From 2004 to 2008, TREAT Asia conducted a civil society mentoring program called the Asian Community for AIDS Treatment and Advocacy (ACATA). ACATA provided an opportunity for community members to build their advocacy skills and increase their knowledge of treatment, care, prevention, and policy issues, and aimed to help bridge gaps between civil society, medical providers, and researchers. It was also a precursor to the current Youth ACATA program, which was launched in 2015.
Ten years after the end of the original ACATA program, TREAT Asia caught up with three of its members to hear about what they are doing now and their thoughts on how the program influenced them.
Pheng Pharozin (right) pictured in 2006 with fellow Cambodian activist and ACATA member Mony Pen (left) and former TREAT Asia program manager Jennifer Ho
“The most important thing I learned during my time as an ACATA member was how to give voice to the concerns of women, and to better support their understanding of treatment,” said Pheng Pharozin. When she joined the ACATA program, she was a peer educator with the Cambodian Community of Women Living with HIV AIDS, providing community treatment education for women living with HIV. “ACATA gave us an opportunity to practice what we learned and apply it in real life. I was inspired by the program’s trainings and peer support, and the knowledge exchange between members.”
Pharozin is currently the Equity and Inclusion Program Manager at WaterAid Cambodia, an organization that seeks to establish pathways to universal and sustained water, sanitation, and hygiene (WASH). In her role, she works with the government to develop inclusive guidelines that address the needs of people with disabilities and the elderly in accessing WASH services. She also works to empower marginalized groups—including people with disabilities, female garment factory workers, urban poor communities, floating communities (communities that live on the water), construction workers, and others—to document their challenges in accessing WASH. In addition, she helps build capacity of staff around gender and inclusion.
“Participating in ACATA built my confidence to speak in public and to advocate,” said Pharozin. “As part of the program we met with government officials and stakeholders at the international and local levels to demand that our needs be met. These experiences directly apply to my current position as well.”
Sam Nugraha leading a training session in community-based drug treatment in Jakarta, Indonesia, August 2018
Sam Nugraha had been a longtime HIV counselor, working with people who inject drugs in Indonesia, when he joined ACATA.
“ACATA coached us to empower others by teaching them advocacy strategies, as well as the basics of HIV and treatment,” said Sam. “The program improved my confidence and my knowledge of the global and local situation. It helped me to more effectively provide support to those with treatment challenges.”
Currently, Sam serves as a counselor for people with substance use disorders in the cities of Bogor and Jakarta in Indonesia. Last year, he was elected to a four-year term as chairman of the Indonesian Counselors of Addiction Association (IKAI), an organization with approximately 400 members in 10 provinces. Sam also established PEKA Halfway House, which provides voluntary, community-based treatment for people who use drugs, with or without comorbidities such as HIV/AIDS, hepatitis C, tuberculosis, or mental health issues.
During the past year, Sam qualified as a Global Master Trainer for the Drug Advisory Programme of the Colombo Plan for Cooperative Economic and Social Development in Asia and the Pacific. This qualification enables him to train substance use counselors overseas in the Universal Treatment Curriculum for Substance Use Disorders.
He also works with the UNAIDS Secretariat and with the UN Office of Drugs and Crime HIV/AIDS unit as a community liaison, and he has been a member of the TREAT Asia Steering Committee.
“ACATA’s coaching program helped me to be a better resource for the community. It helped me to teach others about treatment and advocacy, using community-friendly language,” he said.
Thomas Cai (foreground), pictured in 2007, leading a tour for fellow ACATA members of health-care programs run by AIDS Care China in Nanning. (Photo: Jennifer Ho)
Before joining the ACATA, Thomas Cai had already founded AIDS Care China, a community support group for people with HIV/AIDS in his hometown of Guangzhou, China. In 2006, the organization received the Red Ribbon Award from the UN for its work supporting the care and treatment of people living with HIV/AIDS.
“I founded AIDS Care China in response to the treatment access barriers and the stigma and discrimination faced by people living with HIV. This lit my passion to do something,” said Thomas. “Community participation is essential to successful public health and medical approaches to HIV. Without that it doesn’t matter how much funding there is, it will eventually fail. But mobilizing the community to participate meaningfully is a very challenging task; it requires skill and strategy.”
“The ACATA program helped me in many ways,” said Thomas. “The course was very well designed. I learned a lot about treatment as well as how to identify treatment barriers and possible strategies to work them out. Also, every meeting was a recharging process to keep our spiritual momentum.”
Thomas continues to work with AIDS Care China, which has now expanded to Cambodia and Laos.
Thomas Cai recently in Kuala Lumpur, Malaysia“ACATA supported my decision-making process for the development of AIDS Care China,” he said. “We are still working on treatment access issues. We set up clinics in rural areas for migrant populations who were excluded from the government policy. We are also making quality treatment affordable for low-income populations, and emergency medical support for most marginalized populations such as drug users and other poor people. ACATA provided me with the information I needed to be armed and ready to fight for the rights of people who demand treatment.”
Dr. Scott Purdon was director of patient relations for GlaxoSmithKline, the pharmaceutical funder of ACATA. He is currently director of corporate affairs at Cello Health Communications.
“We started with a shy group of passionate individuals who with mentoring from TREAT Asia established themselves across NGOs and government and policy organizations as experts and leaders in access to medicine,” he said. Scott participated in ACATA training workshops, providing insights into the pharmaceutical industry’s objectives and ways of working. “With small steps we helped build capability and witnessed the emergence of young leaders who challenged and improved the lives of people living with and affected by HIV,” he said. “ACATA should be replicated and scaled up—HIV needs inspirational people at the forefront of the challenges.”
While the former ACATA members have by and large seen changes for the better in their countries’ attitudes, they still see room for improvement.
“Since I became involved in advocacy to support people who use drugs, PWID in Indonesia have more acceptance from the public and health care providers, with more service options such as needle exchange programs and opiate substitution treatment—even the use of drugs in moderation,” said Sam. “However, there are still a lot of areas for improvement.”
Sam Nugraha today with his family“Although women in Cambodia are better able to access health services than they were in the past, they still face stigma and discrimination,” said Pharozin. “Women also still have limited knowledge about HIV and its treatment. Even doctors who are not HIV specialists have limited knowledge about the disease—especially pediatricians.”
And what advice would they give to current members of the Youth ACATA program?
“Use the ACATA program as much as possible to build knowledge, capacity, and skills in leadership, advocacy, and other areas,” said Pharozin. “Use ACATA as a bridge to influence decision makers. Use it as a link to career development in the future.”
“Time has changed, the world is shifting, but inequality is still around,” said Thomas. “Being in the ACATA program is an opportunity to change your life. If you are ready to make changes to the world, your life will be colorful and meaningful.”
“Have fun in learning!” said Sam.