Youth Advocates Graduate with Important New Knowledge and Skills

TREAT Asia’s Youth ACATA—Asia Community for AIDS Treatment and Advocacy—program aims to build the capacity of young people living with HIV, especially those who have grown up with the disease, to become advocates on HIV and related issues affecting youth. At a final workshop this past June in Bangkok, the first Youth ACATA class completed its two-year leadership training program.

The class comprised eight young people living with HIV from Cambodia, Indonesia, Thailand, and Vietnam, all between the ages of 17 and 23 when enrolled into Youth ACATA. The program included workshops, site visits, conferences, in-country English course support, and a small grants program, and was supported by the ViiV Healthcare Positive Action for Adolescents Program.

In addition to strengthening participants’ understanding of HIV science and research, the program also provided the opportunity to discuss and learn about human rights, sexual and reproductive health rights, and gender diversity; explore critical psychosocial issues that impact the well-being of HIV-positive youth; and design and implement small advocacy projects in participants’ home countries.

“The Youth ACATA program has increased my knowledge of HIV infection and ARV medicines, as well as my skill in public speaking,” said Nopparuch Muenkaew, a participant from Thailand and one of the founding members of the Thai Network of Positive Youth (TNY+) that was formed earlier this year. “I have learned hands-on the process for managing project proposals and I’ve gained experience in working with foreigners. I’ve met new friends in other countries and shared experiences with them.”

“I gained a lot of knowledge about HIV and AIDS, related tools and materials, working in groups, and exploring good ideas from other places, to help me share my knowledge with other people in my country,” said a participant from Cambodia. “I’m excited to have been involved in the Youth ACATA program.”

A key component involved networking with regional and global representatives from various UN agencies, leading HIV pediatricians and researchers, and community advocates. These experiences presented a unique platform for participants to voice the needs of HIV-positive children and youth and to apply their advocacy skills. Another highlight was a site visit to New Hope for Cambodian Children, a TREAT Asia partner in Cambodia that provides comprehensive medical, housing, and education support to about 300 children living with HIV. “It was emotional and empowering to meet other children with life experiences similar to my own,” said a participant from Vietnam.

“We intend to make the CAB a communication platform between the researchers and our volunteer members and other youth living with HIV.”

“We intend to make the CAB a communication platform between the researchers and our volunteer members and other youth living with HIV.”

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.

“We intend to make the CAB a communication platform between the researchers and our volunteer members and other youth living with HIV,” said MikeQ, who also serves as president of TNY+CAB.

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.