This study examines challenges to HIV-positive people's involvement in AIDS policy making and project design and implementation in Asia. Forty-eight interviews were conducted with key players in the HIV sector in Cambodia, India and Indonesia. The major barrier to involvement is AIDS-related stigma. Most people are diagnosed late in infection and have poor access to antiretroviral drugs. The majority of positive people working in HIV/ AIDS have no training in public health or organisational management and few training opportunities are available. Respondents in all countries said NGOs exploit positive people in order to enhance funding opportunities. Representation on policy making bodies is low because the few people well enough to take on these roles often lack the confidence to assert their needs in front of doctors and government officials. Positive activists need advocacy skills to become more effective, encouragement and support to take on roles as educators and counsellors, sustainable incomes, and medication to stay alive.