MAY 2003 — Six years ago, a Catholic missionary from Argentina started seeing AIDS patients at the hospital where she worked in Onitsha, a town in the eastern part of Nigeria. Initially, the cases were few--one or two in a fortnight. But as Dr. Susi Coddazi became known and identified with the disease, the case profile rose.
Dr. Coddazi soon realized that the minimal hospital-based care she was able to provide was grossly inadequate. Most HIV-positive patients did not come to the hospital until they were critically ill, and many came when it was too late. When they were well enough to return home, their families did not know how to take care of them. Troubled by the suffering of her patients, she dreamed of offering them care and support in their communities.
While Dr. Coddazi was nursing this hope in Onitsha, the United States Agency for International Development (USAID) mission in Lagos and the U.S.-based nongovernmental organization (NGO) Family Health International (FHI) were also recognizing the need to help fill the gaps in care for those living with HIV/AIDS. They hoped that attention to care would also stimulate a stronger community response to the epidemic, reinforcing their efforts to promote HIV prevention through the AIDS Control and Prevention (AIDSCAP) Project.
Although most AIDSCAP funds were already committed to prevention projects, FHI had set aside money to support short-term activities and small, innovative pilot projects. In 1996 the AIDSCAP program in Nigeria used its "Rapid-Response Fund" to give Dr. Coddazi's group, the Focolare Movement, a grant for community-based HIV/AIDS care in Onitsha.
Under this pilot project, Dr. Coddazi trained outreach workers to provide care and support to people living with HIV/AIDS and their families in their homes. In just three months, the Focolare outreach workers were able to reach 20 families.
This experience was an eye-opener for all concerned, drawing attention to the needs of families affected by HIV/AIDS and to the potential for strengthening prevention efforts through a more integrated approach. When USAID signed a cooperative agreement with FHI to continue HIV/AIDS activities in Nigeria after the AIDSCAP Project ended, it included an expanded commitment to community-based care. And at the conclusion of that "bridging" agreement in July 1998, the mission planned to continue and support such care projects.
Community Care Givers
Two new community-based care projects were established with support from FHI in December 1997. The Kano state branch of the Society for Women and AIDS in Nigeria (SWAAN) began a pilot project in the northern town of Kano, while the Family Health and Population Action Committee (FAHPAC) started one in Ibadan in the west. The Focolare Movement continued its project in Onitsha, in Anambra state.
The three NGOs work in different parts of the country, but follow the same basic model. Each project is linked to a number of hospitals, where it helps trains staff members in medical and nursing care and counseling for people living with HIV/AIDS. When patients are discharged from these hospitals, they are turned over to a support team of community caregivers.
These motivated volunteers have been trained in HIV/AIDS and sexually transmitted infection (STI) education, basic hygiene, counseling, referral and nutrition. They visit people living with HIV/AIDS and their families at home and also provide counseling and nutrition education at the project offices. Support group members see an average of four families a week.
When support team members encounter difficulties, they are quick to refer clients to the more experienced counselors and health workers in the project. Health workers and volunteers also help families provide palliative care to the terminally ill, making it possible for them to spend their last days at home rather than in a hospital bed.
Dr. Lola Mabogunje, manager of the SWAAN project in Kano, reports that most of her patients with HIV/AIDS have died as a result of tuberculosis (TB). Few families can afford drugs to treat TB, and the health care system is also unable to adequately fill this gap. FHI helped the Focolare Movement approach the German Leprosy Relief Association (GLRA), which now provides anti-TB drugs for the project, and hopes to find a similar source of the drugs for the projects in Ibadan and Kano.
If medications to treat tuberculosis and other opportunistic infections are hard to come by, most Nigerians living with HIV/AIDS can only fantasize about the antiretroviral "cocktail." Two pharmaceutical companies--Roche Nigeria Ltd. and Glaxo Wellcome--market antiretroviral drugs in Nigeria, but only the affluent can afford them. A month's supply of Hivid and Invirase from Roche, for example, costs N56,000 (U.S.$651).
Getting Started
Starting a community-based project is a challenge under any circumstances, but it is doubly difficult in an environment of denial, stigmatization and government apathy. Such was and is still the environment in Nigeria, yet the three FHI-supported projects are thriving. After just eight months, they have reached 1,347 families.
One reason for this success is the role of the private sector NGOs and the commitment of dozens of community volunteers. Project managers say that what they look for in outreach workers and volunteers are compassion, a willingness to help without being judgmental, and a sound knowledge of the disease.
These qualities are essential because the initial phase of the work might be discouraging. "You may be alone, as the community is full of suspicion and fear for your real intentions," Dr. Coddazi said.
The first practical step involves reaching out to traditional and local authorities. The three project managers agree that it is important to make them the entry point into communities.
In Kano, where the local emir is a powerful traditional leader, this approach led to an important breakthrough for SWAAN's project. "We started with the emir, who mandated that the district heads and ward heads speak with us," Dr. Mabogunje said.
The next step involves contacting local hospitals or other health facilities. By establishing a good rapport with hospital authorities, project staff can ensure that a two-way referral system becomes institutionalized.
When the projects began, hospital staff did not know what to do with people living with HIV/AIDS and merely discharged them, closing their eyes to whatever happened thereafter. Phobias about AIDS and misconceptions about how it is transmitted were not uncommon among health care providers. In fact, before the FAHPAC project began, doctors at a hospital in Ibadan even refused to perform surgery on at least one HIV-positive man after learning of his serostatus.
It took time to convince health care providers at this hospital to refer their patients to FAHPAC for follow-up, but now they recognize that the project's services are useful and even complementary to their own work. In all three projects, these referral linkages have been strengthened by the training the projects have provided to virtually all hospital staff who counsel patients about HIV/AIDS.
New Allies
Referrals also come from traditional healers, who once looked upon the community caregivers with suspicion. But project staff allayed their fears by offering to help the healers protect themselves from HIV infection.
Many traditional healers are at risk because they use unsterilized equipment and do not know how to take basic precautions against exposure to HIV while treating patients. This danger was brought home to Dr. Coddazi when an HIV-positive patient sought treatment from a traditional healer, who opened an abcess. "I realized that this traditional healer would soon be infected, and I saw the need to get in contact with him through the patient," she said.
By working with this traditional healer, Dr. Coddazi was able to bring many of the healers in the area together for a seminar on HIV/AIDS. For many of them, it was a turning point.
Before the seminar, traditional healers considered AIDS just another disease and thought its impact had been overdramatized. But Coddazi's commitment impressed them. "If someone paid her way to come and tell us about this AIDS, then it must be true," one seminar participant reasoned. Now many of the traditional healers are among the converted, using the universal precautions Dr. Coddazi taught them and helping to pass on accurate information about HIV/AIDS and its prevention to their patients.
Since traditional healers are the first source of health care for many people throughout Nigeria, project staff in Kano and Ibadan also realized that it would unrealistic to leave them out. Now it is not unusual for healers to seek out project staff and volunteers for information about HIV/AIDS.
Lessons Learned
The need to involve traditional healers was only one of the many lessons the NGOs learned about community-based care during the eight-month pilot projects. Another was the importance of having a physician to provide medical care in the community.
Finding that people living with HIV who identified with the project wanted to receive medical attention in the same environment of love and compassion, the projects took measures to respond to this need. Doctors who volunteer their time help FAHPAC and SWAAN operate clinics, while a physician coordinates the Focolare Movement.
All the projects recognized the importance of involving community members from the beginning. But SWAAN found that in Kano, it also needed to recruit semiliterate men and women to visit families. Having semiliterate women on the support team was particularly important in order to reach other women.
In Moslem northern Nigeria, most men marry more than one wife and their wives are secluded in purdah, explained Dije Abdullahi, the assistant project coordinator for SWAAN/Kano. Even when educated women are available to do the work, they are regarded as being "too civilized and empowered" and in a position to corrupt other women. The semiliterate women, though empowered, are seen as harmless.
Other important lessons include the value of networking with professional groups such as psychologists to help clients with AIDS dementia, suicidal tendencies and other difficult problems and the need for access to a reliable screening center where an antibody test can be done. With the benefit of field experience, the NGOs are using these lessons learned to strengthen their projects' linkages with community members, traditional healers and other health care professionals.
Stigma and Denial
Overcoming the stigma associated with HIV and AIDS is one of the community-based care projects' most difficult challenges. Nigerians living with HIV/AIDS often experience discrimination, abandonment and neglect.
Stigmatization appears to vary by class in Nigeria. Upper-class families, fearing loss of social standing, tend to hide or deny the fact that a family member is HIV-positive. They may even reject a family member and withdraw financial support to avoid society's censure. Those in the lower socioeconomic classes are more likely to stand by the infected. They also shield their serostatus, but for them the fear is of losing jobs or suffering other reprisals by the privileged.
Support team members in Kano tell of a young man living with HIV/AIDS who has been abandoned by his wealthy family. They often wonder aloud why his father, who can afford antiretroviral drugs without any financial stress, chooses to consider social status at the expense of his son's well-being. But for the support team and the new family of fellow HIV-positive people he has found through SWAAN, he would have nowhere to turn.
Some wealthy men will pay for antiretroviral drugs for themselves but not for their wives. Yet in the polygamous setting in Nigeria, one infected man may have up to four wives who are exposed to the risk of infection.
Because of their social and economic dependence on men, women often have no access to information about HIV/AIDS or any means of protecting themselves from the virus. One example is a woman in Kano whose husband refused to tell her that he had tested HIV-positive. After some counseling, he consented to allow the support team to educate his wife about HIV/AIDS prevention. The woman wondered why she needed such information, but her husband kept assuring her that they meant no harm.
Trouble came when the family's eldest daughter requested information and a support team member gave her literature about HIV/AIDS. When her father found it, he rushed to Dr. Mabogunje in a fury and forbade the support team members to visit his home again. The woman still does not know her husband's serostatus, and he will not allow her to take the HIV antibody test herself.
AIDS Orphans
As more and more women become infected with HIV, the number of AIDS orphans is also increasing. The community-based projects are still struggling to find ways to meet orphans' needs for food, clothing, schooling and adult care.
Awelu Ibrahim is 22. His parents died of AIDS, leaving behind nine children. Soon after their mother's death, the youngest child also died.
Their mother's last wish was that the children not be separated. As the eldest, Awelu decided that he would do his utmost to fulfill that wish.
Awelu collects old iron beds, breaks them and resells them to earn enough to feed his brothers and sisters. He leaves home before 6 a.m. to trade and rushes home with whatever money he has made by 10 or 11 in the morning to give the younger ones breakfast. If he does not earn enough to buy food, the family goes hungry that day.
The burden of this responsibility is visibly aging the young man. Sometimes SWAAN/Kano comes to Awelu's aid by providing some food. But the project is not able to help buy medicine for his 5-year-old brother, who is infected with HIV. Awelu wonders how long he can continue before death comes calling.
SWAAN was able to help another 5-year-old AIDS orphan. His aunt came to project staff after his parents died, explaining that her husband refused to let the boy live with them. Members of the support team persuaded the man to take in his nephew by assuring him that the boy could not infect his own children.
Turning the Tide
The extreme poverty of families living with HIV/AIDS is the greatest obstacle to effective community-based care. People look to the caregivers, who are largely volunteers and often have minimal income themselves, to provide virtually everything.
Poverty and a perilously weak economy have also made it difficult to involve communities in HIV/AIDS care and prevention. With many people investing considerable time in wondering how to survive each day, the epidemic is often dismissed as an unnecessary distraction. A popular saying is "Na AIDS I go chop?"--meaning the thought of AIDS will not put food on my table.
But in the areas where the community-based care projects are being implemented, the larger communities are now more concerned and prevention education has intensified. Other communities are also starting to take note. "Communities refer people to us and we get invitations from some local governments outside our project sites to address their people," said Dije Abdullahi of SWAAN/Kano.
One such invitation came from the district head of Dawakin Kudu local government in Kano state, where two women and one man with symptoms associated with AIDS had been driven from the community. A team from SWAAN educated the community leaders, who realized that they should not have expelled people just because they were HIV-positive. Others in the community are learning about ways of preventing HIV transmission.
The projects have also mobilized those living with HIV to change their behavior. Anecdotal evidence gleaned from the monthly meetings of HIV-positive people shows a resolve not to infect others.
In Onitsha, HIV-positive people have formed a support group called "Save the World." Through this group, they hope to create a support network throughout Nigeria.
Members of the group also take personal responsibility for preventing further spread of HIV. Dr. Coddazi says they believe they can make one important contribution to the future of humanity: to "keep the virus to ourselves."
Sustaining Care
The networks of people living with HIV/AIDS associated with the projects offer some hope that a base for continuous community-based support is being developed. For many of them, this work is a lifetime commitment. Other members of the support teams, who have become role models in their communities, are also fired with a zeal to continue.
More community members, including church leaders and local officials, are beginning to wake up to the reality and challenge of HIV/AIDS. "With the important leaders in the church, the barriers are collapsing, and they are realizing that they have to help," Dr. Coddazi said.
Such community support is desperately needed throughout Nigeria, where an estimated 2.3 million people were living with HIV/AIDS by the end of 1997. Although the three FHI-supported projects collectively represent the largest single community-based care effort in the country, they are available in only three towns--a mere drop in a mighty ocean.
Even at this early stage, the three projects are looking for ways to expand and sustain their efforts. Project staff plan to ask religious groups and other prominent organizations for support now to help continue community-base care once donor support ends. "We still have to find a way of doing something because the people will keep coming," Dr. Mabogunje said. "They are our people, and we cannot tell them that we can't help them.
-- Ekong Emah
Ekong Emah is senior program officer in FHI's office in Nigeria.
