(February 2001) On a busy street in downtown Bamako, a faded sign points to a single-story building with peeling paint. The sign reads simply: “Reception Center for Treatment.”
Few passers-by know this is the country’s sole center for medical care and counseling for people living with HIV/AIDS. Even fewer know that it has become a model of its kind in West Africa. To the dozens of people who spend their days at CESAC (Center for Treatment, Activities and Counseling for People Living with HIV/AIDS), it is far more than that.
“This is my family,” said Aminata Coulibaly, a 43-year-old HIV-infected woman, whose frail appearance and shy reserve have not stopped this former literacy teacher from taking a leading role in AIDS prevention campaigns, and, indeed, becoming a national figure in Mali’s fight against the disease. In 1998, she appeared on Malian television and talked about her HIV status, a daring act that she knew would provoke a violent reaction from her family.
Coulibaly credits CESAC with giving her the courage to become an activist. This small, local organization provides comprehensive medical and psychological care for people living with HIV/AIDS. With a permanent staff of four full-time physicians, two nurses, a sociologist, social worker, and psychologist from the National AIDS program, CESAC has transformed the lives of hundreds of people with HIV/AIDS in Mali. Moreover, the prevention campaigns sponsored by CESAC and carried out by people living with HIV are among the country’s main sources of AIDS information.
AIDS Center Operates on a Shoe-String Budget
CESAC was founded in 1996 by Dr. Aliou Sylla, a Malian physician in his late 30s who was among the first in the country to recognize the potential impact of AIDS. Sylla said he realized his mission early in his professional life. In the early 1990s, he treated an elderly woman who was dying of AIDS. Abandoned by her family and neighbors, Sylla stayed with her throughout the final stages of her illness. On the morning before she died, she thanked Sylla for giving her a “good death,” and making sure she “did not die like an animal.” The encounter changed Sylla’s life.
Sylla and Dr. Bintou Dembélé, a fellow student of Sylla’s in medical school and one of the few women physicians in Mali, started working in Koulikourou, one of the first areas to be hard-hit by the AIDS epidemic. Using their own resources, the young doctors drove around the countryside treating people from the back of Sylla’s old car.
In 1995, the Cooperation Francaise gave them money to set up an office for testing and counseling in Koulikourou. A year later, the Cooperation gave funding to start an nongovernmental organization that became the umbrella organization for CESAC.
With a rent-free building from the government of Mali and additional support from the Ministry of Health, CESAC has managed to survive on two-year contracts from the Cooperation Francaise, though with occasional gaps in funds. Their annual operating budget of one million French francs (about US$145,000) covers testing, treatment for opportunistic infections, counseling, staff salaries, and school fees for 100 children who have HIV or have lost parents to AIDS.
Patients Receive Free and Anonymous Testing
On an average day, about 40 people come to CESAC for treatment. Recently, a young girl diagnosed only a few weeks earlier with HIV walked to the clinic alone. Fatima, who is 13 years old, made her way through the crowded streets of downtown Bamako because she knew the doctors at the clinic would take care of her.
Amidigueye Togo, CESAC’s social worker for children, said it was the second time in a month Fatima had come by herself to the center, perhaps a sign that her family was abandoning her, a common fate for children as they develop symptoms of AIDS. Her mother died of AIDS a year ago and her father’s kin, with whom she lives, have expressed doubts that she is her father’s daughter since he seems to be in good health.
Fatima seemed on the verge of losing consciousness. Dr. Dembélé examined the exhausted child who was dehydrated and had a high fever and candidosis. “The sad lives of these children,” said Dr. Dembélé, as she made notes. “They’ve lost their parents, and they know they’re sick. They’re smaller and frailer than their peers. Many are too sick to attend school, and people view them with suspicion, if not hostility.”
Cases such as Fatima’s are not infrequent, though it is unusual for a child to seek out the center on her own. CESAC is a place of last resort for many. They know they will be welcomed here when they can no longer hide their illness, a time when their families often reject them. Treatment at CESAC is free if they cannot pay the 500 CFA (80 cents) a month paid by regular patients, and they know they will receive food and money for transportation.
What distinguishes CESAC from other centers in Africa is that it is always crowded with people waiting for treatment as well as those who come to spend the day there, taking part in the warm, convivial atmosphere. It is a busy, thriving place “with a heart,” said Mamadou Barry, a thin, intense man who was the first person to talk in public in Mali about having HIV. The former president of AMAS (the Malian association for people living with HIV/AIDS), he is at the center every morning at six to open the clinic’s doors.
Dr. Georges Tiendrebeogo, a physician who works on AIDS in West Africa, said, “There’s always a crowd at the center. In other places, you see big empty houses where no one ever goes, or there are people with HIV wandering from hospital to hospital… being accepted nowhere. CESAC responds to a need… People return because they must be satisfied with what they receive.”
CESAC is one of the few places in Mali that offers free and anonymous testing. In just two years, between 1997 and 1999, the number of people who came for testing more than doubled, jumping from 893 to almost 2,050. Those who tested positive for HIV also more than doubled during that time. Since many who test positive become part of the CESAC community, taking part in social activities and relying on the clinic for treatment, CESAC’s workload has increased dramatically.
What most distinguishes CESAC from other AIDS treatment centers in the region is its comprehensive pretest and post-test counseling, much of it carried out by people who have been infected with the virus. Aminata said that the constant support and counseling of people with HIV or AIDS who had been trained by CESAC helped lift the despair that had turned her into a recluse when she learned of her illness. After the doctor confirmed her test result, a person who had contracted the virus spent a long time talking with her.
“He told me he had been diagnosed several years ago but he is still healthy. Afterwards, women from AFAS (an association for women living with HIV sponsored by CESAC) came to visit me at home. After a few months, they asked me to help with their activities, and I became secretary of the organization.”
CESAC’s counseling services extend to families of individuals who have HIV. Social workers from the center and people living with HIV or AIDS talk with spouses and kin to lessen their fears and demonstrate treatment for common infections. They also make house calls to visit people who are ill, bringing food and medicines to those who no longer have the strength to come to the center.
AIDS Workers Create a Trusting, Family-Like Environment
For dozens of people, CESAC’s convivial atmosphere and their close social relationships with the personnel and other people living with HIV are as much a reason to go there as the medical care. One of the center’s most successful programs is the Friday lunch when, like others in this predominantly Muslim country, people at CESAC dress in their best clothes and go to the mosque for public prayers. Afterwards, they all gather around large bowls of steaming food like members of any African extended family.
The women at CESAC are in charge of preparing the lunch. On a recent Friday, Aissita Kané, president of AFAS, was the head cook. Aminata, the association’s secretary, dressed in her Friday finery, hitched her flowing gown off the dirt floor and wrote the recipe for the plat de resistance on the blackboard. A mutton stew with a peanut-spinach sauce and millet was chosen for its nourishing qualities.
Madame Kané stirred the enormous pots of bubbling sauce as children pranced around, sniffing the aromas and competing for the best place. People began to gather, as Dr. Sylla recounted a morning’s discussion with the Minister of Social Development who wanted CESAC to participate in a month-long AIDS prevention campaign. The small, cramped space took on a festive air and a woman with HIV who is raising her four young children alone, said, “This is one day when everyone is happy. We eat well and, for one day, we forget the illness.”
For Dr. Sylla, the Friday gathering has even greater significance. “These women can often no longer cook at home because people are afraid to eat their food,” he said. “In our society, cooking is a woman’s main activity and part of her identity… The Friday lunch at CESAC gives them a chance to be women again.”
Government Hopes to Replicate Success of Treatment Center
The government, as well as local and international nongovernmental organizations in Mali, recognizes CESAC as a leading force in the country’s AIDS program. Its success has even persuaded the government to establish similar centers in Sikasso and Mopti, towns where the AIDS rates are high, according to UNAIDS.
Despite its success, CESAC’s small budget is stretched to breaking point. In the summer of 2000, the finances plunged lower than ever and the clinic could not pay its laboratory bill. Occasionally, they run short of materials needed for testing. As Dr. Mamadou Cissé, a CESAC physician, pointed out, the center’s budget has not increased since its founding in 1996.
In the face of such odds, the center continues to survive. A few organizations provide funding for operating expenses while others make gifts that CESAC uses to extend its services. Plan International, an international development organization based in Britain, gave 10 motorcycles to be used for house visits. An association in Marseilles, called “the Friends of CESAC,” pays school fees for a dozen AIDS orphans. The World Food Program gives food, and physicians in Europe send drugs. Some activities bring in a small, but regular revenue. For instance, CESAC rents out 100 folding chairs for public events, and four hand-pulled carts bring in 300 CFA (about 50 cents) a day – enough, as Dr. Dembélé pointed out, to feed four people.
Members of this informal network are in constant contact, passing along words of encouragement and exchanging information, a hard-to-find resource in the rumor-filled world of AIDS work in Africa. Occasionally, there is a flash of hope. There was one recent burst of joy when a doctor from a local hospital drove into CESAC’s compound and reported that Mali would soon get an antiretroviral drug at wholesale price.
Though only 2 percent of CESAC’s patients can afford the steep price of these drugs (about US$600 a month), the news gave hope that, perhaps, the outside world had not wholly forgotten them. Dr. Sylla, alone in his office for a rare moment, said, “We’re showing people just how much we can do without drugs.” With only a flash of anger, he added, “And how long can the world stand by and do nothing?”
HIV/AIDS in Mali
|Total population (mid-2000)||11.2 million|
|Adults 15-49 infected with HIV||2%|
|Number of adults living with HIV/AIDS||100,000|
|Number of children living with HIV/AIDS||5,000|
|Number of children under 15 years who had lost a mother or both parents to AIDS as at the end of 1999||32,171|
Mali sex workers testing HIV-positive in 1995:
Data from UNAIDS/WHO Epidemiological Fact Sheet 2000 Update.
Victoria Ebin is a freelance journalist and consultant to PRB, based in New York City.