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Children and adolescents forgotten by HIV policymakers

Teenager on mobile phone

Teenagers are particularly vulnerable to HIV infection, and policymakers are failing to address the issues they face.

There are too many adolescents dying of HIV. And, one wonders, how did we get here?

Dr Annette Sohn, director of TREAT Asia and vice-president of amfAR, the Foundation for AIDS Research, has raised the question. As part of the National Youth HIV/AIDS Awareness Day on 10 April, amfAR was encouraging everyone to examine how the world has reached this point.

‘With all of the medical advances in treatment and prevention, with all of our big data and technology, why didn’t we notice before things got so bad? Underlying a long list of possible reasons is the lack of focus on youth in the global HIV response. Pediatricians regularly complain that children are at the bottom of the priority list for HIV policymakers and drug manufacturers. Because there are fewer children with HIV than adults and they don’t contribute to a country’s economic output, there is limited financial incentive to develop treatments for them. Furthermore, they are harder to diagnose and treat because of the need for specialized blood tests and training. But if children are at the bottom of the list, adolescents have been forgotten altogether,’ Sohn said.

She observed that the causes of infection in adolescents are often similar, namely risk-taking behaviour that is an inherent part of growing up, or related to situations where they lack enough power or social capital to say ‘no’, or because they lack access to HIV prevention tools such as condoms and clean needles. 

Unfortunately, some are now choosing to give up the fight against HIV by ending their lives through suicide or stopping their medicines. Others have run out of treatment options due to HIV drug resistance – medicine can no longer keep them alive.

In response to a lack of young Asian leaders speaking out at a regional or global level, amfAR’s TREAT Asia team created a youth leadership training programme in 2015 called the Youth Asian Community for AIDS Treatment and Advocacy (Youth ACATA).

This is an effort to mentor emerging youth leaders, and encourage them to speak for themselves and their peers. 

‘In the last couple of months, three friends of one of the programme participants died. All had lived with HIV their whole lives; one committed suicide and two died of complications from AIDS following their decision to stop taking their medicines,’ said Sohn.

Global death rates in young people with HIV are at their highest in the history of the epidemic. According to the World Health Organization and the Global Burden of Disease Study, HIV is now the second-leading cause of death worldwide among adolescents aged 10 to 19.

Young people are the only group for whom HIV-related deaths are rising. In the Asia-Pacific region, deaths from HIV among adults have fallen by 28 per cent since 2005, but have risen by 110 per cent among adolescents, Sohn said.

But all is not lost.

‘In order to reverse adolescent HIV death rates, we need new strategies that successfully reach young people where they are in their lives and personal development. While ensuring they have a voice and central role in how these programmes are developed and implemented, the burden to succeed is one we all should share,’ she said.

Indeed, young people with HIV around the world need our support and commitment to change their reality, so that they can have the chance to live out their lives, even though their friends were not able to, she continued.

In the Philippines, writer Wanggo Gallaga, who is HIV positive, has said that though sex is free, protection against the possible complications and dangers from sex is not.

‘Taking away the budget for contraceptives [which the Philippines government recently implemented] means less protection for the people who are most at risk – those who cannot afford it themselves,’ he says in an email interview.

The government, he says, is still caught up in debating the morality of casual sex while the country’s HIV infection rate is steadily rising: ‘People’s lives are in danger and they are more obsessed with moralistic rhetoric that further increases stigma and discrimination.’

HIV is a global epidemic and lives are being lost. How did we get to this point? The question begs an answer. 

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