International Youth Day: Lara’s story

To coincide with International Youth Day, Key Correspondent Elena Obieta gives a very personal account of some of the challenges facing young people living with HIV.

When I decided to attend the special meeting on adolescents and HIV during the last International AIDS Conference in Kuala Lumpur, I was looking for something other than scientific evidence or new drugs for HIV treatment in this special population. I had already discovered that I had been changed forever by my own adolescent patients.

As a physician who works with adults I wasn’t initially used to treating young people living with HIV. Lara, pink haired and with lots of piercings, was my eldest son’s age, 18, when she was sent to my office for the first time - I work in a public hospital in a poor suburban area in Argentina. She had acquired HIV perinatally and her little sister, 15, is also HIV positive. Lara’s mother died of AIDS when she was six years old. Both sisters had been living with different grandparents and aunts and uncles; changing homes, schools and doctors throughout their entire lives. I can’t forget my feelings during that first visit when I met Lara. I did not know how to start or what to start with.

Lara was not on antiretroviral treatment (ART) and said that she did not want to take any pills for a disease she was not to be blamed for. Her CD4 cell count, in other words her defense system, was very low. During that first visit we talked about literature and boyfriends. I didn’t want her to feel pressured towards treatment which would mean an inevitable loss to follow-up.

Unmet treatment hurdles

Despite so many efforts over the last three decades, the major unmet hurdle remains getting treatment to all those in need including adolescents for whom structural barriers apply regardless of sex, religion or citizenship. Unfortunately, there is little recognition of the challenges that young people living with HIV face as they take the road from complete dependence on care givers and paediatric health services to adult HIV care systems, which should emphasize self-reliance and individual accountability for adherence.

There is currently insufficient data to accurately determine the number of adolescents who need and receive ART. The best available estimate is that about 2.2 million (6.5%) of the 34 million people living with HIV globally in 2011 were 10–19 years old. Adolescents in some countries with a high burden of HIV infection have been reported to have a very high HIV prevalence.

Most adolescents acquired HIV perinatally, either when their mothers were pregnant, during labour or breastfeeding. But now they are growing up and struggling into adult life, with all that that means.

Treating adolescents living with HIV

Special issues come into play when treating young people and, after listening to two lovely Thai girls during the conference, I realised that our teenagers living with HIV share the same dreams globally, whether they were born in Latin America, Asia or Africa. They face the same difficulties and fears. First of all disclosure of their status. Who should tell them? And when? Most adolescents for example would rather learn that they are living with HIV through a family member rather than hear it from a health care giver.

Second, even after thirty years of the disease’s history, the fear of stigma and discrimination is still there. Young people are afraid of sharing their status with friends and school mates and this can cause issues with adherence: Why are you taking pills? Are you sick? Will my friend´s family let me stay/sleep over/play if they know that I am HIV positive?

The transition from paediatric services to being seen by a physician working with adults sounds scary to many teenagers. Adult services can be perceived as intimidating, cold and impersonal, and this failed transition can lead to a loss of follow up, poor adherence and treatment failure. There’s a long way to go still and both paediatricians and GPs should try to find the right way forward, such as through special services for adolescents, peer groups, and decentralised health care facilities. Otherwise our girls and boys living with HIV will be lost in the crowd.

Last, but not least, sexuality remains a sticking point. It seems that health care givers still have much to learn in order to know how to talk about it with adolescents.

Today Lara is finally on antiretroviral treatment, she is engaged and has gone back to high school. Last week she introduced me to her boyfriend Fernando, and I saw her smile. They are thinking about their future.