Strike a Chord: New York City Program Strives to Put End to Adolescent HIV/AIDS Epidemic Through Peer Support

The "Adolescent Program" building is much less a building, than it is a small house, tucked quietly on a side road by Montefiore Medical Center in the Bronx. 

Discretion is so key, that "AIDS" isn't even on the sign. Inside, colorful paintings with inspirational tag lines, like “You’re not alone," are flanked by medical brochures and pamphlets. One poster sticks out above the rest. It reads, "Never let the virus define you. You define it." Those are the words to live by here at Montefiore's Adolescent AIDS Program. And each new patient will mostly like be greeted like this.

"'I'm not sorry for you. I'm here to work for you. I'm here to help you, so welcome to the Adolescent Program. How can I help you?'  It's not 'Welcome to the Adolescent Program. I feel so sorry that you're here.'"

Jawindy Swengbe is the program's linkage-to-care coordinator. It's his job to break down every single barrier in a patient's life before he or she can begin care. Those barriers include a lack of insurance, childcare, familial support, even a home. He recalls one patient who especially touched him.

"He was really young. He lives in a group home. He has a daughter. It seems like he's a little conflicted if he doesn't know if he's straight, or if he doesn't know if he's gay," Swengbe said. "It's like, there's just so much going on in his life, that HIV is not a priority."

Swengbe's only 22 years old, as are many of the patients he helps. The Adolescent AIDS Program has served about 600 people, between the ages of 13 and 24, since it launched in 1989. And at any one time, outreach workers like Swengbe see 120 patients, with about 40 more walking through the door every year. It's numbers like these that concern the medical industry, especially doctors like Donna Futterman, who runs the program.

"In fact, in the United States, they say that every hour of every day, a new young person is infected with HIV," she said.

She says adolescents are the only group in which infection rates continue to rise, whereas those in adults have leveled off, since HIV/AIDS was first documented about 30 years ago. And there are plenty of reasons why. One is a basic lack of knowledge of the virus; another is a lack of education about safe sex. But Futterman says a lot of it boils down to this:

"Young people have this sense of invincibility that's really quite powerful and leads them to think that they're not going to get infected, they're not going to get sick."

So even those who're at the highest-risk of contracting HIV may forgo the proper, necessary treatment. According to the CDC, this risk is especially elevated for young gay and bisexual men of color, who have sex with other men. Which Futterman says can make taking the first steps to getting help that much more difficult. Among the many challenges of reaching out to adolescents, is they're afraid to openly talk about their sexual orientation or their HIV status.

"It's almost impossible to treat HIV without having the people around you know why you're taking a pill every day, so if young people are living with families that they haven't disclosed their HIV to, it makes it difficult for them to get the proper treatment," she said.

These types of barriers are the reason why Dr. Futterman believes so strongly in the Adolescent AIDS program. She says finding the right support is the pinnacle to fighting HIV/AIDS. And that's what they strive to do at Montefiore -- provide an environment unlike any other.

"And it turns out that having doctors, nurses and social workers who really like teenagers, want to help them specifically, and creating a program where they can get peer support from each other, are crucial to the success of them getting the care that they need."

Outreach workers first help young patients come to terms and cope with the disease -- in a language they understand. Then they find them the proper medication and teach them to set up a habit of taking a pill every day. They also prepare them for the changes to come, like confronting the possible stigma in school and at home. But most importantly, the team at Montefiore tries to remind their patients that life goes on.

"People can live with it, normal lives, healthy lives, for the rest of their lives."

Justin Toro is in his late-20s, and he now works as the program's outreach coordinator. He was diagnosed with HIV eight years ago, and remembers the day like it was yesterday.

"I was happy, I was mad, I was sad, I was angry, I cried, I laughed -- because you really feel like, 'Wow this is a turning point.' But then, having more education, working with my provider, working with the social worker that I had, really pushed me and really expanded my knowledge to know that I don't have to die," Toro said. "If I take care of myself and take charge of my HIV, then I'll actually be able to overcome this disease."

Toro is an example of what programs like the one at Montefiore can accomplish. The goal is to make sure the world knows there's always more that can be done to end HIV/AIDS -- something Futterman, Swengbe and Toro all believe is a completely avoidable disease.