In the course of the AIDS epidemic, community-based organizations have emerged to provide essential services in HIV-related prevention, care and treatment. They have done so in response to the desperate needs of those affected by the epidemic and to fi ll gaps in public sector provision of these services. As antiretroviral medicines have become more affordable, community-based organizations have fought for, and begun to provide, greater access to treatment, including antiretroviral therapy.
Yet little has been done to catalogue the work of community-based organizations in care and treatment. This UNAIDS Best Practice Collection document aims to highlight and advocate the work of civil society, community-based organizations in particular, in responding to the AIDS epidemic in Africa. It is hoped that this will inspire civil society organizations in other regions to replicate the African experience. We equally hope that this document could demonstrate the valuable contributions of civil society as active partners in the response to both national authorities and funding agencies so that the work of community based organizations is supported and strengthened.
In 2004, Sidaction, a Paris-based treatment rights group, in cooperation with the UNAIDS Secretariat and WHO, conducted research on community-based responses to care and treatment in Africa. This research was the fi rst attempt to map the contributions of communitybased organizations in these areas. It aimed to better understand and support the work of community groups, including associations of people living with HIV, in creating greater access to care and treatment. This research was co-funded by the UNAIDS Secretariat and Sidaction.
The research involved creating a database of contacts, sending out two questionnaires, and analysing responses. Survey responses included self-reported data that were not independently verifi ed. Nevertheless, the responses (which were consistent, wide-ranging and similar in tone and content) identifi ed and described: (a) community-based organizations involved in providing care and treatment; (b) the nature and extent of their work; (c) the opportunities and constraints they faced; and (d) ways to support and expand their efforts.
The survey confi rmed the existence of an extensive community response to HIV care and treatment which appears to respond and change according to community needs. Flexible community action comes from medical providers, support groups, networks and consortiums of people living with HIV, and faith-based organizations. Most of these community-based organizations are run by and for people living with HIV. Because they are driven by the needs of their clients, they have become increasingly involved in treatment access. Many report they are shifting, or want to shift, their activities towards treatment.
For example, support groups for affected people have become involved in treatment and compliance support. Networks and consortiums of people living with HIV have oriented their advocacy and policy and programme input towards treatment access. Some faith-based organizations with major experience in health care and dedicated funding sources have moved towards providing antiretroviral therapy. These diverse groups represent signifi cant potential for scaling up access to treatment through different types of community responses and services.
Many community-based organizations are already providing critical care and treatment services which support or ensure treatment access. These include: community mobilization; pre- and post-test counselling; HIV testing and results analysis; psychosocial support; treating opportunistic infections and providing palliative care; home-based care; information, education
and advocacy sessions on antiretroviral therapy and treatment access; fi nancial support and income-generation for purchasing antiretroviral medicines; treatment programmes for women and children; antiretroviral bulk-ordering; prescribing antiretroviral drugs; training health-care workers; medical follow-up; and treatment compliance clubs.
Some community-based organizations report they provide the full range of medical services needed for antiretroviral therapy: medical consultations; prescribing antiretroviral medicines and drugs against opportunistic infections; ordering pre-treatment tests and followup on antiretroviral therapy; therapeutic choice based on laboratory results and stage of HIV infection; monitoring and managing possible adverse effects; and counselling on compliance. The survey said the organizations showed a high level of professionalism and obtained positive therapeutic results.
Several community-based organizations combine their services to provide “total or comprehensive patient care” which encourages clients to come out of isolation, enter HIV testing services, receive and manage results, receive care and treatment, and sustain compliance over time. In some places, it appears that public sector providers have come to recognize and even depend on the work of community-based organizations. This is because they provide muchneeded activities and ensure effi cient use of public services by doing such things as keeping client/patient lists, supporting clients through appointments and procedures,attending to their needs in hospital, and following up on medical and psychosocial issues.
Community-based organizations providing treatment access say that being able to do so has removed the terrible psychological weight of helplessness their staff have felt in the face of sickness and death. Furthermore, in a relatively easy manner they have been able to acquire the new knowledge and skills needed to provide and monitor antiretroviral therapy. However, they struggle with diffi cult ethical decisions such as the allocation of limited supplies, and are under enormous pressure to expand their programmes so they can provide antiretroviral therapy to more clients.
Community-based organizations are also struggling to respond to the fi nancial challenges posed by increasing access to treatment. In the survey, they unanimously supported providing antiretroviral therapy free of charge, stating that free-of-charge services were necessary to bring people into treatment, as well as to sustain treatment and compliance over time. However, the organizations say their greatest challenge is funding the purchase of antiretrovirals for delivery to their clients. Many organizations reported that increased funding would immediately allow them to expand services to more clients, or move into providing antiretroviral therapy if they have not yet done so.
The organizations also report that they have diffi culty in obtaining access to antiretroviral medicines because authorization to purchase or prescribe them is limited in some countries to only a few capital city distribution centres, and/or to mainly city-based physicians. Other challenges include: diffi culty in acquiring funding for costs such as salaries, rent, premises and
equipment, which prevents them from retaining staff and the services of physicians; the need for antiretroviral therapy for their own staff, many of whom are HIV-positive; training staff, clients and the community in treatment and antiretroviral therapy literacy; and managing drug supplies to avoid shortages that can harm clients.
The research confi rmed that community care and treatment responses should be: recognized as an important component of greater access to treatment; brought to the attention of policy-makers, programme-managers and donors; and supported in ways that will lead to greater impact, quality and appropriate partnership with public health efforts. The steps required to support community care and treatment responses include:
If national authorities and donors commit to providing these forms of support, the valuable care and treatment work of community-based organizations will receive the recognition and strengthening it deserves. Their work presents an incredible opportunity to expand treatment. We must ensure this opportunity is not lost.
Providing advocacy and support for community-based responses through North-South and South-South exchanges, funding for purchasing antiretroviral therapy and paying for various operational costs, and policies and programmes that decentralize treatment access;
Providing support for networking among community-based organizations on information, experience, training, drug procurement, supply management, and funding, including for antiretroviral medicines;
Carrying out additional research on community-based treatment opportunities and constraints and ways to: monitor and evaluate service quantity, quality and impact; provide technical assistance to improve quality and coverage; strengthen community responses while supporting primary health responses; and
Undertaking similar efforts to map community involvement in care and treatment on other continents;