and a half on AZT, during which she was frequently nauseated, she stopped taking the drug. She began a holistic treatment regimen, including a support group and mental health counseling.
Jako still recalls the image that kept her going in that difficult first month after her HIV diagnosis: “I was looking for another young woman who was 19 years old and HIV positive and who was living her life fully and powerfully.” Today, there are a number of places Jennifer Jako might find that young woman. One is at Bay Area Youth Positives, a San Franciscobased, youth-run organization that offers peer support for HIV positive young people ages 15 to 26. Since opening its doors in 1994, Bay Positives has worked with some 200 young people, among them Lee Kapshaw, now a staff member.
As groups like Bay Positives take root, as more HIV positive young people play a role in their own treatment and as more research is conducted, service providers like Janet Shalwitz see some hope in an often bleak landscape. It is perhaps just one of the many dazzling contradictions of this epidemic. “HIV positive youth do incredible flips with their lives and turn tragedy into power. We’ve seen young people who would probably be on the streets forever, and now they’re leading organizations, and they’re speaking out at huge conferences, and they’re solving problems, and they’re on the Internet talking to other young people across the country. They’re doing amazing things. Where else would this happen?”
* These names have been changed.
Research assistance: Kate Barnhart