Growing Old with HIV: Transitioning from Pediatric to Adult Care

For years, children living with HIV/AIDS were left out in the cold by conventional treatment methods. But as treatment methods improve, more and more children are growing up with HIV, and they face unique challenges and obstacles. On Monday, the Elizabeth Glaser Pediatric AIDS Foundation hosted a panel discussion of adolescent HIV treatment needs, entitled ”Addressing the Psychosocial Needs of Transitioning Adolescents Living with HIV Since Birth: A Global Perspective.”

Organized by Foundation Ambassador Cristina Pena, the panel featured another Foundation Ambassador, Jamie Gentille. Other members of the panel included Princess Nuru Nabbumba Kisitu of Uganda, Melissa Sharer of AIDSTAR-One, Rena Greifinger of the One Love Project, Alden Nouga of Pathfinder International, Joanna Busza of the London School of Hygiene & Tropical Medicine, and Dr. Susan Kasedde of UNICEF.

Foundation CEO and President Chip Lyons opened the panel. He thanked the Foundation Ambassadors, who he called heroes “by virtue of their fortitude and strength,” and commended Cristina for her efforts to put together the panel. He talked about how vitally important these discussions are. “We’re missing data on young people with HIV,” he said. “It’s difficult to provide the tools that caregivers require.” He added that though there are funding concerns, “a question mark is not a stop sign.”

Jamie Gentille spoke first, and told her story of being infected with HIV during a blood transfusion in 1982. She talked about how after she was diagnosed with HIV at age 8 – a virtual death sentence at the time – her family spoiled her with vacations and gifts to make the time she had left as much fun as possible. But after the National Institutes of Health (NIH) approved a drug protocol for children living with HIV in the late 1980s, Jamie said that “the window of hope got a little bit bigger.” Today, she is 32 years old, and she said, “my sights are set for 80.” Jamie talked about how the needs of youth living with HIV are fairly unexplored. “20 to 30 years ago, we would have never thought about growing old with HIV.”

Princess Nuru Nabbumba Kisitu spoke next. She talked about how she was the last to know her HIV status, and nearly died in 2006.  But when she first tested positive, she laughed at the counselor who gave her the news – “How can you say I have HIV?!” She said that when she tested positive a second time, she was “shattered” by the news. The psychosocial support she received in Uganda was very important to Princess – it was key to her dealing with the fear and tension she felt about her HIV status, and the side effects of her medication. Princess also discussed the role of stigma and the challenges of disclosure, and shared a story of being shamed at a clinic and told that if she returned to the clinic pregnant, she would be cut off from her medication and left to die.

The issues of stigma and the fears of disclosure were a major subject of discussion for the panelists. Melissa Sharer discussed how both perinatally- and behaviorally-infected young people are forced to battle not only HIV, but also the stigma and shame surrounding the disease. Many are also coping with grief – the loss of parents or caregivers from AIDS – and they need providers with the training necessary to work with their needs. Rena Greifinger continued the discussion, asking the audience to “think about your own adolescence” and add to those challenges those involved in living with HIV – medications, losing loved ones, isolation and depression, fears of disclosure, possible weak links to effective care and support, and the pain of stigma that can arise from schools, religious organizations, and even clinics designed for treating people living with HIV. Rena said that young people living with HIV need “holistic, intentional, and sustainable” psychosocial support. “We need to treat adolescents as the experts that they are,” she said.

When it comes to discussing sexual and reproductive health, all of the panelists reported that youth living with HIV have the same needs and preferences as other young people. Joanna Busza provided research from Tanzania – where youth make up 20% of those living with HIV – that showed a major disconnect between what young people living with HIV report that they need from their treatment and what they actually receive. Reluctance to discuss sexuality, family prohibitions on disclosure. and unclear expectations are putting young people at risk, she said. Alden Nouga responded to Joanna’s research, and added that Pathfinder’s 1,500 healthcare providers in Tanzania are receiving new training to help them meet the needs of youth living with HIV more effectively. And Dr. Susan Kassede provided much-needed data on the numbers of youth living with HIV – in 2010, 2.2 million adolescents ages 10-19 were living with HIV, and 65% of those youth were girls. She added that program officers, policy makers, and advocates must work together seamlessly to fill gaps and meet the needs of youth, including diagnosis, ART initiation and support, and disclosure support.

Thanks to everyone who participated in this important discussion. Working together, we can meet the needs of youth living with HIV and make growing old with HIV a probability, not a possibility.