As HIV-related deaths among young people rise, so does the need for youth HIV advocacy in Asia
Adolescents are the only group of people living with HIV with a rising mortality rate. A youth advocacy programme initiated by amfAR, The Foundation for AIDS Research, seeks to mobilise HIV-positive youth across the region
More than 30 years into the HIV and Aids pandemic, it remains one of the most serious challenges to global public health. Progress, however, has been made: being HIV-positive is no longer a death sentence as treatments have been developed so that patients can now live as long a life as a normal person.
But this progress is not being felt across the board. Adolescents aged 10 to 19 years are the only group of people living with HIV with a rising mortality rate, according to the World Health Organisation. HIV is now the second leading cause of death among adolescents worldwide.
Ahead of amfAR’s (The Foundation for AIDS Research) second fundraising gala dinner in Hong Kong on March 19, amfAR vice-president Dr Annette Sohn highlights “very concerning statistics” from a United Nations analysis: adolescent HIV-related deaths in the Asia-Pacific region have increased by 110 per cent since 2005, while the death rates in adults have fallen by 28 per cent.
“So how do you reconcile our improved control of HIV as a public health problem among adults, when young people are dying from this infection even though we’re telling them it’s a controllable disease, that if they take their medication they can live as long as people who don’t have HIV?” questions Sohn, a paediatrician and the Bangkok-based director of amfAR’s Treat Asia ((Therapeutics Research, Education, and Aids Training in Asia)) initiative.
“We’ve been living with the HIV epidemic for 30-odd years now, yet attention to young people has been limited. We don’t have a handle at all on why we cannot control their mortality rates.”
Sohn cites a 2013 report by Unicef that showed while the number of AIDS-related deaths for all ages fell by 30 per cent between 2005 and 2012 globally, it increased among adolescents by 50 per cent over the same period.
Of the estimated 1.3 million total adolescent deaths in the world in 2012, nearly 100,000 were due to HIV-related causes. This was surpassed only by road injuries, which caused more than 120,000 deaths, according to the WHO’s Health for the World’s Adolescents report published in 2014. This increase in the number of deaths occurred predominantly in the African Region, where more than 80 per cent of the estimated 2.1 million HIV-positive adolescents in the world live.
Globally, the youth HIV advocacy movement working to confront this crisis is growing; however, very few adolescents in the Asia-Pacific are currently involved, Sohn says.
To get more Asian youth involved in HIV advocacy, Treat Asia launched a programme called Youth Acata (Asia Community for Aids Treatment and Advocacy) last year in an effort to mobilise HIV-positive youth across the region. Eight youths - two each from Indonesia, Cambodia, Thailand and Vietnam - aged 18 to 24, were selected for the programme, which is still ongoing.
“Because amfAR is involved in a number of global policy activities with the UN and WHO, we have had the opportunity to go to a number of stakeholder meetings. We have seen many youth leaders from Africa and Latin America, but we were seeing very few from the Asia-Pacific region. And we struggled to find people who were able and willing to be open about their HIV status and to promote HIV advocacy priorities in public,” says Sohn.
There are a few reasons for this, Sohn suggests, the main one being stigma and discrimination, which is particularly strong in Asia. People think of HIV as shameful and as a death sentence. Sharing one’s HIV status could really damage one’s family and opportunities for education and employment, Sohn says.
Another reason is the lack of tools and knowledge. Language is a barrier in culture-rich Asia. “Some of the people in our group are very strong national advocates. While there’s support for them locally, we’re not seeing the impact they could have on a regional or global level because of their inability to speak English,” she says.
“So, to see young Asian people take on leadership roles in HIV advocacy, we have to help them to get to the point where they feel confident enough and have net worth out there in the world.”
The Youth Acata programme, which has met three times in the past year, began by teaching the eight selected participants about themselves and their own HIV infection. The participants then shared the information with their communities. They have also attended English language courses to enable them to participate more effectively in international meetings and to communicate with advocates from other countries.
Supported by ViiV Healthcare, a drug company that specialises in developing HIV treatments, the programme is now moving onto social media and media training in its second year. The goal is to have at least two youth from the programme attend the 21st International Aids Conference in Durban, South Africa, in July. This will help the youth understand more about what’s happening in the world related to HIV, Sohn says.
“After attending the workshop, I felt more motivated to develop a support group for young people, especially those living with HIV, in Jakarta,” says Sepi Maulana Ardiansyah, a Youth Acata participant. “In Indonesia, HIV programmes for young people usually only focus on HIV prevention, and I will use this opportunity to improve my knowledge and share the information with all my friends, so I can contribute to my community.”
Sohn hopes the Youth Acata programme can be expanded in future to include more youths, including those from Hong Kong. For this, more funds are needed - and that’s why events like the amfAR Hong Kong fundraising dinner is so important, she says. Last year’s inaugural event raised over US$4 million for amfAR’s critical AIDS research programmes.
Youth-focused initiatives are especially important because a young person with HIV has special needs different from that of an adult patient, Sohn says.
“Young people living with HIV are just like young people who are not living with HIV,” she explains. “Adolescence is a very critical period of emotional, psychological, physical and mental development. It’s a time where the brain is developing a great deal in order to help us with decision-making capacity in adulthood.
“Young people are facing this chronic disease in a critical time of transition in their life. It’s very different from an adult, who’s already educated, or with a family, and who has social and economic capital to help balance the impact of HIV. A young person is not independent; they have to rely on their families or caregivers to support them financially, they’re still in school. For them to be dealing with the challenges of this kind of infection - one highly stigmatised by their own community and society - it’s a lot to cope with.”
Sohn cites findings revealed recently of two large clinical trials of a vaginal ring aimed at protecting women at high risk of being infected with HIV by slowly secreting an antiretroviral drug into the vagina. In the two placebo-controlled trials involving a total of 4,500 women aged 18 to 45 in South Africa, Malawi, Uganda and Zimbabwe, it reduced infections by about 30 per cent.
But the ring didn’t do nearly as much for women aged 18 to 21, conferring a mere 15 per cent protection in one study and had none whatsoever in the other. In women over 21, however, efficacy hit 56 per cent in one study and 37 per cent in the other. Preliminary evidence suggests the ring offered less protection in younger women because many did not wear it for the entire 28 days between each study visit.
“These studies for me really tell the story: a young person’s decision making, context and lifestyle are different from an adult’s. If we don’t understand what’s driving their behaviour, what they care about, what their opinions are, how do we expect to prevent or treat HIV successfully?”