Young People With HIV Finding Their Voice
A new Community Advisory Board aims to improve research involving HIV-positive youth in Thailand.
Isolation, stigma, and confusion too often go hand in hand for young people with HIV, especially in the Asia-Pacific region where the HIV epidemics are largely smaller and concentrated in key populations. But in recent years, HIV-positive youth have been joining forces with partner organizations to advocate for their own rights and to improve their quality of life.
In late 2016, seven HIV-positive youth groups in central, northern, and northeastern Thailand came together to form the Thai Network of Youth Living with HIV (TNY+). MikeQ, a 23-year-old who was perinatally infected with HIV, was chosen to be the first president of TNY+, which today has a membership of approximately 500 adolescents and young adults living with HIV. MikeQ is also a member of TREAT Asia’s Youth ACATA (Asia Community for AIDS Treatment and Advocacy) program, as is TNY+’s first secretary, Numtan.
TNY+ works cooperatively to help youth living with HIV stay physically and mentally healthy so they can live fulfilling family and social lives. It aims to expand its network to encompass adolescents living with HIV throughout the country and engage with other organizations that work with youth.
Challenges in understanding participation in research studies is among the concerns voiced by some young people with HIV. “Some of our members who participated in research studies didn’t really understand or felt uneasy about the research, but they took part in the studies anyway and didn’t dare to ask questions,” said MikeQ. “Some mentioned that they didn’t get to continue using the medicine they had taken for the research, which made them feel confused with the study regulations. Some others said that they actually didn’t want to go to the appointment regularly but they didn’t feel comfortable enough to refuse the researchers.”
In response to these concerns, in April 2017 some TNY+ members formed the TNY+ Community Advisory Board (TNY+CAB) in coordination with TRCARC, the Thai National Community Advisory Board, and TREAT Asia.
The mission of TNY+CAB is to protect and advocate for the rights of children and youth living with HIV who participate in research studies, and to coordinate with researchers in developing studies that are beneficial to the community. It consists of 13 youth living with HIV, and includes representatives of local groups of LGBTQ individuals, minority ethnic tribes, and people who use drugs. They will be organizing trainings this year to better prepare their members to understand how research is developed, conducted, and monitored. They would then be able to seek membership in other CABs within local research institutions and hospitals, in order to promote youth representation.
The group hopes to develop its organizational capabilities, and to share its experiences with other regional networks to support and advocate for HIV/AIDS-related research studies that best benefit children and youth.