HE looked like any other 19-year-old. He wore baggy painter's pants, high-top sneakers with the neon laces undone and an oversize sweatshirt. But when he kicked up the sand on the beach one recent morning, he was nervous and worried. He was constantly looking over his shoulder to make sure he was talking in confidence.
John, who became infected with the human immunodeficiency virus through the blood supply more than six years ago, said:
"I'd be so embarrassed if everyone knew I was HIV positive. Now when I go out drinking with the guys, they'll ask for a sip of what I'm having. They wouldn't do that any more if they knew about my disease. They'd treat me differently."
John used to feel sorry for himself, he said, but now he tries to care more about everything and everyone, especially his widowed mother, who finds it difficult to deal with her son's illness.
HIV affects whole families, and when it develops in adolescents, it can also affect and infect their sexual partners. John said that initially he was so angry about having the disease that he would have sex and not use protection, simply because he "didn't care."
An epidemiologist at the Federal Centers for Disease Control, Dr. Nathan Shaffer, said:
"The number of cases of HIV infection among teen-agers 13 to 19 look real small, and this group looks like they are not to be reckoned with. But that's because the infection manifests itself several years later, when they're in their 20's. So we're going to have to target our educational efforts accordingly."
On Long Island, 1 percent, or 25 of the people testing positive for HIV infection from 1988 to 1989 were from 10 to 19. Twenty-four percent, or 680, were from 20 to 29, many of them probably infected in their teen-age years.
Yet health officials say Long Island does not have enough efforts directed toward helping this critical age group where HIV infection so often first takes hold. The officials say that existing counseling, testing and treatment programs fail to address the adolescents' social, psychological and biological needs and that there are not enough educational opportunities to learn about the risks.
A public-health nurse in Suffolk County who insisted on confidentiality said, "Adolescents just fall through the cracks."
But simply providing information about HIV-AIDS, although effective, is not enough to stem the foreseeable epidemic of HIV within this group, say health professionals. "I think," the nurse said, "that there are many adolescents at risk that we haven't identified, simply because we can't handle it."
'I Got Blown Away'
The chief of allergy and immunology in pediatrics at North Shore University Hospital in Manhasset, Dr. Savita Pahwa, said, "I think our awareness is just coming. Doctors out there in private practice are not used to thinking that a person as young as an adolescent can have AIDS. The first time I saw a teen-ager who was HIV positive, I got blown away. After I saw her, I couldn't help but think of her all the time."
A 16-year-old from Suffolk, whose mother insisted that the girl's name not be used, said in an interview thatshe knew eight months before her doctors that she was HIV positive.
"I knew I had had several blood transfusions" for a medical condition, "and all of a sudden I couldn't breathe," the girl recalled. "I couldn't walk around, I was constantly getting candida. I put it together, but the doctors didn't believe me. I don't think I should have been the one to figure it out first."
What makes it even more difficult for physicians to recognize that their adolescent patients may be infected is that there is very little known about the natural history of HIV in teen-agers.
The chief of the pediatrics-infectious diseases section at the National Cancer Institute in Bethesda, Md., Dr. Philip Pizzo, said it was not known whether hormonal developments in adolescence affected the disease or whether adolescents' responses to therapy were different from adult or pediatric patients.
But researchers are beginning to understand the incubation period of the disease in adolescents.
An associate professor of medicine at the University of Pittsburgh School of Medicine, Dr. Margaret Ragni, has been following 80 patients infected with HIV through the blood supply in the early 80's. She found that in those who were young when they were infected, the disease took longer to incubate and manifest itself.
But if adolescents have a longer disease-free survival time than adults with HIV, then special efforts are going to have to be made for extra support, say health professionals.
"If these kids' lives are extended, then we're going to have to help them have connections both socially and vocationally," a pediatric social worker at North Shore, Judy Aiges, said. "We're going to have to help them live with AIDS, not die from it."
In general, an adolescent's reaction to AIDS is like any other person's reaction to a fatal illness, Ms. Aiges. First, they feel shock, guilt and then denial. But perhaps their reactions are intensified, Ms. Aiges said, because in adolescence it is characteristic for teen-agers to feel omnipotent and that they will live forever. When they contract AIDS, those feelings are threatened.
But if anything threatens a teen-ager most, she added, it is the fear of rejection and ostracism.
An 18-year-old from Nassau County who has HIV described listening to his classmates talk about AIDS. "They talked about sending everyone with AIDS to an AIDS island and turning it into something like a Club Med for those of us who are HIV positive," the youth said. "I just listened. But that night I laid awake for a long time and wondered what would happen if I told them that I was infected."
Another teen-ager said that she had told her best friend that she had HIV and that the friend had told her father. "Now he won't let me see my friend any more," she said. "I still hurt and I'm going to think about it for a long time before I tell anyone else about being infected."
Problem of Sexuality
An attending psychiatrist at Long Island Jewish, Dr. James Gorden, said sexuality poses a difficult problem.
"As they get into dating, they're going to be faced with some hard issues," Dr. Gorden said. "Do they tell about their infection, and when do they tell about it? And what will happen when they do tell their secret? Will any date stay interested once they know?"
John recalled that he eventually found a friend he felt he could trust and told her that he had HIV, but that their relationship did not change. He said that he was lucky and that they continued to have sex using condoms.
The coordinator of the pediatric HIV psychosocial-support group at the National Cancer Institute, Lori Wiener, said: "Adolescence in and of itself is a time of tremendous physical, psychological and emotional development. It's also a time for separation, for adolescents to develop their own identity and person in their own right. Yet, when they become HIV infected, they find themselves dependent on their parents and on the medical community, when they should be autonomous."
Some adolescents with HIV give up when they learn they are infected. Many forget about finishing school and making career plans. John said he did that for a while.
Others have planned their whole futures and refuse to think about their disease.
"With proper support," Dr. Wiener said, "HIV-positive adolescents will have tremendous resiliency and strength. We just have to help them."
But health professionals also have to counsel adolescents more rigorously on preventing HIV, and if they are infected, how to prevent transmission, said Dr. Vincent Bonagura, chief of allergy and immunology at Schneider Children's Hospital in New Hyde Park.
"After all," Dr. Bonagura said, "if we are going to stem the tide of HIV infection in the heterosexual population, it makes sense to begin with teen-agers."
'Taking False Comfort'
Unprotected sex is a major risk factor for transmission. Dr. Georgia Yesmont, a psychologist at the Apple Drug treatment center in Brentwood, who recently conducted a survey at a college in Nassau, said: "While the students are waiting longer to engage in sex with their partners, they're not decreasing, nor are they avoiding sexual encounters. And they appear to be taking false comfort in their romantic attachments and are not using condoms at all like they should."
Forty-two percent of the 253 students surveyed classes with a questionnaire said they used condoms 75 to 100 percent of the time. When asked about their knowledge about HIV, 77 percent answered 14 of 18 questions correctly.
Dr. Yesmont said that many students said they had received their information about AIDS from their high school courses and that the finding pointed to shortcomings in their educations.
'We Don't Have the Person Power'
Although the State Education Department mandates AIDS instruction in elementary and secondary health-education programs, the director of school health at the department, Arlene Sheffield, said:
"We don't have the person power to observe all the programs. There are over 700 school districts spread over 4,000 buildings. It's each school's prerogative to decide on the curriculum they're going to follow. It's not unlike teaching other subjects such as science or math."
Carol Daub, an AIDS educational regional coordinator from the department, said:
"I know that some of the school districts are attempting a more comprehensive approach to health issues, while some are just trying to find an extra 20 minutes per day to deal with HIV education. What can we do?"
'We Can't Live on Love Alone'
In the fall, the Nassau-Suffolk Health Systems Agency will conduct an educational conference for all Nassau school superintendents "to raise their consciousness about HIV and to try to help educators talk more comfortably about condom use and abstinence," said Dr. Renee Pekmezaris, acting executive director of the agency.
She said that she would like to offer the program to Suffolk superintendents, but that Suffolk cut the agency out of its budget. "We can't live on love alone," she said.
The associate health commissioner in Suffolk, Oliver Shepers, said: "These are tough times all over, and there are tough choices to be made. We've not been able to continue all our programs and services. Right now we're just trying to meet the responsibilities we have to the people that our coming through our doors today."
AIDS Resource Network
But this isn't the first time that Suffolk County has not taken part in an AIDS prevention program.
In 1989, the AIDS Institute of the State Health Department awarded $150,000 to Nassau to set up an AIDS Adolescent Resource Network. The money was for a health educator, peer counseling and training for social-service agencies to work with high-risk teen-agers.
A spokeswoman at the institute, Karen Savicki, said: "We don't have the level of resources that we need to fund the demand for services. So when Nassau and Suffolk Counties both applied for the grant, only one of them received it."
Mr. Shepers conceded that the county had "inadequate resources to meet our existing needs, the county has been trying to do their fair share."
In 1990 the Office of Health Education made 177 AIDS presentations to 4,000 participants of all ages and distributed 23,000 pieces of literature on AIDS.