International Youth Day 2013: Putting Youth Living with HIV in the Mix

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Fifty percent of India’s population is below 25 years of age. As they mature sexually, adolescents—especially those from high-risk groups—face vulnerability to HIV and experience a range of unmet sexual & reproductive health (SRH) needs. The SRH needs of too many of India’s adolescents continue to be underserved. Sexuality education in schools is limited, and social norms typically silence discussions of adolescent sexuality and act as barriers to creating responsive services. As adolescents become sexually active, they have limited access to the information and services they need. Adolescents show low levels of knowledge about puberty, menstruation, contraception, safer sex and sexually transmitted infections (STIs), including HIV.

According to an Alliance India study conducted by our CHAHA programme with 72 girls and boys living with HIV and 95 girls and boys affected by HIV (aged 12-18 years), the support needed by these groups was intense, particularly among those who had lost one or both parents to HIV and whose remaining family members struggled to provide the needed level of ongoing support and supervision. In cases of orphaned adolescents, distant relationships with caregivers resulted in reluctance among adolescents to discuss issues and concerns about SRH openly and made them feel more isolated and lonely.

Moreover, the HIV status of adolescents themselves also influenced their level of engagement with their peers and the community. In the same study, adolescent girls living with HIV in Andhra Pradesh appeared to be isolating themselves from their peers due to self-stigma and feared discrimination, which seemed to be more common among girls than boys. As with older girls living with HIV, they appeared to be spending most of their time home alone since many lived in widow-headed households in which their mothers worked all day and were less available for support and conversation.

Boys living with HIV reported being teased by their peers for their stunted growth, delayed development and sexual inactivity often related to HIV status. Many of the adolescent boys living with HIV explained that they did not want to engage in any sexual relationships because they were afraid of ‘spoiling other people’s lives with HIV.’

For young people living with HIV, concerns about physical development, sexuality and reproduction, including getting married and having children, are immediate and profound. They feel pressure to control their desires and limit their aspirations because they are living with HIV. Little effort has been made to give them guidance on their choices, and youth-friendly counseling services are rarely if ever available to them.

Under our European Union-supported Action Project, Alliance India made some progress in efforts to empower youth, including those living with HIV, by educating them about SRH issues that are important to them—contraception, HIV prevention and care, STIs, hygiene, and pregnancy—and by discussing subjects that no one had ever talked to them about before. With this support, youth grew confident to advocate through the Youth Partnership Platforms formed under the project to encourage government to enact policies and offer services that respond more effectively to the SRH needs of young people like themselves.

There is a long journey ahead. This International Youth Day, let’s commit to shaping SRH services and policies that recognize the distinct challenges youth face, that reflect their diversity (including issues around gender identity and same-sex desire), and that address the stigma and discrimination that poisons the lives of adolescents living with HIV.

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The author of this post, Sonal Mehta, is Director: Policy and Programme of India HIV/AIDS Alliance in New Delhi.

The Action Project (2010-13) was funded by the European Union and strengthened and empowered civil society organisations and youth groups to advocate for more responsive policies addressing the sexual and reproductive health and rights (SRHR) of young people. The project focused on the most marginalised young people—MSM and transgender community members, drug users, sex workers and those living with HIV. The project was implemented in partnership with MAMTA and SASO in India and by HASAB in Bangladesh. Over its life, the Action Project contributed to shaping SRHR policies and their implementation in India and Bangladesh by supporting the meaningful participation of young people in relevant processes and programmes.

Alliance India