Civil society and treatment expansion
Civil society advocacy helped open the way for the 3 by 5 initiative. UNAIDS and WHO calculated in 2001 that it should be possible to provide 3 million people in developing countries with antiretroviral therapy by the end of 2005, but international commitment, funding and patient enrolment lagged. Energetic advocacy by activist groups in forums such as the 2002 Barcelona International AIDS Conference helped to turn the idea of expanded access to antiretroviral drugs into a definite policy commitment engaging national governments, the United Nations and other major international institutions.
Following the declaration of the global AIDS treatment emergency, representatives of people living with HIV/AIDS from Africa, Asia, the Caribbean, Europe, Latin America and North America were among the key partners consulted in the design of WHO’s 3 by 5 strategy. Ongoing collaboration is vital. Catalysing innovative partnerships is one method of changing ways of thinking and working in global health. The treatment initiative is making community participation a measurable element of programme processes and outputs: an intermediate target has been set of 3000 partnerships established worldwide between formal antiretroviral therapy outlets and community-based groups by December 2004 (16).
From advocacy to service implementation
Advocacy, community education and promotion of rights will be crucial to the success of scaling up treatment. The vital role of communities in prevention and long-term care has been widely acknowledged (17). In many countries aiming to expand coverage with antiretroviral therapy despite severe health workforce shortages, members of local communities will also participate directly in service provision and support (18). Growing evidence from innovative treatment programmes shows that community members and their organizations are also capable of performing a broad range of essential tasks in the provision of antiretroviral treatment services.
Rapid assessments of treatment sites in a number of high-burden countries, together with a few documented programmes, suggest that the core function of communities and families lies in adherence support. In some treatment programmes, community organizations have transferred to their own settings tasks traditionally performed by facility-based formal health workers. For example, trained community members monitor side-effects and supervise pill intake in Haiti and Rwanda (19, 20).
Some associations of people living with HIV/AIDS in settings with limited treatment access have, purely as a survival strategy, initiated their own services with support from organizations in richer countries. They rely on the formal health care delivery system only for essential medical tasks. Many treatment-related tasks, such as the administration of laboratory monitoring, are performed by community members (21). Another example of moving tasks out of formal medical facilities and into the community comes from Uganda, where TASO’s Masaka branch takes responsibility for the initial selection and counselling of patients for antiretroviral treatment, then refers them to a treatment programme located in the district hospital (see Box 3.4).
In some cases, community members have worked within formal health centres. For example, in Thailand, day care centres have been set up within public health facilities, where people living with HIV/AIDS can meet and participate in various activities. Community organizations are an integral part of the care and treatment system. In Khayelitsha, South Africa, lay people have moved into the primary health care centre as counsellors, helping patients to make treatment plans in order to enhance adherence (23).
Experiences in several existing antiretroviral treatment sites suggest that the relationship between health facility and community can and should be structured as a genuine partnership. A partnership model allows for regular dialogue, assigns tasks to those best suited regardless of professional status, and supports mutual feedback. Considerable investments are necessary in terms of training, staff time for supportive supervision, and additional support. A critical issue is sharing ownership of the treatment programme: health workers who are usually accustomed to maintaining control over service provision, specifically with regard to treatment, may be reluctant to share ownership of the treatment programme with communities or even accept community members’ input in responding to clients’ needs.
Employing people living with HIV/AIDS as paid staff members is another strategy that may allow facilities to benefit from their unique skills and knowledge and help to break down barriers between health services, communities and clients. Different disease programmes have reported that health professionals often initially resist the involvement of community members in care and treatment, but later accept this involvement when they see the positive results obtained (24, 25).
Front-line facilities – health centres – are in direct contact with families and clients on a daily basis, and therefore in a position to maintain a functional partnership with communities. Evidence suggests, however, that this unique opportunity is often missed. Community organizations are frequently overlooked by health professionals, and their potential to contribute to health is often not appreciated by the health care system (26).
Shared ownership – increasing the control of communities and clients over health services – is not only desirable from a human rights point of view, it is a requirement for reaching the poor with antiretroviral treatment and other health services. Many success stories exist. In Zambia, the Chikankata faith-based district hospital generated a community process that resulted in excellent joint work for HIV/AIDS prevention and care (27). In one of the poorest communities in Haiti, clients and their fellow community members have become active contributors to antiretroviral treatment services (19). The network of AIDS Communities in South Africa mobilized external support and built a broad partnership to set up and run a treatment clinic in KwaZulu-Natal (28).
The success of the partnership model is clear at the level of small programmes, so the challenge is to scale up these models. As countries move to expand delivery of treatment, existing health service structures may be used to facilitate community partnerships. The most relevant in many settings may be those front-line structures connected with primary health care.
To establish community involvement as normal practice in existing health facilities targeted for scale-up of antiretroviral therapy, efforts are needed to change the relationships between communities and health providers. This implies fostering appropriate attitudes and skills among health professionals to work with communities and put in place incentives for this kind of work. Resource allocation must strengthen the front-line facilities that form the interface with communities. It also implies the need to build community capacity for a greater involvement, and the need to put in place specific arrangements for greater community ownership.