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Another major barrier for youth has been the lack of ability to pay for treatment and care. In many cases, medications alone can cost as much as $3,000 a month.36 As the payer of last resort, the Ryan White HIV/AIDS Program provides resources for youth who have no other means of accessing care.

Beyond the practical issues that prohibit engagement in care, many young people share a misconception that they are not at risk for HIV infection. Many of today’s youth have no direct memory of the first wave of AIDS deaths during the 1980s, and most have not been taught about the disease in school.38 If they have heard of HIV, they often have a sense of complacency about its impact. Many mistakenly believe that HIV/AIDS can be “cured” by a pill and that it’s no big deal, or that HIV is easily treatable without understanding that medication adherence requires a lifelong commitment with possible side effects.39

Stigma may be the single biggest barrier, keeping so many of them from getting tested and connecting with the care and services they so desperately need. Even with individual and community education about what causes HIV, stigma about the disease is very real for young men and women who are infected. Typical adolescent development already features periods of extreme self-consciousness and self-criticism; even older teens still may struggle with feelings of inferiority and inadequacy.40 In other words, young people may internalize HIV stigma more, and that can cause the feelings of shame surrounding HIV to be unbelievably intense for them.

Photo of young African-American man talking to health care worker wearing gloves.

Ryan White HIV/AIDS Program staff are trained to provide confidential care to protect their patients' privacy.

Providing Care for Youth in Detroit

Darius was 17 when he got tested in an Atlanta clinic as a walk-in patient. “I only did it because I was feeling really sick, and I knew something wasn’t right.” He says he was probably infected years before through an older partner who has since died from AIDS. He had put off being tested because he knew that even if he was infected, he was not ready to deal with coming out to his friends and family. “For me, it meant that I had to say out loud that I was gay. I wasn’t ready to come out,” he says. And when he did tell his family about his sexual orientation and his status, his father immediately put him out of the house to live on the streets.

“Once I knew my status, things got really rough for me. I was ashamed, and I was sick,” he says. “It was another six months before I went back to find out the next steps and what they could do for me. I had AIDS by the time I came back, but I didn’t have any money to get help.” He was eventually linked to a Ryan White HIV/AIDS Program grantee at Grady Hospital through outreach workers that focus on making connections with youth living on the streets.

“They told me that if I ever decided to stop taking the medications, I could die. So I take them,” Darius says. “There are people that check in on me from the clinic, and I have even found a place to live and work,” he adds. Still, the shame and stigma have not gone away. “My family still doesn’t want me to come around, and that hurts.” Fortunately, Darius says he has found a real community and friends through his work as a peer educator in the Grady program.

“I would have put off [getting care] even longer, but I wasn’t sure that I could survive if I didn’t get help.”

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