Why this publication? Because we assume that most readers of this publication work in the field of AIDS, it is possibly unnecessary to note the following: The latest UNAIDS estimates from 2003 report that 40 million people in the world are living with HIV/AIDS, of which 7.4 million live in the Asia-Pacific region. Since the epidemic started, approximately 28 million people have died. AIDS is affecting the very development of nations – slowing economies, harming food production and education by killing farmers and school teachers, and changing the entire demographic of national populations as countries lose adults in their most productive years of life. Most people in the world do not have access to life-saving medicines and will die. On the other hand, it is possibly very useful to note the statistics above because it is why we are working in the field of AIDS and why this publication is being written – so that we can try to do something about it. It may also be useful to motivate ourselves and give us inspiration – and it may be useful for our advocacy work – to remind those who are ignoring AIDS or moving too slowly that this is not a problem of mathematics or logic but of human lives lost. The specific reason for this publication is that it has been shown around the world that the most effective responses to HIV and AIDS in prevention, care and treatment involve those who are affected by the disease. However, this principle is not universally observed. Many governments and programs operate without involving or consulting with affected communities.

A “top-down approach” means that those with power – government officials, medical officers, bureaucrats – impose decisions and proposed solutions upon communities. In order to counter this, we need arguments and evidence that support a response to HIV/AIDS that involves community, the grass-roots level, and the people who are living with as well as those who are affected by HIV/AIDS. Many NGOs and CBOs are weak – they have more work than their small staff can handle, and limited resources. NGOs and CBOs that work with affected communities can be especially strained because of the complications and difficulties of working with groups that face discrimination and marginalisation. NGOs and CBOs that work under these conditions often do not have the resources to develop their work in the areas of policy and advocacy. Most energy is put into keeping the organisation alive, serving their communities and responding to other issues. Few publications specifically focus on the involvement of affected communities in responding to HIV/AIDS and the development of policy and advocacy skills by CBOs and NGOs. This publication aims to address these two important issues. Before doing any of this, it is important to “set the scene”, in other words, to describe how we will explore the issues, from what perspective, and what we intend to achieve by doing so. It is also necessary to describe how particular concepts or ideas will be used to ensure a clear understanding of the key messages in this publication