Teen Voices of AIDS

"Too many young people are frightened to talk about their own HIV," says Adam Tenner, executive director of Metro TeenAIDS. Here, Lydia Robinson, a former Metro TeenAIDS peer educator, lights a candle at a vigil protesting cuts in funding for local groups serving adolescents. (Metro Teenaids)

"They have served as teachers to us all," the longtime clinicians wrote.

With new infections occurring with increasing frequency among 13- to 19-year-olds, thousands of adolescents across the country are receiving diagnoses every year. The shattering results must be followed by compassion and very tailored conversation, according to the book, for every aspect of HIV can be different in these cases, from the virus's progress in the body to the services available to a suffering teenager.

"Managing a life-threatening and socially stigmatized illness is emotionally difficult and challenging for adults," one of the contributing authors noted. "It is even more difficult for adolescents, who are more vulnerable and less prepared to deal with a health crisis of this magnitude, much less deal with it alone."

The book, available online and in stores, addresses the host of medical, treatment, disclosure and support issues. Beyond teens, it's aimed at health-care providers, who often don't listen well to adolescents; at school leaders, who in many systems still provide minimal education on sexually transmitted diseases; and, of course, at parents. Over the years, both Lyon and D'Angelo have comforted teens who've been kicked out of their homes after telling their families.

"Sometimes," Lyon said recently, remembering past heartaches, "HIV is not the biggest problem in their lives at the time we see them."

"These patients have defined for me what it means to be a good provider," D'Angelo said.

She has been at Children's since 1985, he since 1982. As Washington became an epicenter of the virus during that decade, their hospital became a major nexus for HIV and AIDS care. Its Burgess Clinic, founded by D'Angelo and named for an internist who was among the first local doctors to tend to infected youth, is where they are seen today. With around 160 cases, divided mainly between the District and Maryland suburbs, the clinic is one of the largest such programs nationally.

Each still thinks about early cases and draws on lessons learned in caring for them. For Lyon, there was the girl whose mother had been prostituting her on the streets. For D'Angelo, there was the boy who'd received a contaminated blood transfusion during surgery. They were insightful, courageous -- the boy until he died of AIDS and the girl even now. She is a rarity from those years, married and with three children of her own. None is infected.

The arc of the disease is reflected in Children's current patients. Three-fifths were born to infected mothers, a proportion that is waning because of the availability of medications to block any viral transmission during and after delivery. The remainder, both male and female, put themselves at risk through sexual behavior. And the makeup of that group is shifting: Girls have gotten smarter, and safer, whereas HIV among gay males is rising dramatically.

"There's a whole new cohort that has to be educated," Lyon acknowledged.

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