"For all young people living with HIV, you have a responsibility for yourself and please be happy.” - adolescent participant from Thailand
“To stigmatize and discriminate, it’s not good for us young people. They pull us down. Why stigmatize us, we are normal just like anybody.” - adolescent participant from Papua New Guinea
“HIV is not about the infected person, it is about the infected one and the affected one. The one who is suffering is not just the one who is being infected. It may be the partner, the family, and the friends.” - adolescent participant from the Philippines
These are some of the messages that emerged from ‘My Right to Health’, a three-day consultation held in Bangkok on 16-18 February 2013. The meeting brought together 14 adolescents and young people living with HIV from 10 countries in the Asia-Pacific region (1) to share their experiences of living with HIV and identify strategic actions to address shared challenges.
The consultation was organized by the Asia-Pacific Network of People Living with HIV (APN+), in collaboration with the HIV Young Leaders Fund (HYLF), Youth Voices Count and the Global Network of People living with HIV (GNP+), with technical and financial support from UNICEF East-Asia and Pacific Regional Office, UNFPA Asia-Pacific Regional Office, UNESCO’s Asia-Pacific Regional Bureau for Education, and UNAIDS Asia-Pacific Regional Support Team.
With an estimated 500,000 young people aged 10-24 living with HIV in the Asia-Pacific region , the fact these young people face specific challenges is not news to policy makers and programme implementers. Asia (like Africa) is now dealing with the challenge of not only new infections among young people at higher risk of HIV but also those who were vertically infected (i.e. transmission from parent to child). Rico Gustav described the consultation as part of APN+’s “fact finding mission” for the region. “Our work in the region in the last few years has revealed gaps in knowledge about the Asia-Pacific region, especially in contrast to work being done in Africa around young people living with HIV.”
To-date there has been little efforts to support adolescents and young people to express their needs and to identify their advocacy priorities. Ed Ngoksin, a co-facilitator from GNP+, shared that “the HIV response is not structured to bring out the best of young people living with HIV or promote them as agents of change, and there is not enough opportunity for this group of young people to have their voices heard, or their capacity or leadership developed”. Caitlin Chandler, a co-facilitator from HYLF, agreed and shared that “without knowing the actual realties that these young people face, there will always be a disconnect between the services provided, advocacy messages and education delivered, and the reality in the community. So, the more connected we are, the more effective the response will be.”
Prior to the consultation, focus group discussions took place in four countries to get broad inputs on the themes to be discussed during the consultation. Then in Bangkok, the first two days of the consultation established a safe space for participants to share their experiences including:
• knowledge and experiences of HIV treatment and care including challenges of ‘graduating’ from paediatric services to adult services and the potential risks and areas of need;
• access and issues with health and other social and support services;
• relationships and sex including issues around disclosure; and
• leadership in the HIV response.
The third day invited regional stakeholders to listen and discuss the outcomes of the previous two days, including recommendations from participants.
The success of the consultation was largely attributed to the inclusion of a diverse group of participants who, as Vermont Arvesu, a co-facilitator from the Youth AIDS Filipinas Alliance and a consultant for APN+ stated, “were brave enough to talk and articulate their experiences and the issues of their broader community.”
Stigma and discrimination emerged as a critical theme of the consultation. “We are experiencing discrimination, not only by society but by our family. Some of us are being disowned. A lot of us are being outcast by society,” shared one young male participant from the Philippines. Another young participant from Malaysia shared that, “whenever my coworkers are discriminating against an HIV+ person I am afraid that they will find out about my own situation. I want all people to treat us like ordinary people and to respect us.” Rico Gustav, from APN+, noted the importance of this issue for APN+, “in contrast to their older counterparts it (stigma and discrimination) influences how they grow up, understand their surroundings and access services which blocks access to treatment. This is something we really care about”.
Participants also called for better health and psychological/emotional support services, and improved and simplified treatment regimens. Many indicated that they had not received pre- and post-test HIV counseling at the time of their diagnosis, and for those that had been infected perinatally, the disclosure of their status often occurred at a very late age. Said one participant from Nepal, “I was born with HIV and I had a very late diagnosis. It was only done at the age of 16. Before then I didn’t know I was living with HIV… For my case even my parents were not aware that they were living with HIV. If they had diagnosis they could have been more supportive in managing opportunistic infections.” The participant from Thailand agreed, sharing that “it’s really important that there is already a step taken towards disclosure at a very young age, even at the age of 7. For example adolescents living with HIV, by telling them earlier, they can take care of their health better.”
Education, including sexuality education, also emerged as a critical theme as did the role of peer educators in support adolescents living with HIV. One participant from India shared that, “if you were having that education about what is condom, what is sex, then maybe today I would not have this virus in me. You can talk to governments first about sex, gender, sexuality…We need to change some mentality in schools, colleges as well as families.” Another participant from Papua New Guinea shared that she withdrew from her studies after her diagnosis in fear of rejection. She suggested that counseling services should be in place in schools to assist young people to share “their stories, feelings and emotions” and informed stakeholders that “we are wishing and hoping for a stigma-free workplace, school place and for us and for everyone here. Please help us to put some policies in the workplace and school place that are stigma free and discriminatory free.”
Other recommendations made to regional stakeholders from civil society, the United Nations, and other development partners included:
• support for the provision of appropriate sexuality and reproductive health information and services at an earlier age;
• more training regarding HIV knowledge and treatment for families and communities;
• the establishment and strengthening of one-stop centers for information and services;
• improved and simplified treatment regimens;
• more supportive and protective policy and legal environments; and
• development of more peer support or peer education programmes.
The stakeholders attending the third day largely expressed a shared belief that despite good intentions, some aspects of the HIV programming movement to date had not translated into effective action for young people living with HIV. For example, Scott McGill, Senior Regional HIV Advisor for Save the Children, indicated a need for stronger advocacy and programme realignment to address the issues raised around stigma and discrimination, and to “engage other colleagues or sectors from outside HIV services, such as education, livelihoods, child rights governance and other health services especially youth friendly sexual and reproductive health services”. Anandita Philipose, Youth Officer at UNFPA’s Asia-Pacific Regional Office, indicated that UNFPA would be concentrating on “strengthening sexuality education in and out of schools; improving youth friendly services; and encouraging country offices to provide a platform for young people living with HIV to voice their issues”.
Supporting such platforms for adolescents living with HIV to voice their concerns and propose a way forward is a critical outcome of the consultation. One of the participants from the Philippines shared that “I [was] expecting differences between ideas because of differences between cultures but I am surprised that we are united in one vision and mission in life, and by conducting this consultation we are able to hear each other opinions and ideas and it encourages us even more to fight for our rights and everything that will help us while living with HIV”.
In addition to offering guidance and inspiration to the stakeholders, the consultation fostered the development of a community of adolescents living with HIV who are aware of their rights, obligations and values in regards to their health; and who are equipped with the knowledge to lead long, happy and healthy lives.
Follow up to the consultation will include country-level in-depth interviews with young people living with HIV and service providers in select countries, and the production of a final report on the needs of YPLHIV in Asia-Pacific which incorporates outcomes of the consultation and country-level research.
View the Emerging Findings on The Needs of Young People Living with HIV in Asia-Pacific.
For further information, please contact Rebecca Brown, Young Key Affected Populations Support Officer at firstname.lastname@example.org
United Nations Children’s Fund (UNICEF). 2011. Opportunity in Crisis: Preventing HIV from early adolescence to young adulthood. New York: UNICEF.