"Don't take the place of adolescents and young people in decision-making, but listen to us and support us, and together we will end AIDS." - Cédric Nininahazwe, executive director of the Burundian National Network of young people living with HIV
Produced by a network of citizen journalists around the world who report the HIV, health, and human rights stories affecting them and their communities, this collection of stories highlights the current challenges that young people are facing in the context of the HIV epidemic. (For more on the Key Correspondents who produced this report, see the Related Summaries link below.) The International HIV/AIDS Alliance commissioned the stories, which are intended to support individuals and organisations in their advocacy work, to help increase attention to the voices of young people in relation to adolescent health in the post-2015 development agenda. The focus is on helping marginalised communities influence HIV and broader health policy, programming, and financing at national and international levels.
Cédric Nininahazwe, quoted above, starts off the document by describing the discrimination faced by young people living with HIV, especially the discrimination faced by youth who are most at risk of the disease, such as men who have sex with men, transgender people, sex workers, and those who use drugs. Nininahazwe notes that "[s]o many countries around the world have laws that violate individual freedoms of key populations, which impact our ability to prevent new infections. This fuels the need to reconsider global efforts and strategy to fight HIV." In describing the challenges young people are tackling in the HIV/AIDS context, he cites the participation of youth representatives in global decision-making bodies, noting that this "should be guaranteed and respected at each step of processes that concern young people, [because] no one can pretend to express the needs of young people and to provide solutions better than young people themselves. An experience is far more eloquent than a secondhand story....These articles written by Key Correspondents capturing the experience and voices of young people are an important contribution to the goal of ensuring adolescent voices are heard at the global level. Nevertheless, our goal can't be accomplished without effective partnership at the national and international level."
Several Key Correspondent stories follow, exploring questions and topics such as:
- "Are adolescents an invisible generation in the HIV response?", by Owen Nyaka, Malawi: "On 17 February 2015, UNICEF [the United Nations Children's Fund] and UNAIDS [the Joint United Nations Programme on HIV/AIDS] launched the All In project to tackle HIV among adolescents, but will it make a difference to the invisible generation of adolescents living with HIV?....Higher-quality data and ongoing research on adolescents' outcomes are urgently needed, disaggregated by gender, key population and age group, in order to facilitate the creation of global evidence for international guidelines. Research should also investigate causes and issues around treatment failures and loss-to-follow-up" - Editor's note: Click here to learn more about the All In project.
- "Sarah's story: 'Why I am not scared of knowing my HIV status'", by James Odong, Uganda: "...Sarah believes attitudes towards HIV among the adolescents in Magoro have changed for the better since more people started being open about their status....Despite Sarah’s willingness to take the test, many adolescents still have problems facing the fact they might have the virus. Abraham Emaasit, laboratory technician at the Magoro Health Centre, says that since the clinic opened he has tested many more young girls than boys....Gabriel Esiku from Soroti Municipality says young men are afraid to go and test because of stigma....For many young people, the failure to disclose is still fuelled by fear. Esther Adeke, 17, knew she was born with the virus but, afraid of rejection, she did not tell her boyfriend....Although he did not contract HIV from her, they broke up. While stigma and discrimination remain prevalent in our society, disclosure of an HIV positive status is always going to be a complex, difficult and very personal matter. It involves talking about a potentially life-threatening, stigmatised and transmissible illness..."
- "Kenyan parents must tell children their HIV status", by Lucy Maroncha, Kenya: "...A child's rite of passage is ripe opportunity for parents and caregivers to discuss HIV. In Kenya, boys undergo circumcision while girls are trained to be respectable women in society. This is a fertile opportunity for disclosure [of HIV status], so that the child understands re-infection and the dangers of infecting another person. It also helps their peers understand them and give the infected child support. During the rite of passage, mainly done in religious institutions, sex and sexuality are among the key topics. Parents could link this with the adult topics that the initiates are taught in these institutions..."
- "Indian school takes a stand against HIV discrimination", by Gautam Yadav, India: "In a rural school in India, 32 children living with HIV have faced devastating discrimination from their community, fortunately the school's principal is protecting their right to education. Amboli is a small village in Surat, Gujarat state, India....Muhammad Ibrahim, the school's principal, says: 'There were 225 students in this school but, once the HIV positive kids took admission here in 2013, all the other kids left the school. In Amboli village, most of the kids are not being allowed to come to the school by their parents. Mostly the parents are farmers and don't want their children to study with these 32 kids living with HIV, as they are scared of their children getting infected.' As someone living with HIV myself, I find the stigma that these girls have faced particularly hard to stomach. But when I met some of them, I was glad to see that they have lots of ambitions and the school's staff are determined to give them a fulfilling education, despite ongoing opposition and prejudice from the local community....Local government officials have taken a firm stand and say that they will not discriminate against the children because of their status. They are trying to educate the villagers with the help of doctors and HIV organisations. District collector Jayprakash Shivhare says: 'These villagers do not have enough information about HIV and AIDS and we are trying hard to convince them. Doctors are also trying their level best to educate the villagers. It will take time but we are sure we will convince the parents'...."
- "How the HIV response is failing teens across Southern Africa", by Wallace Mawire, Zimbabwe: Mawire highlights findings from a study carried out in 2012 and 2013 across 16 sites in Malawi, Mozambique, Zambia, and Zimbabwe. The study, conducted by the Southern African AIDS Trust (SAT), the Network of African People Living with HIV for Southern African Region (NAP+SAR), the International HIV/AIDS Alliance, and Dignitas International, has pointed to "areas where the current HIV response is failing young people, including in sexual health education, HIV prevention and support in adhering to treatment." Mawire explores topics such as: the need to give adolescents better information in order to encourage them to test for HIV, the need for separate health facilities so that young people are not reluctant to test due to the fear of being judged by adults, the barrier of parental consent to test, stigma and problems with adherence, and recommendations from the study, e.g., in Mawire's words: "Using web-based technologies and mobile phones to send out health information and support for treatment adherence, is...a way of making this information more accessible to young people."
- "How poverty and stigma are hindering HIV treatment for Uganda's adolescents", by Esther Wamala, Uganda: "...It is a sad fact that in rural areas of Uganda, people living with HIV cannot easily interact with other community members. A parent of an HIV positive child often has a hard time leaving him or her with a neighbour. If a neighbour agrees to stay with a child, the mother has to bring along a cup and a plate so that their child does not share eating utensils with the hosts' children. It is such stigma which forces some families to migrate to new communities where residents are not aware of their health status. This, in turn complicates matters, because such families usually migrate very far, to areas where they cannot easily access medication due to lack of transport. Sometimes the families are so poor they even find it difficult to pay transport costs for the child to get to the hospital. This means young people can find it difficult to adhere to their HIV antiretroviral treatment....It will not be possible to achieve the goal of zero new HIV infections unless the government invests more in fighting stigma, tackling poverty and making health centres fully equipped and easily accessible..."
- "Nalia's story: adolescents who sell sex in Ethiopia", by Nina Benedicte Kouassi, Ethiopia: Kouassi describes the experiences of a woman who left her village and ended up starting selling sex at the age of 13. She felt "abused, helpless and without health services". Kouassi reports that there are few HIV interventions for adolescents selling sex, despite the fact that Ethiopia is signatory to the UN (United Nations) Convention of the Rights of the Child, which commits to protect the human rights of people under 18 years of age. She calls for "a synergy between different services and organisations. HIV and child protection activists should join forces and consult with adolescents to design the best and most effective interventions. For example, adolescent friendly sexual and reproductive services could be combined with child protection services such as housing, rehabilitation and reunification with families. Most importantly, we must follow a human-rights-centered approach to meet the needs and aspirations of young girls and adolescents."
Email from Sarah Oughton to The Communication Initiative on July 7 2015 and "Adolescents on HIV: our time to be heard", by Sarah Oughton, June 26, 2015. Image credit: © Wallace Mawire