Chapter Three: Community Participation: Advocacy & Action
Chapter 2 showed how WHO and partners are galvanizing treatment scale-up as part of a comprehensive response to the pandemic. Forming close partnerships with communities and civil society groups, particularly people living with HIV/AIDS, will be crucial to achieving the treatment target, to the success of the overall response, and to the wider goal of strengthening health systems. Such community participation will include advocacy, delivery of services and support to patients. Involving communities as full partners will require changes to the way in which public health services are delivered.
Throughout the history of HIV/AIDS, many communities and groups have demonstrated remarkable energy in working to help all those whose lives have been affected. This chapter touches on some of the most inspirational examples of that vigour, which have made important differences to public and political perceptions of the disease and led to major and lasting benefits for the community as a whole. Today, the commitment shown by communities is an invaluable resource that can support the expansion of antiretroviral treatment. Beyond that vital objective, it will powerfully influence progress towards more general improvements in public health and access to care.
This chapter describes the emergence of community participation as a recognized dimension of public health work. It then examines some of the historical milestones of civil society involvement in the fight against HIV/AIDS. It emphasizes the power of a rights-based approach to achieving goals. Finally, the chapter explores civil society and community participation in treatment expansion, particularly the role of community health workers.
Communities are groups of people living near each other, or with various social connections, and often with a shared sense of purpose or need. Within the wider community, specific HIV/AIDS communities exist, made up of people living with HIV/AIDS, their friends, families and advocates. These HIV/AIDS communities may or may not adopt formal organizational structures. Civil society organizations--those that do not tall within government or private industry--include associations of people living with HIV/AIDS and their advocates, faith-based organizations, and other groups such as trade unions or employer associations.
Achieving the 3 by 5 target will require building partnerships between national governments, international organizations, civil society and communities--and drawing on the specific strengths of each to get the work done on the ground. Government leadership will be indispensable, and civil society cannot replace the public sector. But part of effective government leadership will be forming partnerships with civil society groups and creating mechanisms to harness the skills available within communities. WHO and other international organizations can facilitate and support the process. By working with communities, the 3 by 5 initiative expresses the vision of Health for All affirmed at Alma-Ata (now Almaty, Kazakhstan) in 1978, which unites people's right to health with their right to participate in the decisions that affect their lives.
COMMUNITY PARTICIPATION IN PUBLIC HEALTH
WHO's Constitution of 1948 states that "Informed opinion and active co-operation on the part of the public are of the utmost importance" in improving health, but it was in the 1960s and early 1970s that the practical benefits of community participation in, and ownership of, health projects began to attract increasing attention. Projects in areas of Guatemala, Niger and the United Republic of Tanzania demonstrated that population health gains could be made as a result of increased community involvement. In these projects, community input helped shape programme priorities and community health workers took on significant responsibilities (1). In 1978, the full participation of the community in the multidimensional work of health improvement became one of the pillars of the Health for All movement. …