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Programs |
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Chapter 5 |
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During the rainy season, the leaking tin roof on John Mwita's home in a small village west of Moshi forces him and his three tiny children to move their beds into dry corners. Mwita has been unable to fix the roof himself; in 1994, he lost his right arm in an industrial accident and, with no prosthesis to help him function, he can do only the simplest chores. He also cannot afford to hire anyone to do the work for him. Although his employer gave him a desk job after he recovered from the accident, he was let go several months later during a general layoff and has been unable since then to find work. Unfortunately, Mwita's crippling injury, joblessness and consequent poverty were just the beginning of his difficulties. Two years ago, his wife — who had since the accident supported the family by selling in the marketplace — became too sick to work and was diagnosed with AIDS. Mwita then asked for a test and discovered that he is also HIV-positive. She has since died, leaving him alone to care for their children and survive any way he can until he, too, becomes ill. Mwita's is only one of many thousands of tragic stories that HIV/AIDS has written in Tanzania. Because the epidemic is at an advanced stage, the impoverished country is struggling to cope with the growing psychological, financial and health care needs of its HIV-positive citizens and their families. Hospitals in many regions of the country are overflowing with AIDS patients. With limited resources already stretched thin to meet the demands of other social, development and health problems, Tanzania's government agencies and health care facilities are hard-pressed to provide sufficient support to those affected by the epidemic. And — especially given the deep poverty in which many Tanzanians live — traditional and family networks upon which people could once rely as the final safety net are themselves overwhelmed by the needs of HIV-positive people and AIDS orphans. Until recently, little international funding was earmarked for support and care initiatives in countries like Tanzania. While care and support have long been part of the mission of charitable organizations and some community-based NGOs in developing countries, most international donors have focused exclusively on prevention and behavior change efforts. The argument was that funding should be devoted to stemming the spread of the epidemic and ultimately freeing nations to undertake other important development initiatives. This has begun to change, as programmers increasingly perceive the social stress and economic burden caused by the burgeoning population of those who are ill and have been impoverished by the disease, or who, like the thousands of AIDS orphans in every region of the country, need significant and ongoing support to survive and to eventually lead useful and self-sufficient lives. Integrating Care With Prevention What has also changed is that many HIV/AIDS programmers no longer see an artificial divide between prevention and care. First, those who are already infected need to learn how to avoid infecting others — and are more likely to take the responsibility seriously if their own needs are being met. Second, rather than seeing those who are already infected as beyond help and therefore as "charity cases," many in the prevention community now understand that HIV-positive people and their families can articulate some of the most powerful prevention messages to their communities. Third, developing the capacity for caring for AIDS patients at home through initiatives that teach nursing skills to family members relieves some of the enormous burden upon hospitals and clinics barely able to cope with patient loads. And fourth, in countries like Tanzania with high rates of infection, HIV/AIDS prevention programs that ignore the needs of those already ill risk undermining their credibility within the communities they are trying to reach. Because many of the NGOs that joined TAP clusters had long been involved in support, care and counseling, TAP integrated care initiatives into its prevention programming from the beginning. All nine clusters provide a combination of care and counseling services and sometimes material support to HIV-positive community members and their families and to children orphaned by the epidemic. Whenever possible, they also involve them in public prevention activities. At the same time, TAP peer education and BCC prevention activities for the public include sensitization to ease the stigmatization of HIV-positive people. This holistic approach to prevention and care benefits the entire community as it helps people with HIV and AIDS find acceptance among their neighbors. The Iringa cluster of 41 NGOs carries out extensive counseling and home care activities. Hundreds of HIV-positive individuals and their families throughout the region have received counseling, and more than 358 home care visits have provided assistance and counseling to those too ill to leave their homes. The cluster — known for taking advantage of public events and celebrations to get out the prevention message — asked some of the HIV-positive people they have helped to speak before the thousands who attended the 1997 International AIDS Candlelight Memorial. Their riveting accounts of the pain, fear and insecurity they have suffered as HIV-positive people and as the orphaned children of parents who died of AIDS had an enormous impact on the large audience and on the many community leaders with whom they shared the platform. In the Dar es Salaam cluster, the religious NGO PASADA (Pastoral Activities and Services for AIDS, Dar es Salaam Archdiocese) used supplementary funding from TAP to expand the ability of its own community and health centers to reach more HIV-positive clients with counseling and home-based care. Hundreds of patients have received assistance, including visits from mobile teams offering basic care and treatment to patients who cannot leave home. Another member of the Dar es Salaam cluster, Comprehensive Community-Based Rehabilitation in Tanzania (CCBRT), provides legal counseling and support for low-income clients living with HIV/AIDS, including will writing and representation in court for inheritance, adoption and workplace discrimination cases. The Tanzanian legal system is very complex, and people struggling with the death of a spouse from AIDS or with their own illness who also face legal difficulties benefit greatly from expert advice. Widows in particular are often victimized by traditional inheritance practices that leave the dead husband's possessions — even the house itself — to his brothers. CCBRT's clients learn how to write wills to avoid leaving family survivors penniless and homeless. Reaching Deep Into the Community TAP also funded the Tanga AIDS Working Group (TAWG), the lead NGO of the Tanga cluster, to implement HIV/AIDS community- and home-based counseling and care services, with the aim of reducing hospital patient loads. A special innovation of this project has been the involvement of traditional healers in the care network and the creation of partnerships between the healers and the biomedical community (see page 17). TAWG has enlisted the help of long-term AIDS survivors in counseling those newly infected, to help them cope with social stigmatization, anticipate future needs and develop a positive attitude about life despite their serostatus. Many hundreds have taken advantage of TAWG's wide-ranging services since the project began. The TAWG program served as a study site for a six-month AIDSCAP research project to determine the effect care and support have on sexual behavior among those newly diagnosed as HIV-positive — one of the first to examine the linkages between care and prevention. Two groups of about 150 people each who had recently learned of their HIV-positive status enrolled in the study. While the control group received basic pre- and post-test counseling, the experimental group received consistent home- and center-based care and counseling — at least once per month — that included ongoing discussion about such issues as disclosure of HIV-positive status to family members, reducing risk, plans for the future, changing feelings about the diagnosis, family planning, condom use and health concerns. Participants in both groups were then asked whether they were practicing risk reduction. The research team expects to complete its analysis of the results in early 1998. "What we hope to determine is whether enhanced counseling and care decrease sexual risk taking," said Dr. Joan MacNeil of AIDSCAP, who designed the study. "The findings can be used to create new behavior change strategies for those already infected." The Kilimanjaro cluster has provided community- and hospital-based support and counseling to hundreds in the region, and has more than 60 deeply committed home-based care providers who have helped 320 AIDS patients manage their AIDS-related illnesses. Cluster staff have developed a special relationship with John Mwita, who receives ongoing counseling and support but does not yet require medical care at home. Because the cluster has no extra funds set aside to provide basic material support — even in a case as dire as Mwita's — his counselors work to identify other sources, such as church groups and charities, that can supply him with food and clothing for himself and his children and may eventually help him fix his ramshackle house. The cluster does have a small fund for school fees, and this year his six-year-old daughter was able to begin school. Once too ashamed to admit he was HIV-positive, Mwita has been transformed into an activist and a powerful public speaker, who is often invited to address audiences and to speak on radio shows. His appearance at a leadership sensitization seminar in Moshi in April 1997 prompted many of the community leaders present to commit themselves to helping local citizens struggling with the infection. "I don't want to my hide my face any more," said Mwita. "I want to help those who have helped me and tell my neighbors how to avoid the struggle that is now my life." A "Lost Generation" Throughout Tanzania, the impact of the HIV/AIDS epidemic will be felt far into the next generation, by the thousands of children who lose parents to the virus. Young people orphaned by HIV/AIDS become victims of stigmatization, depression and loss of identity. Because traditional family and community networks are increasingly less able to absorb and provide for the growing number of orphaned children, many are also vulnerable to disinheritance, impoverishment, homelessness and malnutrition. Without support, few will have the funds for school fees and will grow up disadvantaged by their lack of education and less able to support themselves adequately. As many as 850,000 young Tanzanians under the age of 15 may be orphaned by AIDS by the year 2000, a "lost generation" unable to contribute to the country's program for future development. Many of the NGOs that have joined TAP clusters have long been involved in providing support for AIDS orphans, and their experience has helped build TAP's ability to shape a response to this growing crisis. On average, each cluster is able to provide some support for 50 orphans — unfortunately, only a tiny percentage of those who need help. An important support strategy for many of the clusters is providing vocational training to older children to ensure their ability to make a living and, in many cases, support their younger siblings as head of the family. The Morogoro cluster, in collaboration with various government agencies, created an extensive vocational training program for local orphans. The cluster works with the Agriculture Ministry to offer training in garden and crop cultivation skills and with the Social Welfare Ministry to provide scholarships for orphans in existing vocational programs. Other clusters, including Arusha and Iringa, set up such activities as crafts and furniture production to provide orphans with a protected workplace and income. The Kilimanjaro cluster provides vocational training for some 250 orphans through two programs within the region that call upon assistance from members of the community and thus help raise citizens' consciousness of the growing problem of orphans in their midst. One, led by cluster member Kilimanjaro Project Against AIDS (MKUKI), provides training in carpentry, cooking, sewing and agriculture for older orphans. The cluster supplies all necessary materials for these workshops, while the community provides classroom space and farming plots. Some of the cost of the program is covered by sales of items produced in the workshops. A second training effort, led by KIWAKKUKI, helps orphans find internships with local craftspeople, including shoemakers and tailors. One 21-year-old who received a shoemaking internship became the sole support for his younger siblings after both parents died of AIDS. The children had been left with no inheritance; what little savings the parents had after they became too ill to work were used to buy medicine and food. The training has been invaluable for him because he is partially disabled from severe scoliosis and a club foot and had been unable to find other work. In addition to placing him in his internship, the cluster solicited outside funds to build a sturdy house for the family and helped the children plant and learn to maintain a garden plot with corn and beans to provide nutritious meals. KIWAKKUKI members also convinced an uncle who had not offered help to give the children a few chickens to add eggs to their diet. Once threatened with homelessness, the family has been able to stay together and survive.
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