Review Community-based organizations in HIV/AIDS prevention, patient care and control in Ethiopia Helmut Kloos 1, Tadesse Wuhib2, Damen Haile Mariam3 and Bernt Lindtjorn4

Abstract The main objective of this review is to provide a preliminary evaluation of the suitability of community-based organizations (CBOs) to contribute to HIV/AIDS prevention, care/support and control programs in Ethiopia. In order to put CBOs and programs in the context of HIV transmission and spread, the role of the Multisectoral HIV/AIDS Strategy (2000-2004) and other government policies and programs in promoting an environment conducive for these organizations and initiatives are highlighted. The Ethiopian literature and recent news releases on CBOs were reviewed and findings examined in the context of recent government policies, community initiatives and prevailing infrastructure in health programs, socioeconomic and cultural constraints. Findings show that the Multisectoral HIV/AIDS Strategy, the current Health Policy, and plans to strengthen the weredas and kebeles facilitate the development of CBOs and programs and infrastructure through the HIV/AIDS Council, the Ministry of Health and various other governmental organizations. CBOs studied are at different stages of planning and implementing preventive and care/support programs but little is known about their progress, operations and effectiveness due to the recency of most programs and lack of monitoring and evaluation mechanisms. Although most CBOs are either still in the formative stage or in process of carrying out HIV/AIDS prevention programs on a limited scale, their self initiative, their knowledge of and acceptance by the community and their relative cost-effectiveness render them suitable as owners, advocates and participants in programs. Several organizations and health agents are operating in integrated primary health and HIV/AIDS prevention programs that have a multi-disease, multi-organizational and poverty-reduction focus and use appropriate and promising behavioral change communication methods that may contribute significantly to overcoming social stigma and reduce HIV exposure risk. The various CBOs can be partners in HIV/AIDS prevention, patient care/support and control programs. They may facilitate efforts to curb the spread of HIV through the expansion of awareness creation and prevention initiatives and also provide patient care and support. The kebele may act as forum for community initiatives and as a link between the community and outside institutions if they can overcome bureaucratic intransigence and create an enabling environment. Towards that objective, CBOs need both internal strengthening of programs and outside support for their sustainability, and persisting stigma and discrimination against living with HIV/AIDS persons need to be reduced. Among new strategies, integrated home-based care programs involving people living with HIV/AIDS (PLWHA), families and neighbors, and poverty alleviation with an integrated HIV/AIDS component promise to create an enabling environment and promote project ownership by communities, which facilitate program design, management and effectiveness. Recommendations are made for further research towards identifying, promoting, strengthening and upscaling CBOs and programs to the regional and national levels. 1 Department of Epidemiology and Biostatistics, University of California, San Francisco Medical Center, San Francisco, California, USA 2 U.S. Centers for Disease Control and Prevention (CDC), Addis Ababa Office, Addis Ababa 3 Department of Community Health , Addis University, Addis Ababa, Ethiopia 4 Yirga Alem Hospital, Yirga Alem, Ethiopia

4 Ethiop.J.Health Dev. ________________________________________________________________________________ Introduction Various estimates of HIV infections in Ethiopia ranging from 2.1 to 3.0 million have been published in 2000 and 2001 and an estimated 117,000 to 208,000 people aged 15-49 died of AIDS in 2001 alone (1, 2). But these are all rough estimates and the incidence of HIV infections and AIDS cases apparently continue to rise rapidly. This indicates that only a fast, committed response can avert a disastrous impact on Ethiopia’s health and socioeconomic development. In 2000, the Ethiopian government implemented a comprehensive, multisectoral HIV/AIDS 5-year strategic plan. There is increasing evidence from Uganda, Thailand, Senegal and other countries with successful HIV/AIDS prevention programs that a diverse spectrum of community-based participation, in conjunction with high level political commitment, is the most effective approach to controlling the epidemic. Programs that work within existing social support networks, internally driven responses that are community owned, are particularly promising (3,4). Kebede et al. (5) and others reviewed the epidemiology of HIV infection in Ethiopia and major risk factors. They concluded that major factors contributing to the rapid spread of HIV include persisting high prevalence of unprotected sex with multiple partners, seasonal migration of workers, dislocation of many people due to the civil war and resettlement programs, high STI rates in the general population, the disadvantaged position of women in socio-economic and sexual decision making, increasing sexual activity among youth with multiple partners due to delayed marriage, poverty, high unemployment rates, exacerbated by the demobilization of the armed forces, and lack of preventive and treatment programs (5-11). Whereas commercial sex workers, truck drivers and soldiers were groups with high risk

behavior contributing to the early spread of HIV infection, the general population, especially young females, have become increasingly infected during recent years. Constraints in HIV/AIDS prevention and control in Ethiopia include persistence of inadequate human resources and managerial capacity at all levels, poor coordination of anti-HIV/AIDS activities among government, NGO and other agencies, increasing urban-rural spread of HIV, a weak surveillance system, inadequate community participation, discrimination and lack of care and support for people living with HIV/AIDS (PLWHA), inadequate voluntary counseling and testing (VCT) services, and information, education and communication (IEC), and lack of operational research (5, 11-13). In addition, high HIV prevalence in antenatal attendants indicates high vertical transmission rates (5) in the absence of antiretroviral drugs through the medical services, although no reliable data are available. These are some of the major epidemiological, socioeconomic, attitudinal, behavioral and capacity factors that are involved in the spread, prevention and control of the HIV/AIDS epidemic in Ethiopia. The HIV/AIDS Policy of 1998 (14), the Five-Year Multisectoral Strategic Plan 2000-2004 (15), and the Second Five-Year Plan of the Health Sector (2001/02-2004/05) (16) all emphasize rural health, decentralization and community participation, in line with the 1993 Health Policy of the government (17). Various national HIV/AIDS programs show that decentralized, multisectoral, participatory planning and implementation are more effective than the rural development programs that relied on central sectoral agencies. Community-based programs have been particularly effective in HIV/AIDS prevention, care, support and treatment programs in Africa (18). Although community participation is increasingly considered to be a crucial factor in the fight against HIV/AIDS (19-22), it received

Community-based organization in HIV/AIDS prevention and control 5 ___________________________________________________________________ relatively little attention in Ethiopia until recently. This is largely due to the persistence of an environment of stigmatization against persons with HIV/AIDS and lack of enabling discussion forums, preventing infected persons from coming forward, and the persisting problem of generating mutually beneficial partnerships between outside agencies and communities. In addition to the recognition that the traditional top-down public health approach to community participation cannot satisfactorily “manage” the complex behavioral and socioeconomic environment of the HIV/AIDS epidemic or generate strong community commitment (23), there is also increasing evidence that deep-rooted stigma cannot be reduced through the usual awareness creation campaigns but through community-based and community-trained support groups, which promote open discussion of the HIV/AIDS problem (20,24). Due to the high acceptability of and respect toward community-based organizations because of their cultural and social compatibility, they may be appropriate, effective, and necessary advocates and vehicles in HIV prevention and patient care/support programs (24-27). In spite of the central importance of CBOs in HIV/AIDS prevention and mitigation, the accompanying bibliography by Converse et al. with more than 900 references includes only a dozen papers on the potential role of community-based initiatives and poverty reduction programs in HIV/AIDS prevention efforts in Ethiopia. Kloos and Haile Mariam (25) summarized information from the literature on several CBOs, especially those based in the kebeles. Pankhurst and Haile Mariam (26) described in depth the evolution and functions of iddir as a community funeral and potential health service organization, Surur and Kaba (27) developed a pilot training project for both Orthodox Christian and Moslem religious leaders and Gebre Selassie et al. (24) concluded from their surveys of CBOs that their self motivation, acceptability in the

community and potential in community mobilization makes them an ideal media for behavior change communication and stigma reduction and as a provider of home-based care. In addition to formal CBOs, local voluntary support groups and agents must also be considered, since they have been found effective in caring for and reducing stigma against AIDS patients and orphans (20). Therefore, groups and individuals are defined in this paper as “community-based organizations”. The objective of this paper is to examine the development and participation of some CBOs and their programs in HIV/AIDS prevention, control and patient care activities with a focus on the suitability and experiences of the major CBOs and community-linked programs that are being considered or are potentially suitable partners. By discussing these organizations in relation to both recent policies and health program developments by the Ethiopian government as well as cross-cutting issues and relevant technological developments the complexity of the issues and possibilities for progress are examined. This paper emphasizes the fact the HIV/AIDS is not primarily a medical but a socioeconomic and developmental problem that requires a multidisciplinary response. Fighting HIV/AIDS has been compared to a national liberation war where everyone is a stakeholder (28), although community leaders and organizations are expected to play a coordinating role in program development and implementation and the health services and other outside organizations must provide technical and material support (15). Policies and Programs Conducive to Community Initiatives Decentralization measures granted all regions states in Ethiopia their own constitution and the power to generate and administer revenues for their health and other sectoral programs, with reduced administrative links to the central government (29). The 1993 Health Policy

6 Ethiop.J.Health Dev. ________________________________________________________________________________ emphasizes rural health, decentralization and primary health care (17), reflected in the increase in the proportion of the health budget allocated to preventive primary health care from 31.5% in 1995 to 53.4% in 2000 (30). By 1996, the regional governments controlled more than four-fifths of the recurrent and capital budgets (31), but their program implementation capacity is still low. These and other policies and measures are consistent with the Bamako Initiative of 1987, which promotes accelerated primary health care at the district level and below, giving priority to women and children, and revitalizing the health system (32). In addition to the emphasis given by the government to preventive primary health, major national responses to the HIV/AIDS epidemic since 1985 have been the issuance by the government of the National AIDS Policy in 1998 (14), the establishment of the National HIV/AIDS Council in 2000 (33), in 2002 the National HIV/Prevention and Control Council and the HIV/AIDS Prevention Office under Proclamation 276/2002 (34), and the development, funding and implementation of the Multisectoral HIV/AIDS Strategic Plan for 2000-2004 (15). National HIV/AIDS programs prior to the current Plan were centrally planned and implemented and did not allow for community participation. The objectives of the HIV/AIDS Policy are to 1) establish effective HIV/AIDS prevention and mitigation strategies to curb the spread of the epidemic; 2) promote a broad, multi-sectoral response to HIV/AIDS, including more effective coordination and resource utilization, by government, NGOs, the private sector, and communities; 3) encourage government sectors, NGOs, the private sector and communities to take measures to alleviate the social and economic impact of HIV/AIDS; 4) support a proper institutional, home- and community-based care and psychological environment for PLWHA, orphans, and surviving dependents;

5) safeguard the human rights of PLWHA and avoid discrimination against them; 6) empower women, youth, and other vulnerable groups at risk to take action to protect themselves against HIV/AIDS; and 7) promote and encourage research activities targeted toward preventive, curative and rehabilitative aspects of HIV/AIDS. Specific guidelines for program implementation from the central to the village levels have been issued by the government (14). Priority is given to participation of local communities at the kebele and wereda levels, which are scheduled to receive most of the grant money through small grants and block grants, respectively (35). The recent changes in the administrative infrastructure as part of the decentralization process is transferring a number of responsibilities and fiscal empowerment from the central and regional governments to the weredas and kebeles. This fundamental shift in the country’s administration gives communities through their elected councils the power to plan, allocate budget and implement programs to address their health and other socio-economic problems. This key process, supported by budget grants, can unlock the energies of communities to face disease and poverty problems at their roots (36). This can also strengthen infrastructure and managerial capacity at the wereda and kebele levels, where program needs for resources and staffing will be particularly great (37-39). Empowerment of CBOs can generate much needed local management and leadership capacity towards reducing chronic HIV/AIDS manpower shortage and giving communities a greater stake in all phases of the programs. There continues to be great need for well established NGOs to closely collaborate with and assist the government in developing operational systems that can effectively transform incoming resources into equitable care and prevention, a situation described elsewhere in sub-Saharan Africa (40).

Community-based organization in HIV/AIDS prevention and control 7 ___________________________________________________________________ Although still in its early stage, the voluntary counseling and testing (VCT) program, especially in conjunction with antiretroviral treatment and if used by both partners and married couples, promises to become a major tool in breaking the silence about HIV/AIDS and reducing both multi-partner sex and vertical transmission by strengthening trust in the health services (41-43). A high unmet demand for HIV testing was reported by the Demographic and Health Survey, with 69.4% of respondents in urban and 64.0% in rural areas willing to be tested (44). The ongoing extension of the network of VCT centers and HIV laboratories (that includes the involvement of the private sector health facilities in VCT activities) and improvements in the general health services can increase coverage of the wider population at risk of HIV infection once more counselors can be upgraded, employed and supported with test kits in the regions and in rural areas (41,43). The proposed increase in coverage of ‘frontline health workers’ from a 1:11,472 health worker/population ratio to 1:7,572 during the Second Five-Year Plan of the Health Sector Development Program (2000/1-2004/5) of the Ethiopian Ministry of Health, together with the planned construction of 176 health centers and 12 district hospitals (45), the introduction of simple and rapid HIV tests (46) can make health services and VCT services more accessible to kebeles and other CBOs in rural areas. However, this also requires improvements in the AIDS patient referral system, upgrading of HIV screening laboratories and reducing processing time of test results (47). But for any of these and other technological improvements to reduce mother-to-child transmission, community-level changes in attitudes about HIV/AIDS are required and women testing positive must be assured of confidentiality and psycho-social support (48). Other promising programs and guidelines are discussed below.

Community-Based Organizations Kebele: The kebele has been involved in building clinics, schools and other social infrastructure. Since the Derg period the kebele health services provided, through their traditional birth attendants (TBAs) and community health agents (CHAs), basic health care to mostly poorer people in urban and rural areas. The unsatisfactory record of the kebele in the area of primary health care in the past, due to lack of community and government support (49-51) emphasizes the need to strengthen the kebele and its health services. Their involvement in HIV/AIDS prevention and patient care activities at the community level, including control of harmful traditional practices, HIV/AIDS awareness campaigns, patient home care and referral to voluntary testing and counseling centers, will require the mobilization of considerable resources at the kebele, wereda and regional levels. In Uganda, financial resources and audience participation in planning and executing the anti-AIDS campaign were identified as the key elements in its success (52). Most kebeles are still inadequately prepared for the task of planning for and developing viable anti-AIDS programs. Moreover, while the political function of the kebele has strengthened its administrative capabilities and may make it a suitable coordinating body, its bureaucratic tendencies may both delay interventions and memories of human rights abuses under the Derg may fail to create an enabling environment in certain communities. According to the National HIV/AIDS Prevention and Control Council Secretariat, 3,500 HIV/AIDS Prevention and Control Councils had been established in 3,500 kebeles in 150 weredas by mid 2002 (53) although their functional status remains to be determined. Partnerships between kebeles, NGOs, the private sector and government agencies can

8 Ethiop.J.Health Dev. ________________________________________________________________________________ provide much-needed technical assistance, information and knowledge through partner networks and thus better services, participation, best practices (54), and monitoring and evaluation of patient care and support programs (55). The United States Government Center of Disease Control and Prevention HIV/AIDS program in Ethiopia supported capacity Building in all weredas in Addis Ababa by assisting with streamlining processes, coordinating funding streams and managing programs (56). These activities may strengthen community development at the town and kebele levels and thus benefit CBOs and programs focused on HIV/AIDS prevention and mitigation. Limited implementation capacity requires that the HIV/AIDS prevention and control program is built systematically. This has been the approach used in the World Bank HIV Prevention Program (35, 37). It has been suggested that periodic kebele meetings focusing on HIV/AIDS, the establishment of focus groups and educational programs for highly affected groups, the revival of the kebele youth associations with the goal of pursuing HIV/AIDS programs related to youth, including free and subsidized distribution of condoms through the kebele structure, and advocacy of HIV/AIDS issues through the wereda and kebele elections may be promising front line activities (58). The effectiveness of kebele, iddir and other CBOs in reaching the people is also indicated by the high percentage of persons (68.2% men and 67.5% women) who named community events as their source of knowledge about HIV/AIDS in the national Demographic and Health Survey. This far surpassed those who named radio (51.5% men and 25.3% women), friends and relatives (24.8% and 17.8%), health workers (17.5% and 11.2%) or schools and teachers (14.7% and 8.2%) (44). The proposed training of communicators from farmers associations and agricultural extension

workers for educating farmers about HIV/AIDS prevention and care on market days and during cultural events (59) holds promise if these activities can be carried out in a culturally appropriate manner. Even though people come to such gatherings for other purposes, they tend to be receptive to short, culturally appropriate and appealing HIV/AIDS related messages and activities. HIV/AIDS preventive information may be presented in the form of mini-media (songs and brief messages through loudspeakers), mobile movie films, attractive pictures and cartoons on flip charts, colorful pictures in the form of flyers and leaflets, and mobile displays on open pick-up vehicles. It is also possible to distribute condoms in such situations and to advocate the benefits of VCT and to reduce fear of positive test results and stigma. These and other preventive activities should be explored especially in market places, where peoples’ behavior may contribute to the spread of HIV/AIDS to rural areas, making them appropriate places for delivering IEC activities. This strategy may be implemented by organizing advocacy meetings and planning sessions for community leaders at the kebele and wereda levels (59). Traditional Birth Attendants: Although traditional birth attendants (TBAs) and community health agents (CHAs) usually function through the kebele they are discussed here separately to highlight their strengths and weaknesses. In Ethiopia, as in other African countries where most women deliver at home without the assistance of medical services, trained traditional birth attendants (TTBAs) may play a significant role in HIV/AIDS prevention by reaching pregnant women not currently receiving formal antenatal care and by assisting with delivery of primary prevention services. During the 1998 Health and Nutrition Survey, 93.4% of the rural and urban women who gave birth during the previous two years stated that they had delivered at home and 45.2% were attended by untrained TBAs, 5.7% by TTBAs, 29.4% by lay people and only 6.5%

Community-based organization in HIV/AIDS prevention and control 9 ___________________________________________________________________ by medical professionals (60). With the greater availability of rapid HIV tests in local primary health care centers and mobile clinics, trained birth attendants could be instrumental in overseeing the provision and administration of antiretroviral drugs to HIV-infected mothers and their newborn infants. They may also counsel women and their partners in HIV risk reduction (61). Ethiopian traditional birth attendants who are trained and serve with kebele health services, may prevent HIV infection during childbirth, counsel and refer patients to hospitals, and control traditional harmful practices (15). A national AIDS training campaign directed at upgrading 4,000 TBAs in 10 regions in the early 1990s permitted the dissemination of educational messages through informal mutual aid organizations, including iddir, mehaber and senbete (62). Unfortunately, this project was not evaluated, constituting a missed opportunity to study the important linkage between health institutions and the community. Another 1,700 TBAs and CHAs were trained between 1998/1998 and 2000/2001 but nothing is known about their activities (45). A study of 30 TBAs in Jimma revealed certain misconceptions about HIV transmission and lack of precautions while working with HIV-infected persons which would have to be overcome through refresher courses (63). Adequate and relevant training of TBAs, with periodic refresher courses will be necessary all the more since the great majority of them are untrained in modern medical practices (44). Moreover, the problem of confidentiality in local health workers during HIV counseling and testing, reported from Cameroon (64) will need to be addressed before TBAs may be used effectively and safely in prevention and care programs. Community Health Agents: Little is known about the current employment situation of CHA front line health workers, who have also been identified as potential agents in HIV/AIDS

prevention and care (15). Many of the 11,788 CHAs reported by the Ministry of Health for 1988-89 were inactive (51) and the employment status of the 3,030 CHAs trained between 1998/89 and 2000/2001 (45,65) is not known. Similarly, aside from a peer education pilot project in 1990 in Nazareth, where CHAs trained commercial sex workers in 1990, little is known about the involvement of CHAs in HIV prevention (66). Program deficiencies, largely due to lack of remuneration of CHAs by their communities, refresher courses and supervision, impeded their functionality in the past and resulted in high turnover (49,67,68). CHAs may be particularly effective in teaching men facts about HIV/AIDS and the concept and need for behavioral changes. Health Extension Workers: The Ministry of Health has been launching a preventive health care extension program in October 2002 in 100 kebeles in four states (69). The health extension workers carrying out this program in rural areas are a new type of community health worker selected from high school students and graduates speaking the local language. They have been trained in basic primary health care activities (environmental sanitation, domestic water supply, latrine construction, solid waste disposal, personal hygiene, food safety, family health, communicable diseases and first aid) and in HIV/AIDS prevention and care (70). The criteria for their employment are: completion of grade 10 or 12, knowledge of the local language, and a 50% female quota (71) as well as their salaried status promise to increase their success in providing rural communities with more sustainable basic health services than the CHAs. This may be possible especially if the issues of technical support, refresher courses and supervision are addressed. Community-based Reproductive Health (CBRH) agents: CBRH agents are unpaid volunteers trained and employed within the Essential Services for Health in Ethiopia (ESHE) Program that was launched by three

10 Ethiop.J.Health Dev. ________________________________________________________________________________ NGOs with USAID support in 1995 to initially provide contraceptive information, distribute condoms and oral contraceptives, and refer patients. More or less similar forms of agents have also been trained and deployed in the rural areas of the country. The German Development Cooperation (GTZ) used to support such agents in Amhara and the FGAE was also involved in training and curriculum development activities for the same category of agents. They have played a significant role in the sharp increase in the number of new acceptors of contraceptive services between 1990 and 2001 (27). By late 2001, 17 NGOs and faith-based organizations employed CBRH agents in providing a relatively high quality reproductive health services, family planning and STI/HIV/AIDS in 54 weredas and 29 zones nationwide. CBRH agents were identified as frontline health workers with the strongest community base. An integrated refresher course, designed for CBRH agents and other frontline workers to upgrade their PHC skills, had a positive impact on service delivery. These periodic training courses cover MCH, IES, family planning, STI/HIV/AIDS, TB, leprosy and malaria. By addressing the long neglected periodic training needs and providing technical support by specialized NGOs, these courses promote longer term employment of these health workers (30). Knowledge and practice levels surrounding family planning, antenatal and postnatal attendance and HIV/AIDS prevention were significantly higher in the kebeles included in the CBRH project than in those not included (72). Similarly, use of family planning services was higher in kebeles in Eastern Shewa Zone with current community-based services than in those which had provided these services earlier and those without community services (73). Nevertheless, high CBRH agent attrition rates remained a problem, largely due to their unpaid status, underscoring the difficulty of effectively employing large numbers of frontline health workers under a limited budget. Another deficiency that needs to be addressed is the

gender imbalance of CBRH agents, as 77% of them are men and only 23% women, and all supervisors are men. While the predominant role of males in contraceptive decision making requires a strong contraceptive promotion program addressed at males, the contraceptive and decision making needs of females also need to be met, preferably by female CBRH agents. Attempts are being made to address the gender imbalance in view of the large female AIDS population and their need for special services (30,72,74). The ESHE Program recommended that two NGOs develop CBRH models focused on meeting unmet demand for reproductive services at the community level during the second phase of the program. This should include identifying additional services CBRH agents may provide. Due to their ability to fill gaps in primary health services of rural communities and in providing accurate statistics needed for project management and evaluation, it was recommended that CBRH agents be employed in more zones and communities (30,75). Womens’ Associations: The need for active women participation in kebele councils and committees (including the AIDS committees), along with changes in attitudes facilitating greater female representation is increasingly expressed. Similarly, women’s associations can make a significant contribution to and benefit from essential political and economic participation of women. Through these associations women may be able to gain access to technical and credit services that can empower them, and to HIV/AIDS services. This relationship can also enable women to advocate against traditional harmful practices, including violence against women, and fight for gender equity and the rights of other women. By serving on kebele AIDS committees, women can also facilitate the planning and implementation of gender-sensitive patient care and support services and IEC activities,

Community-based organization in HIV/AIDS prevention and control 11 ___________________________________________________________________ including the need for STI management in women (30,76). Another women’s association, the Ethiopian Women Anti-HIV/AIDS Association, is reportedly intensifying its efforts in IEC activities. By 2001 the association had provided HIV/AIDS awareness raising orientation through house-to-house visits to about 800,000 people in Wereda One in Addis Ababa and plans to extend its program nation-wide (77). Youth Associations: Youth associations and other youth groups with adequate guidance and support can play a major role in IEC activities and peer education among youth in rural areas, where most children are out of school. In addition to their traditional base in the kebele, youth associations may work through religious organizations and the schools. Providing technical support to youth organizations in project conceptualization and design is critical to the success of programs (78). Hard-to-reach vulnerable youths who can benefit from peer education are street children (79), whose numbers are swelled by AIDS orphans. These orphans, which are expected to reach an estimated 2.1 million by 2014, are still relatively neglected by relatives, neighbors, health services and schools. Recognizing that failure to provide necessary assistance would have a severe social and economic impact on society, at least three indigenous NGOs supporting AIDS orphans have been formed in Addis Ababa, with branches in other towns (80,81). While street children and orphans can contribute little to anti-HIV/AIDS efforts beyond peer education, advocacy and behavioral change facilitated by the use of VCT services, student groups have worked directly with the Gojjam Anti-Malaria Association and the Amhara HIV/AIDS Prevention and Control Secretariat in anti-malaria and anti-HIV/AIDS campaigns. More than 2,000 students spent their summer vacation educating nearly 600,000 people on the transmission and prevention of HIV/AIDS and malaria (82).

Similarly, a first-ever forum organized by teenagers aimed at providing a venue to discuss among peers HIV/AIDS-related problems they face was sponsored by UNICEF in Addis Ababa. The participating students from 15 schools are planning to draw up recommendations on how to motivate young people to avoid risky behavior and to prepare an action plan and to organize these forums as a regular event (83). The art education project LIFESIGNS, set up to operate through community-based youth clubs, was started in Adwa and Axum towns with the objective of peer educating primarily illiterate rural villagers. By using public mural painting, theatre, song, plays and silk screening as well as public meetings, the groups educate the public about the epidemic, social stigmas and myths regarding the virus, condom use and HIV testing (84). Anti-AIDS clubs and the schools: The education sector has been criticized for not developing a policy dealing with the impact of the epidemic, for failing to include HIV/AIDS information and skill training in the curriculum as well as preparing guidelines and training for teachers (85). Youth-oriented programs that have proven effective elsewhere in Africa involved national strategies, not just projects, as well as supportive communities and parents. They facilitated individual behavior change and national leadership, AIDS education in schools and access to condoms, VCT and employment (86). The cultural disinclination of Ethiopian parents to discuss HIV/AIDS at the family level curtails effective discussions of sexuality and puberty issues with their children (87), although parents commonly give advice. The utilization of teachers in health education topics aimed at HIV/AIDS prevention has not been seriously considered although they have been effective in teaching primary health principles in pilot projects (88). The Ministry of Education, in collaboration with the Ministry of Health, started an in-

12 Ethiop.J.Health Dev. ________________________________________________________________________________ school education program in the early 1990s to train students as peer educators with a prevention objective. Between 1998/89 and 2000/01, the Ministry of Health organized between 1,034 and 1,340 anti-AIDS clubs annually (45,65,89). This program has not been evaluated but the popularity and impact of the anti-AIDS clubs appear to be limited, as indicated by the discussions by one of the authors (HK) with one club and students from two other high schools in Addis Ababa which revealed student participation rates between 0.5% and 2.5%. Higher participation rates were reported from three high schools in Gondar, where anti-AIDS club members trained as part of a university pilot program disseminated information on HIV transmission, sexuality and care of PLWHA to their respective classes (90). Major constraints in developing effective anti-AIDS clubs, especially in rural areas, the low national high school enrollment rates (12.5% of males and 10.4% of females) (44) and the failure to obtain combined parent, school administration and student involvement and support. Radio Programs, street theater and traditional plays: Outside the school environment, one of the few opportunities for Ethiopian children and adolescents to learn about HIV/AIDS risk and prevention are recently developed radio programs and occasional street theater or circus. The radio program launched in June 2002, featuring two youth-oriented serial dramas based on the successful Sabido method and developed after intensive formative research in Ethiopian urban and rural areas is particularly promising (91). Its interactive nature of the Modeling and Reinforcement to Combat HIV (MARCH) approach stimulates audiences to respond to the drama, facilitating adoption and reinforcement of positive behavior change at the community level (92). This may be achieved by interpersonal and community communication networks encouraging and reinforcing attention to the drama, by endorsing and supporting the

goals and behaviors of specific characters in the drama, by distributing health-related materials, by linking individuals to community services, and by advocating for other community-level changes (93). In this way the nationally broadcast serial drama can become a community project. Nevertheless, although the design of the drama and the characters were aimed at both urban and rural consumption, only about 8% of rural and 57% of urban households had radios in 1998 (94) and language barriers also limit the impact of this program. This suggests that traditional media such as folk plays that are culture-specific should be considered for populations speaking languages other than Amharic or Oromiffa, the languages used in the radio serial dramas. One of the few community-based or travelling entertainment media with an HIV/AIDS agenda have been circuses organized by NGOs, including one based in Awassa town (95). At least one indigenous NGO founded by PLWHA in Addis Ababa has begun to produce dramas based on the life histories of HIV infected people that are presented locally and disseminated though newspapers and brochures (96). Faith-based Organizations: A recent analysis of the significant decline of both multiple partnering by Ugandan adults and HIV prevalence in Uganda indicates that teaching abstinence among youths and monogamy in combination with condom use were major factors in this achievement. It has been estimated that the Ugandan prevention model has the potential for reducing the AIDS rate in Africa's worst stricken countries by 80% (97). The widely advertised government ABC slogan (abstinence, be faithful and condoms) to prevent AIDS is a guide of the current prevention programs of the Ethiopian Orthodox Church, the Islamic Supreme Council and other faith-based organizations. However, congregations and their leaders remain largely opposed to condom use. Leaders of Christian and Moslem religious institutions in Ethiopia

Community-based organization in HIV/AIDS prevention and control 13 ___________________________________________________________________ are respected and trusted and have large numbers of followers, making them particularly suitable to address the silence, stigma, discrimination and misinformation problems. Although the Ethiopian religious institutions had first initiated prevention activities on a small scale in the late 1980s, including a Protestant church which started to implement a prevention and control program as early as 1988 (98), it was not until the late 1990s that most of them developed structured and extensive anti-AIDS programs. In 1998 the Ethiopian Orthodox Church began to train its 500,000 priests, as well as preachers and Sunday school students on HIV/AIDS to become communicators and counselors (99,100). The outcomes of an interdenominational training program involving Orthodox Christian, Catholic, Protestant and Moslem leaders in HIV/AIDS epidemiology, prevention, counseling, care and support were used to revise training and counseling materials and programs (101). The program has been considered successful overall, although the sensitivity of the subjects of HIV transmission and condom use and traditions prohibiting religious leaders to discuss sexuality with their congregations has impeded its implementation. A pilot prevention study of 71 Orthodox Christian and Moslem leaders in Jimma Zone reported positive behavioral changes after the intervention, including reduced alcohol consumption, promiscuity and the use of sharp instruments, more open discussion about HIV/AIDS, and greater church and mosque attendance. Willingness to discuss this health problem outside their institutions and the relatively greater acceptance of religious leaders as anti-AIDS advocates in rural areas than towns increased their effectiveness in most communities (27,102). The same investigators recommended that intensive prevention programs be developed throughout the country but pointed out the lack of financial support and training curriculum, as well as the persistence

of cultural constraints, also reported by other studies (103). The fact that only 7% of a representative sample of more than 15,000 men and women nation-wide asked about the source of their information on HIV/AIDS named their religious leaders (44) indicates that faith-based organizations have not yet captured the demand for their services in rural areas. Mission churches in Ethiopia and elsewhere in sub-Sahara Africa also increasingly recognize the need for their involvement in HIV/AIDS prevention and control (104). According to regional health bureau officials, some missionary churches in SNNPR (in Wolaita Zone) have stated to enforce pre-marital HIV screening for those who come to them for marriage ceremonies. Similarly, pre-marital HIV tests have been recommended by the Woman’s Affairs Office of Guraghe Zone because of the high migration rate of Guraghe men and an estimated 100,000 HIV infections in that zone (105). The Ethiopian Orthodox Church is increasingly supporting care and support activities by placing AIDS orphans with extended families and friends. Traditional familial care arrangements are being overburdened due to the sharp increase in the number of orphans so that faith-based, government, and charity organizations, as well as NGOs are increasingly providing orphanages and financial help (80,106). CDC and USAID are assisting several faith-based care and support activities and organizations as part of the Global AIDS Program (GAP) under the U.S. government “Life Initiative” program (12). Iddir and other mutual assistance organizations: Traditional mutual assistance organizations may provide a model for closer health services/community interaction, including expansion of rural health insurance schemes, sustainable patient care and participatory HIV/AIDS prevention. The iddir insurance scheme in particular promises to

14 Ethiop.J.Health Dev. ________________________________________________________________________________ contribute to providing a more enabling environment. They are characterized by high commitment, participation, constructive dialog and cooperation of members and had been engaged in security, development issues and social issues long before the formation of the kebele in the 1970s. Most researchers agree that iddir may function as a springboard for social and political development in Ethiopia. Iddir cuts across ethnic, religious and occupational boundaries and has great potential for the social and political development of the country (107) and as “a potentially effective institutional framework for devising community-based health insurance as an alternative mechanism for health care financing in rural Ethiopia” (108). In Arba Minch, Nazareth and Yirgalem, between 79% and 98% of 200 randomly selected households in each town were willing to join a possible iddir-based health insurance scheme (109). Another study by the same authors of 1,000 households randomly selected in 25 weredas in the former Shewa Region showed that 92% of the respondents reportedly participated in iddir and 21% of the iddir give assistance to household members. The types of assistance provided included contribution of money and food items, transporting of the sick to nearby health facilities or to where transport is accessible and labor contributions to cover farm activities of the sick (110). According to the 1999/2000 Welfare Monitoring Survey, however, both iddir and equb were relatively unimportant sources of financial help during emergencies in both rural and urban areas (111). The low coverage of the Ethiopian population by private health insurance (less than 0.1%) (112) indicates the great need for health care coverage. Some iddir in four regions in central and southern Ethiopia help their members with transport costs for visits to clinics and to teach about AIDS (26). Iddir leaders, together with teachers and religious leaders, were highly supportive and willing to supervise TB patient care in the home (113), indicating their possible utilization in home-based care of AIDS patients as well. But the

expansion of iddir programs would require substantial changes in contribution levels, payment rates for AIDS cases and probably considerable government assistance (112), especially in view of the financial crisis many iddir are facing as a result of the AIDS epidemic and the need for HIV/AIDS program inputs. A recent interview survey among iddir leaders in Addis Ababa revealed that increasing mortality due to HIV/AIDS has caused financial strain on these institutions prompting them to embark on various activities directed to the prevention and control of the disease (26). The suitability of another common mutual assistance organization, the equb, an efficient and flexible savings institution benefiting particularly women and lower income households (114), has not been evaluated for partnering with HIV/AIDS stakeholders. Also the mehaber and debo mutual help associations in rural areas, recommended by the government as potential organizations in the fight against HIV/AIDS (15,26), have not been studied. Home-based Care: The accelerated increase of AIDS cases in Ethiopia, the inadequacy of the health services system, hospital bed occupancy rates of 50% and higher, and difficulties of reaching all organizations and informal groups taking care of AIDS patients point to the urgency for national coordination to foster patient care and psychosocial support in the home. The few existing home-based care services, provided by a wide range of health professionals, family members and volunteers from women and youth groups do not meet expectations and needs (115,116), although the situation is improving. Innovative approaches to care and support for AIDS patients and their families within extended family structures and social networks have been proven to be useful in other African countries. Impediments to their wider use include limited participation of male volunteers, high levels of stigma attached to home-based care, lack of drugs for treatment of opportunistic infections, lack of referral

Community-based organization in HIV/AIDS prevention and control 15 ___________________________________________________________________ systems, poverty and lack of financial resources and technical support (117). Although not cheap, home-based care tends to be less expensive than institutional care and may also be appropriate for multiple chronic and terminal illnesses. Strong extended family ties and community commitment are major components in viable home-based programs that not only include people living with HIV/AIDS but also orphans and vulnerable children. Neighbor women, volunteers from faith-based organizations and private organizations, groups of PLWHA, the kebele and NGOs support through food and materials have been major actors in home-based care in Ethiopia (116). A study carried out in Ethiopia in the early 1990s, when social stigma of HIV/AIDS was particularly pronounced, revealed a general preference for hospitalization of AIDS patients due to the perceived danger to care givers (118). In 2000, about half of all respondents in the Demographic and Health Survey, with twice as many in urban than rural areas and more highly educated people, declared their willingness to care for an AIDS afflicted relative in the home (44). A recent WHO collaborative study summarizing information on 8 of 20 projects in different communities reported that caregivers including physicians, nurses, neighbors (mostly females), health assistants, CHAs, TBAs, volunteers from womens’ and youth groups and family members, benefited more than 1,300 AIDS cases. Although these activities were well received by patients and resulted in decreased social stigma in the project areas, they fell short of meeting basic needs, including food, material requirements and treatment of infections (115). If these deficiencies can be addressed, this and similar projects described below may serve as models for home-based care in Ethiopia. Technical support by OSSA (Organization for Social Services for AIDS), the health services and NGOs may facilitate the training and caring/treatment

activities but will inevitably increase costs. Cost estimates from other African countries showing the cost of home care to be in the thousands of dollars for each HIV infection prevented or several hundred dollars per DALY (disability-adjusted life-year) gained (119) put the emphasis on low-cost, community-based services if home-based programs are to be sustainable in Ethiopia. The proposal to train community-based reproductive health agents who can in turn train relatives taking care of people living with AIDS may help to bridge the technical support gap between health professionals and untrained primary care givers (120). The Ministry of Health developed guidelines for community- and home-based care in 1996 and the introduction of community- and home-based care (CHBC) has also been given due recognition in the HIV/AIDS Policy. Encouraging psychosocial, economic and medical support for people living with HIV/AIDS and affected members through eliciting established patient's familial and social networks are among the strategies specified in the HIV/AIDS Policy (17). Lack of resources and the personal, socially sensitive nature of the support and care giving process in an environment of persisting stigma and discrimination, fear put an emphasis on family and volunteer support and care. Recently, the MOH has been revising these guidelines with the objective of using them as a reference for the provision of CHBC at all levels and its expansion in a manner that permits basic approaches to be kept within the limits of standard care and support while maintaining flexibility to suit local conditions. It endeavors to bring care and support to PLWHA who develop signs and symptoms of illnesses related to HIV infection, and also addresses the needs of the families affected. Among the areas of the CHBC program in the new guidelines are: family and community mobilization, establishing an effective two-way

16 Ethiop.J.Health Dev. ________________________________________________________________________________ referral system at all levels that can contribute to the provision of quality patient care, and training and orientation of various groups that would eventually be involved in the CHBC implementation process. The management and coordination of the CHBC activities are planned to be carried out through the existing and the yet to be established AIDS Councils all the way from the central to the kebele levels (121,122). The key to successful home-based care at the community and wereda levels may be the development of community-initiated care that freely develops in an enabling environment free of fear and stigma and where PLWHA and local organizations can play both care/support and advocacy roles. This can promote a sense of community ownership of the initiatives to be developed and thus increase the likelihood that they will be designed according to local needs. More information is needed about what different communities and cultural groups perceive as appropriate care in order to maximize the benefits of care for AIDS patients. A in-depth study of the meaning of caring and its important elements to the Nuer people of western Ethiopia provided valuable insights into the types of care desired and the values of this cultural group. Being cared for by a kin and having good relations with the caregiver were considered among the most important qualities of care. This study may serve as a model for systematically describing and analyzing differences in value orientations among other cultural groups (123). The recently formed TB clubs and TB mehabers, were instrumental in increasing drug compliance rates (124,125). Together with greater involvement of PLWHA, described below, these TB groups indicate a trend toward disclosure, patient activism and optimizing patient care within the family setting. The need for a focus on meeting patient needs within the home environment is also indicated by studies in Brazil showing that by far the most stressful events in AIDS patient lives are not associated

directly with the disease but with family and partner relations (126). People Living With HIV/AIDS: PLWHA are not only granted legal protection under the new Ethiopian civil code and more generally under the Universal Declaration of Human Rights (127) but are also encouraged by the HIV/AIDS Policy to participate in IEC activities. In Uganda, Senegal and Zambia strong government leadership, communities and donors encouraged PLWHA to participate in HIV/AIDS prevention and in Ethiopia associations are increasingly being formed, some of them by PLWHA. Most organizations have developed programs that include HIV/AIDS education and counseling using testimony, music, drama and songs (128). One indigenous NGO founded by PLWHA in Addis Ababa has begun to train community members, especially families of PLWHAs and neighbors, in home-based care in 5-day training courses that teach about skin care, wound management, protective measures and nutrition. This organization has also developed HIV/AIDS education, counseling and social support programs and advocates that PLWHA come forward to be helped. The cultural barrier for HIV-infected women to attend public places could be overcome by holding coffee ceremonies, where women can talk freely and have begun a peer education project with the collaboration of one kebele (96). Experiences from another PLWHA-founded group show that patients prefer to be cared for by people sharing the same problem (129). Another NGO in Addis Ababa formed a support group and trained care- givers of PLWA and orphans about HIV transmission and how to take care of themselves after they identified the type of support needed. This longitudinal program, which has operated in Addis Ababa for 11 years, was able to enhance the care for PLWA and their children (23). Still under-served are two particularly vulnerable groups-orphans and HIV-infected mothers, many of whom lack adequate care, psychosocial support and food,

Community-based organization in HIV/AIDS prevention and control 17 ___________________________________________________________________ shelter and clothing (80,129,130). The flight of many abandoned orphans to become street children (79) will require that this group of youths be included with orphans in the support programs designed to lower the impact of HIV/AIDS (12). In spite of the growing recognition of the importance of PLWHA in raising awareness of HIV/AIDS and the increasing participation of PLWHA and the community in preventive and mitigation activities, many issues remain to be addressed due to the persisting stigma against PLWHA and in the absence of operational research in Ethiopia. In particular, questions about the involvement of PLWHA in the delivery of prevention, care and support services and its effect on PLWHA and other persons affected by HIV/AIDS as well as the role of the community and health services in enhancing care/support activities need to be answered. Although apparently declining, discrimination continues in the form of ostracizing affected people and forcing them off their jobs, contributing to denial, high-risk behavior and exacerbating social and economic impacts of the epidemic (131). A four-country study (Burkina Faso, Zambia Ecuador and India) found that most PLWHA work as volunteers rather than professionals on an informal basis and that they are often marginalized within their organizations even though they can be cost-effective if properly trained. Major barriers to greater PLWHA involvement were the “judgmental and paternalistic attitudes” of professional health and social workers, gender inequalities, and lack of institutional will and policies to create opportunities for them. (132). Community Health Facilities: Local health facilities at all levels, from health posts to regional hospitals, can be both providers of VCT services and technical support bases for CBOs and programs. In rural areas the units of focus are the health post and the health station, where CHAs, TBAs and other primary health

workers trained in HIV/AIDS prevention provide the community health services. They may also serve on kebele AIDS committees and wereda HIV/AIDS councils, interact with other community organizations on prevention and care issues, and provide IEC, VCT family health and reproductive health services. The experiences of the first government health center in Ethiopia providing VCT services including anonymous and rapid tests is encouraging plans for their replication in other institutions (23). The priority given by the Second Five-Year Plan of the Health Sector (16) to disease prevention can benefit community-based organizations in several ways. Particularly the plan to expand health facilities to under-served and without facilities areas such as pastoralist areas, to upgrade and standardize the staffing, supplies and services of all levels of the health care system, to implement a “health extension package” to prevent HIV/AIDS, TB, STDs, and malaria at the village level and to strengthen and expand family health services can bring health services closer to under-served communities and result in the planned lowering of the front line health worker/population ratio. Moreover, plans to promote community participation in health care delivery and IEC programs can benefit community-based HIV/AIDS programs. A critical factor in effective health manpower development is the planned increase in female health workers (16), which has been proven to be difficult for social and cultural reasons in the past (30) Civil Society: Among civil society institutions, the Addis Ababa branch of the Ethiopian Red Cross has recently launched an anti-HIV/AIDS campaign to complement the national program. Young members were assigned to each wereda of the city to carry out door-to-door advocacy and counseling services. Since the extension of the organizational structure of the Addis Ababa branch of the Red Cross Society permits campaigns down to the wereda and school

18 Ethiop.J.Health Dev. ________________________________________________________________________________ levels (133), there may be opportunities for partnership with kebele-based organizations and anti-AIDS clubs. The Ethiopian Public Health Association has recently secured a grant from CDC for a project with the goal of improving public health practice and service delivery in the area of HIV/AIDS/STI/TB prevention and control in Ethiopia. The activities planned include coordinating training aimed at enhancing technical capacity in the areas of HIV/AIDS/STI and TB prevention and control; advocacy and IEC to increase the awareness of the public about these diseases; and facilitating operational and intervention studies that address priority health problems. Companies and Institutions: The Second Five-Year Plan of the Health Sector calls for the provision of health education services and technical advice in industries and institutions (16). Work-based reproductive health services administered through peer promoters have been implemented by the Family Guidance Association of Ethiopia in association with a NGO in a textile factory in Kombolcha town. Decrease by half of work days lost to leave before delivery and maternity due to unwanted pregnancy, sickness associated with pregnancy and delivery, and search for reproductive services reflects the success of providing these services on the job to normally hard-to-reach female factory workers (134). Other programs implemented by Ethiopian companies and institutions include the testing, counseling and treatment program of Ethiopian Airlines, the prevention program of the defense forces (37), the prevention, education, counseling and testing programs of the United Nations World Food Program’s truck drivers (135) and the Confederation of Ethiopian Trade Unions among factory workers in Wonji and Metahara sugar estates (136), and the awareness raising project of the Ethiopian Employers’ Federation (137).

Poverty Reduction Programs: Poverty alleviation holds considerable promise in HIV/AIDS prevention and control at the community level in Ethiopia due to widespread poverty and its role in promoting risk behavior. It is becoming increasingly evident that alternative income generating activities and economic self-sufficiency can reduce high-risk activities of commercial sex workers and also permit many women and children to obtain better education and life skills that are essential for socioeconomic progress, promotion of preventive behavior and poverty alleviation among PLWHAs and their families (138,139). In this regard, there is a feeling that out-of-school youth are engaged in high-risk behaviors not because of low awareness of the problem but largely out of desperation due to poverty, joblessness and lack of vision and hope. Conversely, poverty together with the associated gender inequality, environmental degradation, social conflict, lack of participation and civil unrest, are both barriers to these goals and factors in fueling the HIV/AIDS epidemic (140). An estimated 52% of Ethiopia is food insecure and mean food intake is 16% below the minimum accepted by the government (31). The fact that the majority of households in famine affected areas are dependent on food aid and cannot afford any type of health care during food crises (141) indicates the urgency for poverty alleviation. The Ethiopian government has made poverty reduction one of its main targets for the coming years developed a Strategy for Promoting Development and Poverty Reduction (111). Two poverty reduction programs in Ethiopia, the Ethiopian Social Rehabilitation and Development Fund (142) and the World Bank- and IMF-supported National Poverty Reduction Strategy (143), have a health component. Whereas the former organization constructed and equipped health stations and health centers, trained community projects committees and built capacity of communities and partner organizations (144), the latter is in the early stages of planning to support PLWHAs, groups

Community-based organization in HIV/AIDS prevention and control 19 ___________________________________________________________________ vulnerable to HIV infection and others affected by the HIV/AIDS epidemic. It is generally agreed that these and other poverty reduction programs will be most effective if they reduce not only absolute poverty but also address vulnerability and powerlessness (144). The reciprocal, interactive effect of HIV/AIDS and poverty is revealed by the impact of AIDS on family welfare, malnutrition and starvation in Africa through farm manpower reduction and increased expenditures on patient care and the care of surviving children (145,146). This effect is particularly pronounced in the areas growing labor-intensive crops such as teff and enset (147), which are the major staples in the areas of high population density rural Ethiopia. Agricultural Extension Workers: Agricultural extension workers have been recommended for deployment in IEC activities due to the nature of their work in rural areas where they are in frequent contact with populations who may not have other means of access to HIV/AIDS services (30). Especially the suggestion that they be employed in teaching farmers about HIV/AIDS within the setting of peasant associations (59) needs further consideration. As part of its partnership with the Multisectoral HIV/AIDS Strategic Plan, the Ministry of Agriculture is scheduled to train agricultural extension workers in HIV/AIDS prevention (15). The numbers of agricultural extension workers and their potential input in HIV/AIDS programs may be expected to increase with the government’s current expansion of the agricultural extension program as part of its emphasis on agriculture-led economic development in poverty reduction (111). Traditional Healers and Traditional medicine: In sub-Saharan Africa, traditional healers are increasingly participating in a wide range of activities related to HIV prevention and AIDS patient care and support, including community education, condom distribution, counseling, herbal treatment of opportunistic

infections, patient referral to modern health services, and home care and management of patients (148). Healers enjoy a high social status in their communities, and the cultural appropriateness of their treatment methods and materia medica are instrumental in their popularity to the point where many communities prefer their treatment of AIDS patients over that by the modern health services (149). Through training, many healers have been able to integrate biomedical concepts into their traditional healing systems, and it has been suggested that traditional healers may provide a critical link in the continuum of AIDS and STD patient care from hospital to home (148). According to the 1998 Welfare Monitoring Survey (94), 23.3% of rural and 11.2 % of urban residents had obtained traditional or self-treatment during the two months prior to the interview. These figures are only about half the usually reported prevalence of traditional treatment (150,151), indicating underreporting. The harsh treatment of traditional healers under the Derg regime discouraged their use, driving many of them underground. The current Health Policy promotes the use of traditional healers and the Multisectoral HIV/AIDS Strategic Plan calls for their training and support in HIV/AIDS prevention and in the control of harmful traditional practices that facilitate HIV transmission (15). This might include HIV counseling after training in view of their ability to significantly increase VCT services in southern Africa (148). Scarcity of modern health services in rural areas and their popularity may encourage traditional healers to fill this niche. Nevertheless, their effective and harmonious utilization in Ethiopia and other African countries may be feasible only after the role of traditional medicine in the health services and the standardization and regulation of healers’ practice within the context of national policies and the necessary collaboration with the Ethiopian biomedical community can be achieved (148,150,152). It is

20 Ethiop.J.Health Dev. ________________________________________________________________________________ unlikely that another area of traditional medicine, the development and use of plant medicines for HIV and opportunistic infections, will contribute to the control program in the short term. Even though the Traditional Medicine Department of the Ministry of Health has been testing potential anti-HIV plants since the late 1980s (153) and 6 Ethiopian medicinal plants with antiretroviral activity have recently been identified (154), their development into effective, marketable and affordable antiretroviral drugs may be possible only with considerable international support and even then probably not in the next few years. Discussion and Conclusion This review identified community-based organizations which have started HIV/AIDS activities or programs in HIV/AIDS prevention or AIDS patient care and support. Recent progress in raising awareness of HIV/AIDS in the population, changing attitudes and increased preventive behavior, together with administrative strengthening of the weredas and kebeles and the implementation of multi-sectoral HIV/AIDS Plan using a preventive approach are all conducive to the development of community-based organizations and their anti-HIV/AIDS programs. Prospects for their success may be relatively good in small towns and rural areas, where these organizations are most visible, their leaders highly respected and health services are least accessible, if the necessary awareness can be created locally and guidance and technical support be provided in a sustainable fashion. This review indicates that the relative effectiveness of different community-based organizations in different communities depends on many factors associated with individual organizations, their communities and collaborations with and support by other community or outside organizations. The kebele and their AIDS committees may function as a leading community-based institution and as a forum for discussion if they

can create an enabling environment for PLWHA and establish collaboration and networks with various other community organizations and weredas. The need for initiatives and partnerships to be community-enabling in terms of overcoming crippling social stigma, discrimination and fear and promoting an environment in which information dissemination on HIV/AIDS, advocacy for behavioral change and VCT, as well as disclosure of HIV status without fear of retribution cannot be overemphasized. The recent formation of care and support organizations by PLWHA and the advocacy by some womens’ and youth groups are important steps toward those goals. Similarly important will be the technical and financial support of community-based organizations, as specified in the Multi-sectoral Plan and the reduction in poverty. Iddirs and faith-based organizations may become strong partners in prevention, care and support activities if effective and sustainable iddirs can be formed in partnership with competent organizations that can provide information, leader training modules and counseling materials sensitively prepared and presented to congregations. The integration of traditional healers in anti-HIV/AIDS activities and programs will require technical training and regulation of their treatment practices. In addition, the specific areas of their involvement in different activities and cultural groups need to be identified to facilitate their collaboration with the health services and other partners. The potential contribution of TBAs and CHWs may also be limited in the near future, unless well known support constraints can be overcome. The new extension health agents and community-based reproductive health agents may prove to be more effective contributors if their deployment can benefit from the experience of utilizing TBAs and CBAs in primary health care. Similarly, Anti-AIDS clubs may become significant advocates for behavioral change and VCT in schools only if they are properly guided and supported in an

Community-based organization in HIV/AIDS prevention and control 21 ___________________________________________________________________ enabling, health promoting environment that includes school administrations, parents, students and society at large. These differences in potentiality point to the importance of understanding the history, function, goals, leadership, networking and support structure of individual organizations. The studies by Pankhurst and Haile Mariam (26) on the iddir can serve as a model in this regard, the pilot project by Surur and Kaba (27) as an effective approach to training religious leaders as managers of prevention campaigns and the study by Admassu (129) as a model to study PLWHA using the participatory approach. Both well proven and new approaches and tools that permit communities to initiate, manage, and take responsibility for HIV/AIDS prevention, care and treatment programs should be employed in anti-HIV/AIDS programs in communities. In addition to the formation of partnerships among community-based organizations, such as iddir and kebeles (26), the recently implemented health extension worker (70), community- and home-based care (CHBC), the CDCASTAD peer-based technical assistance (56), and the radio serial drama programs (91), as well as the integration of poverty alleviation in HIV/AIDS activities (138) are particularly promising. Because of economic, cultural, manpower and infrastructure constraints which are delaying the implementation and coordination of regional, wereda and kebele-supported initiatives in many rural communities, the promotion and participation of organizations, health workers, volunteers and other capacity and resources already on the ground obtains new urgency. Particularly faith-based organizations, iddirs, equbs, women’s, youth and other associations, PLWHAs, agricultural extension workers and family members may play major roles in awareness building and IEC activities. For women, youth and PLWHA

associations to successfully advocate against stigma and gender inequities, community support will be crucial. Promotion of IEC activities in market places during political and cultural events and development of traditional education and entertainment media may raise awareness levels among more isolated communities, although this requires further study. With the expansion of the prevention and control program, new opportunities for partnerships between sectoral organizations and community-based organizations that may benefit anti-HIV/AIDS efforts need to be explored. The Social Rehabilitation and Development Fund for example, by focusing on poor rural people and community-based and demand-driven programs, might form partnerships with kebeles, weredas and CDC/NASTAD towards integrated HIV/AIDS/poverty reduction programs. It has been recommended that collaboration between iddir and other local organizations, government agencies and NGOs may increase program effectiveness and sustainability of poverty alleviation programs (23). The formation of kebele iddirs (26) in the search for more effective and democratic organizations is a shining example of an innovative community-based organization. The cost-effectiveness of community-based organizations may be further increased by broadening their range of activities by integrating primary and preventive health services as well as multi-disease and health services programs including TB, STIs, malaria and reproductive health programs. The integrated approach, which has been developed furthest in the ESHE Project in SNNPR through the CBRH agent program, may also increase the utilization rate and the quality of primary and preventive care services and promote sustainability of frontline health workers (30).

22 Ethiop.J.Health Dev. ________________________________________________________________________________ Strong government support and commitment will be crucial in scaling up the few existing community-based prevention and patient care programs to a truly national multisectoral HIV/AIDS program by building on available models, starting with existing capacities and building them through learning by doing, by giving the highest priority to prevention, by promoting accountability and improving fiscal sustainability, among others. Mechanisms and operations that need to be considered in upscaling community programs have been described for Africa (156). Upscaling in Ethiopia was described as the need to “involve communities to own and take responsibility for their responses to the epidemic, and providing them with the programmes to support their actions” (157). Other issues that need to be considered include the difficulties of many NGOs to integrate their activities with those of other NGOs, the government and the communities, and the generally weak IEC methodologies and instruments that were often not appropriate for local needs and realities (115,158). The fact that NGOs with a strong record in Ethiopia have close associations with communities, especially marginalized people such as PLWHA and rural communities, and have demonstrated technical expertise and networking capacity (28) should facilitate the strengthening of NGO programs and linkages. The studies and projects reviewed here reveal a number of cross-cutting issues that will need to be addressed. First, a number of community-based organizations have shown considerable activism and initiatives in responding spontaneously to the HIV/AIDS problem in their communities. They include the indigenous NGOs founded by PLWHA, the iddir and some women’s and youth groups. This recent trend demonstrates that many affected people are not passive, incapacitated persons and an immediate danger to society but a resource by reaching out to other PLWHA to provide much

needed care and support thus contributing to breaking the stigma against HIV/AIDS. Identification of viable community-based organizations through operational research will be necessary for the country-wide implementation of the HIV/AIDS program and for NGOs and bilateral and multilateral donor programs to support their programs. Support for the behavior communication change, youth-related interventions, care and support, monitoring and management information strategies, surveillance, VCT services and STI strategies in particular is being provided by the collaborative program by CDC and USAID (159). Second, a number of innovative and apparently cost-effective multi-disease/health services and multi-organization approaches and programs are being developed. The CBRH agent, health extension worker, and the iddir kebele, iddir mehaber and poverty reduction programs are particularly promising. These broad programs have the additional advantage of maximizing scarce infrastructure and manpower resources, an issue that is becoming increasingly critical with the expansion of the anti-AIDS activities throughout the country, the increasing job mobility of professionals with ongoing privatization and their of attrition because of AIDS. Third, the need for sustainable community and outside assistance and support for community-based organizations to be viable may be met in part by a) the differential functionality of the local health facilities, kebele, CHAs, TBAs, CBRH agents, health extension workers, and youth and women’s groups and b) their integration into the communities they serve. Their involvement in primary health services and their knowledge of and acceptance by the community both facilitates their work as activists and social/health support agents and renders them suitable bridges between communities and outside health and social programs. Lessons learned earlier from the

Community-based organization in HIV/AIDS prevention and control 23 ___________________________________________________________________ deployment of CHAs and TBAs need to be considered in strengthening and empowering all community-based organizations to fully realize their potentials in contributing to the prevention and control of HIV/AIDS. Lastly, recent findings that community (health station) and preventive interventions were more cost-effective in reducing burden of disease (BOD) than hospital, health center based and curative interventions (160) suggest for greater emphasis on community-based organizations in HIV/AIDS control programs. Recommendations Pilot studies and community- and organization-based research need to be carried out to monitor and enhance the achievements of community-based organizations and to promote socially and culturally appropriate and motivated organizations and initiatives in different regions and communities that meet the needs, preferences and expectations of local populations. These studies should be interdisciplinary involving social and behavioral scientists as well as public health researchers with the objective of examining the origin, functions, leadership structure and motivation and capacity for participation in HIV/AIDS prevention and care/support activities. Operational research is also needed to facilitate the development of comprehensive guidelines and programs for an expanded response to the epidemic by community-based organizations and workers according to the HIV/AIDS Policy and the Multisectoral HIV/AIDS Strategic Strategy. Studies should focus on how to promote, strengthen, guide, network and coordinate, monitor, evaluate and upscale promising community-based organizations and intervention programs, how to create an environment toward maximum community participation in initiating and implementing new activities and programs, compliance with

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