Positively speaking at the International AIDS Conference

Yesterday, the 2nd day at the International AIDS Conference in Vienna, I went to a session on disclosure, which is when someone reveals their HIV status to someone else. We also discussed the problems adolescents may face using anti-retroviral medicines.

Several case studies were presented. What I found most striking was the difference in life experience between adolescents who had acquired HIV through mother to child transmission either while in utero, during birth or breastfeeding compared to those who had acquired HIV as adolescents, usually through sex.

Many adolescents who acquired HIV as infants have been on anti-retroviral medicines all, or most of their life. They  have known no other reality than living with HIV, often with the stigma attached. They usually have at least one parent – and often siblings – also living with HIV, and have experienced life as an “outsider”.

For them adolescence, and the physical changes to their bodies, can represent a new start, where they become “insiders” in society. Their sexual identity is part of this, and for many, becoming sexually active is a pressure and desire fraught with confusion and worry over negotiating safe sex, while not necessarily wanting to disclose their HIV status to a new partner.

In contrast, those who acquire HIV as adolescents are often not on ART so adhering to drugs is not an issue for them; they haven’t grown up with HIV as a part of their identity, and the issues of disclosure are around deciding who to disclose to, rather than having a parent disclosing their HIV status to them, and the worry of sexual initiation has generally been dealt with.

I met a 19-yearl old girl who I will call Jane, at the end of the session who acquired HIV while still in her mother’s womb or soon after birth. Jane said that most of her friends don’t know that she is living with HIV. If she does tell people, they immediately assume because of her age, that she has acquired HIV through sexual transmission. Not wanting people to assume that, she has a dilemma:  if she tells people that she acquired HIV through her mother, she is disclosing not only her status, but also her mother’s.

On several occasions people have asked her if she is angry with her mother, or commented that her mother must feel very guilty, which Jane finds very offensive. On the other hand, she finds the fact that HIV is an sexually transmitted infections hard to live with, as she may have never even have had sex.

Luckily for Jane, her mother is very involved in HIV work where she lives. Had that not been the case, she would have had no one to go to for advice about sex, reproductive health, and her choices as a young woman living with HIV. She has fallen between the paediatric services, where she was cared for as a child, but which provides no sex education, and the adult services, where staff assume that sexual and reproductive health issues has been covered under the paediatric services.

The current generation of adolescents living with HIV are not always receiving appropriate care and support. They often don’t have a loud voice, but do face real challenges, fears, and hopes and aspirations. Many of the issues they experience are common to all adolescents, but many are also specific to young people living with HIV and addressing them requires a new and dynamic approach.

Find out more about how our health and HIV work to improve children’s lives

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