Community Organizations and the AIDS Response

by Moustapha Gueye

Since time immemorial people have reacted to new phenomena, particularly when their physical and social integrity or health were at stake, by adopting a variety of strategies. These have included seeking comfort and reassurance from friends, other members of the close community or relatives; self-medication; and treatment by traditional healers or medicine men, depending on the beliefs and practices that hold sway within a particular community. These strategies for finding solutions existed well before AIDS, and were used for illnesses that in most cases were curable.

AIDS spreads as a result of social, economic and interpersonal dysfunctions, and its impact exacerbates deprivation and problems when it does not simply create them. The AIDS epidemic has upset all our individual and collective human certainties. It has also called into question not only the nature of our relations with our environment, but also the nature of the bonds of solidarity between individuals. At the same time, the epidemic has laid bare the shortcomings of human relations: power relations and the sharing of responsibility between men and women, rich and poor, and between present and future generations.

However, it has also reminded us of the value of virtues such as humility, compassion, love, sharing, mutual help, respect for others, dignity, and the protection of human rights.

In response to this threat to people’s personal and professional lives, individuals and their families reacted. Conventional reactions soon proved inadequate, however, and an unprecedented mobilization of the whole community and of its diverse forms of organization became necessary. In this way, community-based organizations (CBOs), NGOs and women’s groups that used to concern themselves with development began to turn their attention to information and assistance activities before developing more coherent response programmes. As a result, the community response has found itself in the forefront of the various efforts to provide a response. It has also acted as a catalyst for politicians and continues to inspire and complement their efforts.

We were familiar with community organizations involved in activities to develop health services and education. These organizations have been compelled to adapt their programmes and practices to the threat posed by AIDS. Depending on their area of activity, they have innovated new forms of participative research and have set up new partnerships. Against a background of ever-increasing government penury and insufficient services, they have taken the lead in responding. In an ideal world social services should be the responsibility of governments, but in the context of AIDS so great is the urgency that communities and community organizations have taken fate into their own hands by initiating activities themselves.


Education and Information Campaigns

Community organizations continue to operate education and information programmes with a focus on young people, women, workers, schools, prisoners, organized bodies and the population at large. The challenge they have to face is the lack of correlation between increased knowledge and changes in behaviour. This makes it all the more necessary to innovate and implement strategies based on people’s actual experiences.


Capacity Building

Community organizations are also involved in training volunteers, health workers, peer counsellors, home carers and project managers. Frequently, their training programmes develop skills for caring for patients in the terminal phase, project management and income generation.


Condom Promotion and Distribution

Condoms are distributed either free of charge or under a cost-recovery system to sex workers, young people, people living with HIV/AIDS (PWAs) and to other interested persons.


Advice and Support

Advisory services are available for individuals, their families, children and the community to enable them to overcome the psychological, emotional, social, financial and medical consequences of infection. Counselling is also provided to families that have lost one of their members, and to the community to strengthen attitudes that generate changes in behaviour and foster greater willingness to discuss issues relating to sex and AIDS. Advice is also given on voluntary screening; this often enables couples to take a decision before marrying, before having children, or on a whole range of matters that vary from one person to another.


Home Care

This is an extension of primary health care and an integral part of the continuity of care. CBOs and families evaluate the needs of PWAs and provide patients with supplements of food and drugs, and with spiritual and moral support to the best of their ability.


Support for Orphans

Community organizations support children who have been orphaned by AIDS. Existing programmes encourage the maintenance of orphans in their families and community. Various types of support are provided, including food, clothing, and payment of school fees, medical and legal expenses. Organizations encourage families and the community to share the support and care provided for children.


Advocacy

Community organizations are involved in advocacy on behalf of the interests of PWAs in the community. Here are some examples of advocacy goals and activities:
--firmer and deeper commitment by governments;
--greater mobilization and better distribution of human, financial and material resources;
--development of a favourable environment free from discrimination, stigmatization and denial;
--improved access to care, treatment, and to free and anonymous screening services;
--measures to protect the rights of children, support for orphans, and the need for legislation to protect children’s rights;
--measures to protect the rights of women, and in particular to foster greater independence for women and the right to make choices about their sexuality; and
--a greater research effort to produce an effective and accessible vaccine.


Networking and Information Sharing: The Example of AfriCASO

AfriCASO is a network of African non-governmental organizations, community-based organizations, associations of people living with HIV/AIDS, and local communities engaged in efforts to control HIV/AIDS in Africa. Through information exchange, advocacy and representation, the network seeks to enhance the efforts of these groups to reduce HIV/AIDS transmission, provide PWAs with care and support, and minimize the impact of HIV/AIDS on individuals, families and the community.

The flexibility and adaptability of community-based organizations, as well as their ability to form and maintain partnerships and influence politicians and government decisions, have facilitated their action. Where states are weak, community organizations are at the forefront of efforts to mobilize the different actors and advocacy.

The efforts of community organizations will be complete and durable only if they are supported by governments, international organizations and agencies, religious organizations and the private sector.

Voices from Africa no. 10