The HIV epidemic: a glass half empty?

Now I’ve had time to reflect on what I heard at the International AIDS Conference, held in Vancouver last month, I have a glass half empty feeling.

Not to say there wasn’t good news: people living with HIV have a growing life expectancy; they are starting treatment as soon as possible; and there have been advances in life-saving treatments for HIV and Hepatitis C co-infection. But the bad news, as usual, has to do with key populations affected by HIV, particularly adolescents.

There are currently an estimated 2.1 million adolescents (aged 10-19) living with HIV worldwide.

Defining adolescence can be tricky, complicating statistical analysis. But let us think about those children who were either exposed to HIV during pregnancy or breast feeding, or those under 24 years that because they belong to so called key populations are at most risk of acquiring HIV.

Adolescents living with HIV

During a special session at the conference, there was discussion about the differences between children infected perinatally with HIV and those who acquired the virus later in life. It is an issue that I believe needs urgent attention.

First of all, perinatally exposed adolescents might have experienced one or both parents’ death, likely experiencing stigma from their own schoolmates and teachers as a result of the household illness.

Disclosure of their status is still controversial and difficult, with no ‘one size fits all’ answer. When, who and how should tell our children that they are living with HIV?

According to Dr Kapetanovic, from the National Institute of Mental Health of the USA, disclosure is a process rather than an event. And it is critical to view mental health of young people living with HIV in the context of age, development and clinical milestones.

In other words, disclosure should be aged appropriate, match emotional and development level and consider relevant family factors. (Lesch at al. AIDS Care 2007)

Acquiring HIV in adolesence

Addressing issues related to young people who acquired HIV during adolescence (I simply cannot write “behaviourally infected” as they were called during the conference), they might have a particularly difficult time trying to cope with an HIV positive test, and without support, retention into care will not occur. Furthermore, for young key populations who have to deal with stigma, criminalisation, gender identity or negotiating sex for education, accessing sexual and reproductive health care may not always be a viable option, when it should be there, for granted, as a human right.

According to the World Health Organization, youth and adolescents have become increasingly vulnerable to HIV infection. In 2012 over a third of new HIV infections occurred in children and young adults aged between 10 and 24 globally, and while the overall AIDS-related death rate fell by 30 per cent, the corresponding number for our adolescents and young adults increased by 50 per cent.

This glass half empty feeling comes from all the factors that are still there contributing to the higher mortality of adolescents: lack of awareness of their HIV status; diminished retention in care; lack of adherence to medication; poverty and poor education; and of course the old ‘favourite’ stigma and discrimination.

Pursuing hopes and dreams

Adolescence – the gateway from childhood through adulthood – can be challenging at the best of times, let alone for those young people who are also living with HIV. We should be doing all we can to make it as smooth as possible, providing love and care to ensure that living with HIV does not prevent young people from pursuing their hopes and dreams.

After the conference I went on holiday for a few days in Miami, where I met up with a friend – Fernando Fiore, a well known TV presenter. Still feeling a bit ‘glass half empty’ from mulling over the issues discussed at the conference, it was good to get a different perspective from Fernando. He told me about a home for young people living with HIV in San Pedro Sula, a city in Honduras. It is known as the most violent city in the world, according to a publication from the Organization for Security, Justice and Peace from Mexico, January 2015. Even though, there, where drug trafficking, gang wars, political upheaval, corruption, poverty, inequities are everyday language, love and hope shows up.

Amor y Vida (‘Love and Life’) is a home for 33 children and adolescents living with HIV. Not only is it a real home, providing food and a safe roof over their heads, it also provides life-saving medicines, education, and vocational training in printing.

In order to build a future, we all need dreams, and the belief that dreams can come true. Fernando and his friend Jose Fernandez, will be helping the children from Amor y Vida do just that when they take them to Disneyland, Orlando on 1 December – which is World AIDS Day.

AIDS has become the leading cause of death for adolescents in Africa, and the second leading cause for adolescents globally (UNAIDS).

Hearing about Amor y Vida, I felt that maybe one day I’ll be able to see the glass half full. But not until I know that we are helping all young people living with HIV to thrive, so that their dreams can come true.

Knowledge is power: read about young people learning about their sexual health rights