Jeanne Kouamé is an Ivoirian woman setting up and strengthening local mutual aid associations of people living with AIDS throughout West Africa in anticipation of the multiplying downstream consequences of the disease, such as the care of "AIDS orphans."
The New Idea
Jeanne Kouamé is setting up and encouraging local associations of people living with HIV/AIDS so that they will be able to pool their efforts in order to protect, articulate and promote their rights, interests and responsibilities. With a collective effort resulting in a regional network, these local associations can proactively put into place the mechanisms to deal with the common concerns that worry people suffering from the disease, such as the fate of their children after they have passed away. Through their associations, people living with HIV/AIDS will also be able to bring an effective contribution to the struggle against the infection.According to Jeanne, dealing with HIV/AIDS and its related issues is neither a matter of individual concern nor a question of leadership: it is a matter of being useful to the community, "it is a concern for all and everyone." Her work reflects her conviction that those who stand the best chance of developing social and political programs that deal effectively with the rapid spread of HIV and AIDS in the region are the populations that are the most affected.
By 1990, AIDS had become the leading cause of mortality among men, ahead of malaria and all other illnesses, in Abidjan, the capital of Cote d'Ivoire. Among women, it represents the second cause of death after complications linked with pregnancy and childbirth. A factor in the rapid spread of the disease is the central geographical location of Cote d'Ivoire along the West African coast. With strategic economic links into the interior and good transport infrastructure, it is a crossroads for the subregion. In addition, there are considerable migratory movements of labor and refugees throughout the country due to subregional conflicts.
For years, many Ivoirians and other West African citizens have denied the existence of the AIDS disease. Individuals living with HIV/AIDS typically isolate themselves and hide their disease from family members. They refuse to interact with other infected people because they fear the trauma, stigmatization and economic repercussions they–and their families–will endure if it becomes known that they are HIV-positive or AIDS-infected.
Families living with HIV are exposed to a greater level of poverty and more stress because adults can be forced to give up their sources of income if their disease becomes known or if they become too ill to work. The consequences of the virus are seen in the lives of many children, infected and uninfected, when members of the family have AIDS, and among a growing number of those whose parents have died: the "AIDS orphans." The inherent difficulties of organizing people with HIV/AIDS are compounded by the historical failure of West African organizations of civil society to take up the fight against AIDS, although this is beginning to change. Most of the AIDS-related campaigns in the region have been implemented by government agencies, however, and there is a gap between the services they offer and the individuals who need assistance.
Jeanne is one of the founding members of Light and Action, an Ivoirian organization of people living with HIV/AIDS. Light and Action is one of the first associations of its kind, with the mission of bringing various types of support to infected people and developing their confidence to cope with their situation in a community and peer-based fashion. One of Jeanne's major interests is the support of people ill with AIDS who have been rejected by their spouses or families: she knows from personal experience what they feel.
A fundamental element of Jeanne's strategy is to strengthen the capacity of individuals with AIDS and their communities to care for themselves and their own. As one key example, she works to ensure that more people have access to medication as one key example. She collaborates with Western organizations to get free AZT medication for HIV/AIDS-infected people living in West Africa. In connection with medical specialists, she has developed a booklet geared toward educating people living with HIV/AIDS on how to avoid further threats to their health. In conjunction with the other local "sister" organizations, Jeanne's responsibilities include an advocacy and lobbying role with health officials to enable people living with AIDS to have access to the latest "tritherapy" medication.
A particularly urgent part of Jeanne's work involves the encouragement of the members of the extended family to care for the children of their relatives who have AIDS. She is convinced that it is "not necessary to take these children from their original families." As a mother of a seven-year-old daughter, she has a personal determination to create community based care of children who become orphaned or are abandoned by parents dying of AIDS. "With the numbers of orphans growing steadily in Cote d'Ivoire and other countries within the region, it is necessary to be creative and go beyond orphanages as a solution to protect these children from delinquency, sexual promiscuity at a young age, prostitution and, the ultimate tragic irony, HIV itself," says Jeanne. From her point of view, the partnership between infected people and the rest of their communities is crucial; and she believes this partnership has the power to reinforce solidarity, combat stigma and ignorance and help to prevent the AIDS virus from spreading. Further, it holds the promise of a break in the cycle of a social destruction that would create from the AIDS orphans yet another new group of poor people marginalized from society. Jeanne is organizing studies in Cote d'Ivoire and at the regional level regarding the situation of AIDS orphans to monitor the growth in their number and the care available to them. She hopes to establish a foundation that will support the orphans and their families through income-generating activities.
The second core strand of Jeanne's strategy is to develop Light and Action as a model that can be replicated among local associations of people living with AIDS throughout the region. She has established contacts with such groups in Togo, Benin, Nigeria, Senegal, Gambia, Guinea-Bissau and Burkina Faso to lay the initial groundwork for creating associations in these countries and furthering a network among them. Jeanne is a regional leader among francophone African countries for the International Committee of Seropositive Women; this role has enabled her to participate in training sessions on diverse themes, notably on the reinforcement of individual and institutional capacities. She is also the regional coordinator for West Africa of the nongovernmental Network of African people Living with HIV/AIDS (known as RAP+/NAP+). Though Jeanne continues to work with individuals she is broadening her impact by emphasizing the support of local organizations through institution-building activities, information sharing and regional collaboration among individuals and support groups of people living with HIV/AIDS.
With the goal of creating an effective partnership with government and influencing public policy, Jeanne set up a major collaboration with the Ivoirian National Program in the Fight Against AIDS, which is in charge of the implementation of government policy in this area. This collaboration both attracts considerable logistical and technical support to her initiative and contributes to the effectiveness of the government's resources by linking them to effective community organizations. She is encouraging Light and Action's sister organizations to develop such collaboration with government agencies in other West African countries.
Born in Bouake in 1965, Jeanne lived in Abidjan with her husband and daughter. Her husband became ill, and in 1992, after modern medicines proved ineffective, his parents prevailed on him to return to his village to be treated with traditional medicines. As she was the sole breadwinner for the family she continued working as a secretary in Abidjan and visited her husband whenever possible; but she was concerned that he did not seem to be getting better. She discussed his condition with doctors in Abidjan and learned about AIDS. After trying unsuccessfully to persuade her husband and his family to be tested for AIDS, she had herself and her daughter tested and learned that she was seropositive though, fortunately, her daughter was not. Her husband died a few weeks later. As a result of her direct experience, Jeanne became determined to overcome the problems and to focus the attention of society on the need for action to prevent the spread of the virus. She became the first Ivoirian woman to publicly declare her HIV condition on television and radio throughout the region. She then set about finding other people living with AIDS to build a support network and to fight the disease.
Her colleagues speak of Jeanne as a person with dignity and confidence who is devoted to this cause. She is taking medication to retard the spread of the disease. Endowed with great internal strength and energy, she is encouraging more and more uninfected as well as infected people to play a more active part in solving the social problems created by the AIDS virus.