Perinatally Infected Teens with HIV Plan for the Future

When asked if he ever gets tired of taking his daily medicine for HIV, T* considers the question and responds, "Yes, but then I think about my future."

T was perinatally infected with HIV. He was born in 1991, just as new anti-retroviral drugs were transforming the medical treatment of HIV/AIDS patients. Children born with HIV began to survive and, for the first time, had to learn how to grow up with the disease.

A handsome and polite young man, T will be 17 years old this spring. The high-school junior likes math and auto-body class. He is a sprinter on both the winter and spring track teams and is taking driver's education this semester. He enjoys listening to R&B and hip-hop music and watching both scary and funny movies.

Most of the time, T is too busy to think about his illness. "I only think about it when I take my medicine," he says.

Ruth Martin, MSW, MPA, director of social work for the Pediatric and Adolescent HIV Care Team (PAHCT) at Comer Children's Hospital, says, "In the early 90s, we took care of children with a terminal illness, but now we are teaching them how to manage a chronic disease. They are being encouraged to finish high school, go to college and think about careers, marriage or having their own family someday."

Providing primary and subspecialty medical care, psychosocial support and social work medical case management to HIV-infected or -exposed infants, children and teenagers is the mission of PAHCT. The team of highly trained doctors, nurses and social workers offers HIV evaluation, diagnosis, treatment and support services to more than 100 pediatric patients each year.

The goal of therapy for patients is to have the virus undetectable in their blood. But there are challenges on many levels. Twenty-five years ago, the treatment regimens were not optimal. Doctors found that the virus developed a resistance to some of the drugs. And the pill burden, as high as 10 or 12 pills, taken two or three times a day, resulted in "treatment fatigue" in many patients. The long-term effects of taking anti-retroviral drugs for many years are not yet known.

Infectious diseases specialist John Marcinak, MD, associate professor of pediatrics and the medical director of PAHCT, has a hopeful view of future outcomes. "In the past four years, new combination medications with different mechanisms of action have given us much to be optimistic about," he says. "In the last year, three completely new medications have been approved for the treatment of HIV. The life span and quality of life for these young people continues to improve as new drugs are developed."

When T was young, he took the medicine, Ritonavir, twice a day. This liquid medicine, with a particularly awful kerosene-like taste, caused T to vomit regularly. In the past year, he started taking the drug, Atripla, the first one-pill, once-daily complete regimen of different types of medications. The three drugs in Atripla work to slow down the disease by blocking transcriptase, a protein that HIV needs to replicate itself.

For T, taking care of his medical needs is not his biggest concern. Like other teenagers living with HIV, issues of privacy and disclosure weigh heavily on his mind.

"I am still working on how I might tell a serious girlfriend someday," he says. "I'll ask her to stay calm and not yell. And I hope she will love me enough to stay with me."

Linda Walsh, NP, a nurse practitioner on the care team says she finds that teens with HIV are strong and courageous kids. "They have a lot to deal with because HIV is a physical, mental and spiritual diagnosis."

In the near future there may not be any more children growing up with the disease. Advances in the testing and medical care of HIV positive pregnant women have lowered transmission rates to infants to less than two percent.
Even so, the battle against HIV/AIDS in the adolescent population will continue.
Pediatric infectious diseases specialists agree they must stay focused on teenagers who could contract HIV through risky behaviors.

"Unfortunately HIV is still alive and well in the United States," says Linda Walsh. "Today's teens have a choice, yet they are still contracting the disease through unprotected sexual activity and drug use. "

PAHCT is committed to reducing the transmission of HIV among at-risk adolescents in the Chicago area through its community-based HIV prevention program in local schools. (See box). The team makes 20 to 30 visits to some middle and high schools each year.

When HIV/AIDS is discussed at T's school, he rarely speaks up. When he does, his classmates ask him if he has HIV and how he knows so much about it. He has his response ready.

"I tell them that I pay attention in health class and that they should get the facts and get educated, too."

* To protect the patient's privacy, an initial is used.

Community-Based HIV Prevention

PAHCT is committed to reducing the transmission of HIV among at-risk adolescents in the Chicago area. Working closely with schools and youth groups in Chicago's south side, the team presents HIV prevention workshops directed toward educating at-risk youths. This community-based intervention program aims to:

• Increase awareness of risk factors for HIV/AIDS and knowledge of prevention strategies,
• Motivate youth to reduce high risk behaviors and test to know HIV status
• Decrease the perceived or real barriers to HIV testing
• Provide links to HIV services to ensure that those who test positive follow up for referral and treatment

PAHCT is also developing HIV prevention workshops for public school personnel who have daily contact and influence with the student population. These include teachers, social workers, counselors, support staff and student leaders who will train to become peer educators. PAHCT will provide these future HIV-educators with the necessary tools to regularly talk to youth about HIV.