AIDSTAR-One District Comprehensive Approach for HIV Prevention and Continuum of Care in Maharashtra, India


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Social stigma and fear impede HIV prevention, treatment, care, and support efforts. This case study examines how a collaboration led by the Avert Project implemented a District Comprehensive Approach (DCA) in two districts of Maharashtra, linking available public, private, and community resources to identify and reach people who are most vulnerable to HIV with comprehensive services.

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AIDSTAR-One District Comprehensive Approach for HIV Prevention and Continuum of Care in Maharashtra, India

  1. 1. AIDSTAR-One | CASE STUDY SERIES August 2012District Comprehensive Approachfor HIV Prevention and Continuumof Care in Maharashtra, India T he attempt to control the HIV epidemic is on exhibit in the city streets of the Aurangabad and Nagpur districts of Maharashtra. Looped red ribbons, symbols of this effort, adorn the walls and lamp posts, publicly expressing the district administration’s commitment to the prevention and control of HIV. Billboards, signposts, and prominent display ads on public Sarathi, Nagpur transport vehicles are designed to boost public awareness of the virus. But are government commitment and public outreachPrevention campaign in Nagpur. enough to make a positive impact on public and individual perceptions of HIV, when social stigma and fear turn the detection of vulnerability into a Herculean task? In these two districts, where HIV prevalence among specific most- at-risk populations is very high, the Avert Project in collaboration with the Government of Maharashtra, funded by the U.S. President’s Emergency Plan for AIDS Relief through the U.S. Agency for International Development, has launched a broad-based and participatory strategy for HIV prevention and management. This strategy, the District Comprehensive Approach (DCA), links available public, private, and community resources to identify and reach those who are most vulnerable to HIV with comprehensive services. The implementation of DCA in Aurangabad and Nagpur has led to increased access to and use of HIV services by target groups, and hasBy Molly Charles also enhanced community understanding of HIV and reduced stigma. This positive result, based on 1) a coordinated approach to synchronize services with needs and 2) a flexible networking process that supports outreach by diverse groups, sets the stage for expansion to otherAIDSTAR-OneJohn Snow, Inc. This publication was made possible through the support of the U.S. President’s1616 North Ft. Myer Drive, 16th Floor Emergency Plan for AIDS Relief (PEPFAR) through the U.S. Agency for InternationalArlington, VA 22209 USA Development under contract number GHH-I-00-07-00059-00, AIDS Support andTel.: +1 703-528-7474 Technical Assistance Resources (AIDSTAR-One) Project, Sector I, Task Order 1.Fax: +1 703-528-7480 Disclaimer: The author’s views expressed in this publication do not necessarily reflect the views of the States Agency for International Development or the United States Government.
  2. 2. AIDSTAR-One | CASE STUDY SERIESdistricts of Maharashtra and suggests implications As understanding of the epidemic increased,for HIV strategies at the national level. NACO’s strategies were adapted to address regional differences within their socioculturalThis case study looks at the inroads made by the context. The strategies that evolved includedDCA in creating an enabling environment for HIV the development of a conceptual framework thatmanagement in Aurangabad and Nagpur. It focuses covered program planning and implementation,on the process by which the DCA was created, monitoring and documentation, and epidemiologicalthe main operating mechanisms of the approach, surveillance through the National AIDS Controlits outcomes to date, and its potential role in HIV Programme (NACP), which is now in its third at the state level. The report coversthe two-year period (2009–2011) during which the NACO initially concentrated on reducing HIVAvert Society launched the DCA and functioned as incidence through centralized activities suchthe principal coordinator of DCA activities. as information, education, and communication campaigns to draw public attention to the issue,Information for this case study is based on field along with the establishment of a surveillanceobservations, review of documents and quantitative system to ensure safer blood supply. Later, NACOdata provided by the Avert Society, and interviews sought to decentralize programs to addressand guided interactions with professionals from regional differences, by handing over programthe Avert Society, the District AIDS Prevention implementation to state AIDS control societies.and Control Unit, integrated counseling and testingcenters (ICTCs), and antiretroviral treatment NACO’s decentralization efforts began with the(ART) centers. Other stakeholders who provided NACP Phase II (2001–2005), which was a moveinput included individuals working with networks toward participatory, comprehensive, and locallyof people living with HIV (PLHIV), targeted relevant programming, and was further expandedinterventions, and the Link Workers Scheme, as under the NACP Phase III (2006–2011; NACOwell as private practitioners, members of high-risk 2006). The government, on its part, strengthenedand vulnerable groups, and community leaders the role of local bodies of governance andworking at the village and district levels. nongovernment agencies through the medium of micro-level planning to facilitate joint implementationThis case study is limited due to the DCA being of programs by local and government agencies.operational for a period of two years prior to These efforts to combat HIV at the local level builtdocumentation, and because the study is based on an on experience gained while employing micro-levelexplorative, short-term, one-time field assessment. planning in other areas, such as education and sanitation (United Nations Children’s Fund 2003).Decentralization and HIV For the NACP Phase IV (beginning in mid-2012),Management in India NACO emphasizes further decentralization at the district and sub-district levels and greater focusThe number of PLHIV in India is estimated at 2.39 on high-risk, marginal, and hard-to-reach groupsmillion (The National AIDS Control Organisation (NACO 2011b). This strategy responds to NACO[NACO] 2011a). NACO, established in 1992, is the surveillance data that show widely varying levels ofIndian government agency charged with addressing incidence and vulnerability—classified “A” throughthe country’s HIV epidemic along with the National “D” in descending order of severity—at the districtCouncil for AIDS. level. To address HIV in high-incidence districts2 AIDSTAR-One | August 2012
  3. 3. AIDSTAR-One | CASE STUDY SERIES(including those in Maharashtra), the government Society and Mumbai District AIDS Control Societycreated District AIDS Prevention and Control to manage efforts to control and prevent HIV.Units that coordinate HIV control and preventionstrategies in “A” and “B” districts. Each District The local context—multiple risks:AIDS Prevention and Control Unit develops a Residents of the Nagpur and Aurangabad districtscomprehensive plan to synchronize and mainstream are vulnerable to communicable diseases, includingHIV-related activities within the existing public HIV, because of development dynamics andhealth care infrastructure and programs at the demographics. Both districts are industrialized,district and sub-district levels. with a well-developed transportation infrastructure, and are also favorite tourist spots. The consequentThe intention behind the DCA pilot was to establish “floating” population exposes the local communitiesa network linking public, private, and community- to several risk factors related to alcohol use andbased HIV services that District AIDS Prevention unsafe sexual activity. Women face multipleand Control Units could take over and manage once challenges, including gender-based discrimination,the pilot period ended. illiteracy, and restricted social mobility, which limit their ability to benefit from intervention programs. Female sex workers (FSW) and men who haveHIV and the District sex with men (MSM) face marginalization for their sexual behavior or orientation and theComprehensive Approach in discrimination is far greater towards FSWs andMaharashtra MSM who are economically and socially vulnerable. Launching the District ComprehensiveMaharashtra is among India’s high-prevalence Approach: The DCA began in 2009 as a pilotstates, with around half a million PLHIV and an initiative in both rural and urban areas of Nagpuradult HIV prevalence of 0.55 percent, compared and Aurangabad with the intention of subsequentto 0.31 percent overall in India in 2009 (see Table expansion to other districts in Maharashtra. The1). Of its 35 districts, 32 fall under category A, with project built on previous experience with micro-levelover one percent prevalence in antenatal care/ planning as well as evidence from several Africanprevention of parent-to-child transmission services countries showing that a comprehensive, integrated(NACO 2006). In 1998, the state government approach, such as that of the DCA, can play aestablished the Maharashtra State AIDS Control critical role in improving access to services and reducing stigma (Fullem 2003; Gulu District Local TABLE 1. ESTIMATED HIV SCENARIO, Government 2008). INDIA AND MAHARASHTRA India Maharashtra The Avert Society1 initially coordinated the activities PLHIV 2,395,442 419,789 in collaboration with various partner organizations Children living with HIV 104,450 23,831 including the Maharashtra State AIDS Control PLHIV on ART 380,314 90,484 PLHIV registered 1,253,498 261,442 1 The Avert Society was a 10-year project established in 2001 as part of a bilateral partnership between the Government of India and the U.S. Children on ART 23,854 6,301 Agency for International Development to complement the efforts of the AIDS-related deaths 172,041 36,771 Government of Maharashtra in addressing the HIV epidemic in the state. The Avert Society worked with state, community, and nongovernmental New infections 120,668 11,287 organizations, including PLHIV, to improve the availability and access toSource: NACO 2011A. care for vulnerable groups in both rural and urban areas. District Comprehensive Approach for HIV Prevention and Continuum of Care in Maharashtra, India 3
  4. 4. AIDSTAR-One | CASE STUDY SERIESSociety, the District AIDS Prevention and Control HIV services. This process gave a broad picture ofUnits in Nagpur and Aurangabad, local and the available human, community, institutional, andinternational intervention agencies in the two infrastructure resources that could play a role indistricts, and several networks for PLHIV. HIV management.A fundamental tenet of the DCA is that all projects 2. Mobilizing and strengthening local resourcesand initiatives collaboratively focus on the localcontext and conditions. The approach emphasizes Based on information from the status note andquality care that respects individual rights and data on HIV infection and comorbidities, the Avertprovides access to timely and caring services. Society and participating stakeholders identifiedFigure 1 shows the steps that the Avert Society gaps in public and private services and set out totook to set up the DCA for HIV; discussion of the strengthen existing programs for vulnerable groupssteps follows. through ongoing capacity building and service upgrades. The measures taken matched the local context. For example, to address the relationshipFigure 1. District Comprehensive Approach and HIV between alcohol use and inconsistent condom use, the Avert Society developed peer-based preventive measures that target individual concerns. The DCA also used link workers (outreach workers who are from the rural community that they work in) to mobilize and enhance local resources, especially in rural areas (see Box 1). 3. Identifying local risks Central to the success of the DCA is its ability to identify and address local vulnerability to HIV among individuals and groups, including PLHIV and those who are affected by HIV, such as families. Vulnerability implies susceptibility not only to HIV infection, but also to co-morbidities, effects on the family, mental health concerns, and stigma.1. Creating a coordinating platform for participatory HIV management In urban areas, nongovernmental organizations and networks for PLHIV play a significant roleThe Avert Society began by holding a district-level to address concerns of high-risk groups; in ruralcoordination meeting that brought together all the communities, the Link Workers Scheme is central.agencies working in the field of HIV to discussthe need for HIV management for the district as 4. Linking with existing servicesa whole, rather than through isolated programs.Developing a district-wide system required The practical implementation of DCA requiredconsensus from all partners involved. An important that diverse service provider agencies be linkedfirst step was the joint preparation of a “status to ensure access to various types of services,note” describing the resources available for HIV including those provided by ICTCs, drop-inmanagement in the district and identifying gaps in centers, community care centers, and centers for4 AIDSTAR-One | August 2012
  5. 5. AIDSTAR-One | CASE STUDY SERIESprevention of parent-to-child transmission. This management; the availability of these richerentailed dividing the district into smaller areas data greatly enhanced district-level programs forbased on coverage by different agencies, and prevention and care. A system was developedcreating informal systems for information sharing to for collection, collation, and dissemination offacilitate timely intervention and prevent duplication information to various agencies to provide aof services. The district agencies mainly focused on continuous stream of information on HIV servicesHIV prevention and community care, whereas the and gaps in capacity building and infrastructureAvert Society and other agencies handled capacity development. The system also allows for thebuilding and communication. transfer of both raw data and synthesized information from the district level to the state and5. Networking and mainstreaming of services national levels, which in turn provides evidence to shape state and national policy.The DCA laid the grounds for improved networkingand helped to mainstream services for HIVmanagement. This networking brought together The Avert Society’s initiatives to man-not only agencies like the Department of Health, age HIV: To address high prevalence within thewhich is directly concerned with HIV management, districts, the Avert Society focused DCA efforts onbut also other agencies such as those dealing with identifying, contacting, and providing services towelfare, social justice, and education. the most vulnerable and at-risk groups. In these districts, the target groups were FSWs, MSM, andData input from various actors in the DCA network migrants (and, in Nagpur, also truckers). Initiativesprovided information on multiple aspects of HIV included: BOX 1. LINK WORKERS AND THE DISTRICT COMPREHENSIVE APPROACH The Link Workers Scheme is a community-based project launched under NACP Phase III as a way of increasing the availability of HIV prevention, testing, treatment, and support services for high-risk groups based in rural areas where, according to surveillance, over half of India’s PLHIV live. In these settings, link workers, who know and have close ties to the community, are well placed to discuss sensitive information and intervene in an appropriate manner. In Aurangabad and Nagpur, the Avert Society supported the launch of the Link Workers Scheme. Trained village-based link workers, ideally one man and one woman per village, use local mapping to identify and establish contact with PLHIV and those at risk, promote condoms among these groups, help PLHIV connect with available services, and liaise with families and the community to help decrease stigma (NACO 2009). Within the DCA, link workers were central to improving access to and use of HIV services. They carried out a wide range of activities, including: • Sensitizing families and communities to the needs of PLHIV • Linking PLHIV to the appropriate services for testing, treatment, care, and support • Selecting youth from each community to serve as peer educators • Training 1,000 young people in local mapping and surveying • Providing youth and women the skills to plan for preventive intervention • Setting up village information centers, or Saiyukta, which provide diverse services to PLHIV and their families. District Comprehensive Approach for HIV Prevention and Continuum of Care in Maharashtra, India 5
  6. 6. AIDSTAR-One | CASE STUDY SERIES• Developing community-based and peer-led Society used several different measures to address initiatives to cover high-risk groups, and providing the unique needs of its priority populations based services to them in towns and cities to the point on the specific characteristics of the high-risk of saturation. In semi-urban and peripheral groups in each locality. areas, nongovernmental and community-based organizations played an active role in service Female sex workers: In Nagpur, the Avert provision. Society targeted brothel-based and non–brothel- based sex workers. In Nagpur, brothel-based FSWs• Providing mobile testing services in select are often illiterate single women who have come locations for high-risk groups. from other states2 or from distant places within Maharashtra. The women enter the profession to• Setting up the Link Workers Scheme for HIV add to their family income and subsequently find management at the village level, reaching 100 few other options open. In Aurangabad, the DCA villages per district. targeted FSWs, who are generally non-brothel based, married, and over the age of 30, and see• Mainstreaming HIV management in all sex work as an additional source of family income. government departments to link PLHIV and These women stress anonymity to safeguard their children with various government welfare their family life. However, this arrangement may schemes. interfere with safe sex practice; because of power imbalances and the fear of detection it may be• Setting up community care centers, supported difficult for a wife to keep condoms close at hand by the Karnataka Health Promotion Trust with and to insist that her husband use condoms. funds from the Global Fund to Fight AIDS, Tuberculosis and Malaria, to facilitate care for Increasing awareness about communicable PLHIV, treatment for adverse reactions to ART diseases, especially sexually transmitted infections medication, and support for psychosocial needs. (STIs), is crucial to reduce vulnerability to HIV. Nearly half (45 percent) of FSWs are unaware of• Setting up a drop-in center focusing on concerns signs and symptoms associated with STIs, and of PLHIV within the dynamics of family and even those who are aware of STIs have limited community. knowledge. Principles of behavior modification call for attitudinal change along with improvedThe DCA also made use of other services: ART knowledge. Despite awareness about HIV andcenters in each district along with link ART centers testing services, the utilization of ICTC services(rural ART care centers that are linked to major ART was initially low at 28 percent (Avert Society 2008).centers: five in Nagpur and four in Aurangabad); 21 To change the situation, the Avert Society createdICTCs; 29 primary health centers with round-the- an enabling environment by mobilizing outreachclock service; private/public partnership ICTCs (14 workers, counselors, and link workers within thein Nagpur and 2 in Aurangabad); and community public health care system, while also buildingcare centers. awareness and focusing on attitudinal change to ensure informed decision-making by FSWs. InThe Program Areas 2010, the situation changed and utilization of ICTC 2 Field data from key informants indicated there are a lot of women whoThe DCA estimated the population of high-risk have come from Northern States to make a living from brothel-basedgroups to be reached (see Table 2). The Avert work.6 AIDSTAR-One | August 2012
  7. 7. AIDSTAR-One | CASE STUDY SERIESservices increased to 49 percent among referrals members of the MSM community. The peer-basedmade for 3,440 FSWs in Augrangabad. initiative focused on addressing risk perception and the use of condoms. Peers can help MSM haveMen who have sex with men: MSM are safer sex by providing a rational assessment ofsocially marginalized and discriminated against risks, as well as information on tests and testingboth in Nagpur and Aurangabad. Many live double facilities for STIs and HIV.lives—one as part of the MSM community, andanother as part of a family that is unaware of their Migrants: The migrant population comprisessexual orientation. This is a mobile population; mostly contractual laborers who offer their servicesaround 70 percent of MSM interviewed travel on a to established enterprises and loosely formedregular basis. Furthermore, a significant proportion contractual ventures in the district. Most migrantsof MSM surveyed under the Behavioral Surveillance come from other states and many work in hardSurvey reported their first sexual experience was labor because there are not many local takers.forced (Avert Society 2010a; 2010b). This suggestsconcerns with regard to human rights violation Many situational factors make migrants vulnerableand safe sex for this population. Mobilizing MSM to HIV infection. Isolation may drive some menthemselves as human resources is difficult because into temporary MSM relationships or sex with aof their fear of being stigmatized if they reveal their FSW. Migrants often work in underdeveloped areassexual orientation, though they are willing to offer lacking even basic amenities, and personal hygienesupport from behind the scenes. and sanitation are issues of concern, especially in drought-prone areas. The harsh work patternTo address the concerns of this population, of migrants, which allows minimum leisure time,the DCA focused on increasing awareness of requires that all intervention activities for this groupthe challenges that MSM face—for example, adopt a holistic approach that recognizes theirinsensitivity within the health care system—and needs and limitations. In Aurangabad and Nagpur,helped orient professionals and lay persons to the DCA developed mobile health care services basedneeds and dynamics of groups with nontraditional on the understanding that migrants would not wantsexual orientations. Peer-based interventions to lose their daily income by traveling long distancesplayed a central role, especially in reaching hidden to seek HIV testing and other health services. TABLE 2. HIGH-RISK GROUPS TARGETED BY THE DISTRICT COMPREHENSIVE APPROACH IN AURANGABAD AND NAGPUR* Aurangabad Aurangabad Nagpur target Nagpur population target population population reached population reached with with services services FSWs 3,735 3,440 7,057 5,415 MSM† 425 951 670 1,353 Migrants 37,842 24,733 80,025 66,166 Truckers 40,000 (Nagpur only)‡* Data for population reached with services is for the period 2010–2011, provided by the Avert Society.† Estimation for the population of MSM in both Nagpur and Aurangabad is low as MSM were initially reluctant to disclose their sexual orientation. Over time and through theparticipatory mapping exercise, good rapport was increased, facilitating identification and interaction with a larger number of the MSM population.‡ This total represents the number of truckers targeted by several initiatives; Avert’s target was 10,000. District Comprehensive Approach for HIV Prevention and Continuum of Care in Maharashtra, India 7
  8. 8. AIDSTAR-One | CASE STUDY SERIESA Brief Overview of Changes The number of individuals from all high-risk groups in Nagpur (FSWs, MSM, migrants, and truckers)Achieved who received HIV tests increased from 221 (in 2007, before the implementation of the DCA) toThe DCA set ambitious targets for reaching key 17,879 in 2010. Disaggregation of these overallhigh-risk groups in Aurangabad and Nagpur. figures shows a clear increase in utilization of ICTCBecause the initiative began only in 2009 and services across subgroups—among FSWs, fortook some time to achieve full implementation, example, use of ICTCs increased from 235 in 2009it is difficult to track its full impact. However, to 4,512 in 2010.Avert Society staff reported that they had seensignificant improvements in coverage and service As indicated previously, link workers were central touse beginning in the second year (2010–2011). increased use of services in nonurban areas. TableHighlights of major impacts are included here. 3 shows referrals to and use of HIV testing services by specific groups in rural areas of Nagpur.3Covering vulnerable populations: NACPPhase III focused on the need for targeted Importantly, the utilization of services for STIs alsointerventions to identify hidden members within increased among vulnerable and high-risk groups,high-risk groups, bridge populations such as as shown in Table 4.migrants, and women exposed to HIV throughthe risk-taking behavior of their partners. The Data for Nagpur on the utilization of testing servicesDCA facilitated access to rural populations for prevention of parent-to-child transmissionthat are often inadequately covered through among women who received counseling shows andistrict-level programming, largely through the increase from 81.3 percent to 91.33 percent in 2010.Link Workers Scheme. To ensure continuity ofcoverage, link workers formed 108 Red Ribbon Other supportive services: The DCACenters (HIV prevention centers) in Nagpur facilitated care of PLHIV by making diverseand 100 in Aurangabad, and identified over services available and accessible through drop-in1,000 young people in each district for training centers, community care centers, and ART peer educators. To ensure quality of care Services provided include identification of newin the implementation of the DCA, the Avert HIV infections, counseling for PLHIV, facilitatingSociety focused on increasing the availability and access to and utilization of ART care and treatmentaccessibility of services—for example, by extending for co-morbidities, and strengthening home-basedhours and providing mobile testing units—and on care along with social support structures withincreating a supportive environment within health the community. Prior to 2009 in Aurangabad, nocare institutions or units. individuals from high-risk groups had been linked to ART care when they tested positive, but duringUtilization of clinical services and HIV 2010 to 2011, 36 FSWs, 7 MSM, and 6 migrantstesting: Utilization of all clinical services, were receiving ART.including those for HIV, increased under the DCA.In Aurangabad, the number of FSWs seeking In Nagpur, support services were provided throughservices increased from 5,785 in 2010 to 11,591 drop-in centers. During the first two years of theby April 2011. Service utilization among MSM DCA, 1,631 PLHIV, including 143 children, receivedincreased over fivefold from 314 in 2010 to 1,529, 3 Breakdowns of data by rural versus urban origin were only available inand increased fourfold (to 8,051) for migrants. Nagpur.8 AIDSTAR-One | August 2012
  9. 9. AIDSTAR-One | CASE STUDY SERIES TABLE 3. ICTC SERVICES PROVIDED TO HIGH-RISK GROUPS BY LINK WORKERS IN NAGPUR ICTC Referrals ICTC Tested Migrant Vulnerable Truckers High-risk Migrant Vulnerable Truckers High-risk groups groups groups groups 2010 25,553 270 3,012 1,949 7,760 120 1,450 463 2011 31,046 5,307 5,489 2,651 9,537 1,394 1,452 1,277 TABLE 4. STI SERVICES PROVIDED TO HIGH-RISK GROUPS BY LINK WORKERS IN NAGPUR STI Referrals STI Tested Migrant Vulnerable Truckers High-risk Migrant Vulnerable Truckers High-risk groups groups groups groups 2010 1,933 120 1,052 1,052 846 65 542 791 2011 4,264 1,270 985 2,172 2,349 299 456 1,195care at the drop-in center, almost a threefold provided through drop-in centers and home visitsincrease over the 673 PLHIV who received care in Nagpur.during 2006 to 2009. • Self-help groups: under the DCA, the number ofPromotional camps implemented by drop-in centers self-help groups increased relative to previoushelped PLHIV gain access to relevant government years. For example, 61 such groups were formedschemes, such as food support, for which they in Aurangabad. One group, comprised of a mixedmight be eligible. Camps held between April and membership that included FSWs, developed anJune 2010 resulted in 1,274 referrals, and of these, innovative mobile service to care for unclaimed407, or 31 percent, received benefits. Referrals to dead bodies in the city, including organizing lastnon-HIV services made outside the camp setting rites.between 2006 and March 2011 totaled 700, with 6 • Positive prevention among discordant couples topercent receiving benefits.4 reduce additional infection.Other services provided through different agencies • Financial schemes: links were established within Nagpur and Aurangabad under the DCA private microfinance companies, Panchayatincluded: Samathi and Municipal Corporation, to build the capacity of self-help groups to market their• Home visits focusing on strengthening ART services or products and strengthen their micro- adherence and also addressing concerns with ventures. An insurance scheme for FSWs, health, hygiene, nutrition, legal issues, and Janashree Insurance Policy, was also initiated. cases of discrimination. Both adults and children received social support and ART care as part of The DCA sought to address gaps in service and the CHAHA5 project. Table 5 shows the services ensure optimal utilization of all existing services as a means to reduce HIV prevalence in its target4 The drop-in center camps were held only in Nagpur.5 CHAHA (wish) is a program initiated by the India HIV/AIDS Alliance areas. Surveillance data show that the incidence ofwith support from the Global Fund to Fight AIDS, Tuberculosis and HIV among ICTC clients reduced from 11.7 percentMalaria. It focuses on mitigating the adverse impacts of HIV on children to 4.7 percent between 2007 and 2010. Manythrough a holistic response to meet the needs of children affected by HIVand their families. factors could contribute to this reduction, including District Comprehensive Approach for HIV Prevention and Continuum of Care in Maharashtra, India 9
  10. 10. AIDSTAR-One | CASE STUDY SERIESTABLE 5. SUPPORT SERVICES PROVIDED THROUGH DROP-IN CENTERS/HOME VISITSIN NAGPUR ART Tracking lost- Government Social Social Legal adherence to-follow-up income generation protection support for aid and nutrition cases support support children2009–2010 498 53 75 84 72010–2011 518 145 23 26 1582011–2012 1,883 95 24 745 14an increase in the number being tested, repeat be feasible to utilize existing infrastructure andtesting, and changes in surveillance methods. The institutional arrangements for health and other socialimplementation of the DCA clearly facilitated access support services. By mobilizing trained humanto and use of services, and may have contributed resources at different levels within the district, theto a reduction in the prevalence of HIV in the two DCA was able to identify and resolve bottlenecksdistricts, but this is impossible to document directly. in HIV management. Networking and participatory action made it possible to improve the quality of HIV services, and was a major factor in making servicesWhat Worked Well more accessible to the target groups. Such tactics as coordinating client visits, providing informal support,Building social capital and empowering and identifying a contact person for emergenciescommunities: Implementing the DCA entailed have proved extremely useful.decentralizing and mainstreaming HIV managementat the district and village levels while empowering The social support delivered during the promotionallocal communities to address HIV. In line with camps provided numerous benefits. Interacting withNACP guidance, the DCA initiative helped to build different government officials under one roof was aknowledge about health, especially HIV and STIs, new experience for PLHIV. The benefits resulting fromwhile building the capacity of high-risk groups to the government schemes led to a marked change inaddress their own health concerns. Link workers the interaction between government officials and thesensitized communities to HIV concerns within the target population, creating a scope for strengtheningreality of their village or block. Informal groups were services even outside the camp setting.formed within high-risk groups, and among youthand women, to help sustain the momentum created. Enhancing understanding of local high- risk groups: The manner in which stigma andThe accomplishments of the link workers merit discrimination occurs depends on the local situationspecial mention given their critical contribution to and existing beliefs and fears associated withincreased access to services in rural areas. The HIV infection. By implementing a range of HIVLink Workers Scheme, given its reach and focus on interventions at the local level, the DCA capturedyouth, can go a long way in building social capital the dynamics that help or hinder HIV managementand can be a resource for the management of not in specific settings. This type of information canonly of HIV, but also any communicable disease. enhance the relevance of HIV interventions. One example is the dilemma in dealing with sexualStrengthening infrastructure and health concerns among marginal groups suchinstitutional care: For change to occur, it must as FSWs. Female sex workers are reluctant to10 AIDSTAR-One | August 2012
  11. 11. AIDSTAR-One | CASE STUDY SERIESapproach doctors regarding STI concerns due understanding of the underlying context. Linkto fear of being judged, and instead use herbal workers, volunteers, and various self-help groupsmedicine or home remedies which can be obtained identified discriminatory practices, such as limitingwithout calling attention to their specific health contact with an infected person or family member,concern. Reluctance of FSWs to seek care was or refusing to recognize widows’ or orphans’addressed through the health camps which offered rights to inheritance. The DCA addressed thesea platform for marginal group members to interact discriminatory practices through such measures aswith health care professionals in a protective informal meetings with important family members,atmosphere without fear of being discriminated the HIV-positive person, and a close relative whoagainst. Prejudice among health care professionals could play a role in changing the situation. Thesewas addressed by the DCA through conducting sessions might involve identifying fears aboutorientation programs for health professionals on HIV and facilitating interactions between the HIV-managing health concerns of marginal groups positive person and a family member, with thesuch as FSWs and MSM. This process created goal of bringing the HIV-positive individual out ofgreater acceptance and willingness to utilize STI isolation and back into the services. In addition, the DCA also facilitatedthe distribution of condoms through non-traditional Creating an enabling environment: Buildingoutlets, such as barbershops and even vegetable social capital to improve HIV management is avendors in areas known as hot spots frequented by process. Selecting empowered groups such as linkFSWs or their clients. workers, youth groups such as Red Ribbon Clubs that are focused on addressing HIV, or women’sMen who have sex with men and violation groups is only a part of creating an enablingof rights: Preventive programs that address environment; there must be a series of actions thatthe local causes of discrimination, as well as allow these groups to use their skills to generatethe fears of hidden MSM and their families, are change. The DCA supported several principlescritical to bringing about change. When local essential to creating an enabling environment.nongovernmental organizations in Nagpur andAurangabad identified instances of human rights • Building from a base of knowledge: the DCAviolations or insensitivity by hired thugs (known as employed various strategies and actors to collectgoondas), sex worker clients, or the police force, and analyze information about the local context.the DCA facilitated sensitization of police officials, Using information drawn from details about thecreated a platform to raise concerns about rights population, demographics, and the physicalviolations, and strengthened the dissemination and cultural terrain, the Avert Society sensitizedof information on differential sexual orientation different groups who could serve as agents ofacross the health care system and the community. social change, and trained them to take proactiveMSM reported that they were made aware of who measures to promote contact in the event of violence, and that policehave become more receptive to their concerns. • Facilitating local-level intervention: once trained, agents of social capital receive support forPeople living with HIV and their rights: planning and implementation from agencies thatPLHIV and their families, especially women and are part of the DCA. Some of the interventionschildren and those with limited resources or include activities in health care, communicationknowledge of their rights, face harsh stigma and on safe sex practices and condom use, nutrition,discrimination, and addressing this stigma requires welfare, and legal services. District Comprehensive Approach for HIV Prevention and Continuum of Care in Maharashtra, India 11
  12. 12. AIDSTAR-One | CASE STUDY SERIES• Training to support caring: central to creating and in managing their own lives and that they carry sustaining an enabling environment is sensitivity, out their daily routines over a long period of time. which calls for training to assess each case and This can be made possible only by strengthening having the skills to provide or guide clients to the treatment and other support services for PLHIV. appropriate services. This is especially relevant for ensuring high-quality treatment and respect Condom use: Preventive interventions for human rights. and knowledge on their own will not increase condom use, which is determined by individualThe DCA has played a crucial role in creating an circumstances and the negative impressionsenabling environment to address HIV concerns at attached to condom use. According to FSWs,the village, block, and district levels. That was made female condoms offer women a chance to havepossible through participatory action that brought safe sex, and home-based sex workers generallytogether communities and diverse agencies whose prefer them, but it is the situational reality thatjoint efforts resulted in HIV management for the determines their use. Interventions and discussionsdistrict as a single unit. with link workers show that women who work outside the brothel system and engage temporarilyDeveloping a process for documentation in sex work are unwilling to carry condoms. Theseand communication: The Avert Society women need easy access to condoms close todeveloped a system of monitoring and hotspots, either through nontraditional outlets ordocumentation, with local agencies playing a major peers. MSM overall accept condom use, but somerole. The DCA process strengthened the system MSM who earn an income from sex will haveby identifying duplication of cases and gaps in unprotected sex for a higher price, whereas otherservices, and by documenting the experience of MSM avoid using condoms with regular partners asclients who sought care, which made it possible a way to indicate improve the quality and timeliness of services.The improved monitoring system helped to identify Addressing mental health and motivationproblems with human rights violations and services for people living with HIV: PLHIV undergofor orphans and vulnerable children, resulting in a personal trauma when confronted with the fact thatstronger programmatic focus on these issues. they are HIV-positive. In some instances, people become nonresponsive or slip into depression. Counselors are equipped to deal with emotionallyChallenges stressed individuals, but extreme forms of depression call for specialized care. Another issue of concern is non-adherence to ART care; loss toTransforming fear and alienation to follow-up is especially high among single men.positive action: HIV invokes fear in the mindsof people, a natural response given that earlyawareness programs on HIV—during the earlydays of the epidemic—highlighted a threat to life. Limitations of the DCAThe next focus of preventive measures dwelt on The DCA must function within the limits of localthe taboo subject of sex and sexuality, giving rise to contextual realities to remain viable and relevant tostigma in addition to fear. Thus, at the present stage HIV management.of intervention, the DCA must translate fear anddiscomfort to positive action. To make this change, • The DCA can only build on existing human andthe community needs to see that PLHIV are active infrastructural resources, employing and adapting12 AIDSTAR-One | August 2012
  13. 13. AIDSTAR-One | CASE STUDY SERIES them to carry out its role within the scheme of community-based organizations, and the staff national development. Otherwise, the approach of government agencies to identify and address would function merely as a tool for identifying local issues related to HIV. gaps in support and service within the district. • Collating and disseminating data at different• The DCA requires a capacity for flexibility and contact points to provide communities with innovation to enable the implementation of intervention findings and to facilitate participation. sustainable options, which implies that the key individuals and agencies involved can play a • Strengthening local agencies and initiatives for central role in its success. mainstreaming and networking, to ensure the sustainability of DCA’s holistic focus.• The DCA focuses on building institutional linkages and networking, but an excessive focus Several other principles are important to ensure a on institutionalizing the approach can jeopardize holistic response to HIV, as well as to other health its success. and social challenges: Develop local initiatives: The management of communicable diseases requires sensitivity toRecommendations the local context. In interventions targeting FSWs, MSM, and other high-risk groups, the interventionStrengthen participatory ownership and staff can play an important role in identifying specificsustainability: By developing a platform that needs; in rural communities, link workers can takeallows a range of actors to coordinate, network, and this role. Interventions should always be based oncollaborate, the DCA has ensured the availability what the local community needs, and should includeof comprehensive, accessible services for those provisions to protect human rights and privacy. Inwho need them most. Often, an individual, a district addition, it is essential to document the initiativesofficial, or community leader plays a critical role in developed and synthesize the information collected.facilitating diverse interventions. However, ensuring It is also useful to integrate lessons learned withinsustainability requires that the entire system be community prevention programs through street playssensitive to the complexities of HIV management, or locally created that service delivery is not dependent on a singleperson. Ensuring that communities and institutions Developing approaches that reflect the true needs“own” the effort to eradicate HIV requires specific of the community can take time. For example, oneactions: link worker developed his own method of network analysis and used it to identify 13 positive cases• Sensitizing institutions involved in services for within a village social network. The process of health, welfare, education, empowerment and observation, identifying probable close ties, and justice, and governance. facilitating testing took seven months.• Empowering PLHIV, their families, and Keep focusing on stigma: Stigmatization, communities to manage HIV individually and or de-stigmatization, is a process and not a one- within the community. time event. When confronted with the threat of communicable disease, a society’s initial reaction• Creating informal helping networks at the is to identify and denounce any apparent deviation village level to mobilize youth, self-help groups, from the norm—for example, the behavior of FSWs District Comprehensive Approach for HIV Prevention and Continuum of Care in Maharashtra, India 13
  14. 14. AIDSTAR-One | CASE STUDY SERIESand MSM. Approaches like the Link Workers and ensuring participatory, collective action.Scheme, being based on close interaction with local Although there are plans to replicate the DCAcommunities, can play a powerful role in reducing in other districts, replication has not yet begun.stigma, and also in linking PLHIV with the service Steps for scaling up DCA need to be in line withand support networks created through the DCA. the NACP Phase IV, which focuses on using an inclusive, participatory, and consultative approachChildren who have HIV bear the heaviest burden to address concerns about HIV, especially amongof stigma from HIV. It is important for HIV program high-risk and vulnerable groups. Sustainability formanagers to address discrimination against these DCA would require District AIDS Prevention andchildren and to look at ways to integrate them within Control Units to take on an active role because itthe community and to prevent social isolation. Here, is present throughout Maharashtra. Coordinationthe DCA can play an important role through its at district levels can be strengthened by block-broad reach among communities and institutions, level committees consisting of individuals andand through its capacity for networking. agencies, provided that they are well-oriented on the approach. A central tenet for successfullyConduct research: Addressing HIV in terms implementing the DCA is a participatory approachof specific contexts requires both qualitative and that can adapt to the input and insights of partnerquantitative research that can point to appropriate agencies on the specific needs of high-risk groupsapproaches and can identify service weaknesses. and vulnerable populations at the block or districtResearch findings should be made available and level. greported back to the communities and institutionsthat participated. REFERENCESCreate helping networks: Fundamental to theDCA and its sustainability is the availability of a pool Avert Society. 2008. HIV/AIDS Communication Strategyof sensitive and knowledgeable individuals from and Implementation Plan, Aurangabad District, Maha-various groups, such as women and youth, who rashtra. Mumbai: Avert Society.are willing to play a role in providing HIV services. Avert Society. 2010a. HIV Risk Behavioral SurveillanceSuch a network can be useful in other types of Survey in Maharashtra Wave IV. Mumbai: Avert, or emergencies such as natural disasters.Creating or participating in helping networks can Avert Society. 2010b. HIV Risk Behavioral Surveillancebenefit those who take part—for example, by Survey in Maharashtra Wave V. Mumbai: Avert Society.sensitizing urban participants to the realities of rural Fullem, Andrew. 2003. Supporting Community Respons-life. Also, by bringing together people from different es to HIV/AIDS in Zambia. Boston: JSI.backgrounds, helping networks can represent astep toward fuller utilization of India’s greatest Gulu District Local Government. 2008. HIV/AIDS Strate-wealth—its people. gic Plan (2009–2012). Gulu: Gulu District Local Govern- ment. National AIDS Control Organisation. 2006. NationalFuture Programming AIDS Control Programme Phase III 2006–2011. New Delhi: Ministry of Health and Family Welfare, Govern- ment of India.The District Comprehensive Approach can play acentral role in facilitating HIV management because National AIDS Control Organisation. 2009. Link Workerit gives scope for sustaining decentralization Scheme Operational Guidelines. New Delhi: NACO.14 AIDSTAR-One | August 2012
  15. 15. AIDSTAR-One | CASE STUDY SERIESAvailable at expresses gratitude to all of them. The journey, fromWorker%20Scheme/Operational%20Quidelines-LWS.pdf beginning to end, remains the outcome of the insights,(accessed March 2012). documents, and experiential details provided by the staff of the Avert Society: special thanks to Smriti Acharya,National AIDS Control Organisation. 2011a. National Anna Joy, Dr. Anjana Palve, Amita Abichandani, ArupaAIDS Control Programme Phase III: State Fact Sheets, Shukla, Hemant Bhosale, Sidharth Bhotmange, NitinMarch 2011. New Delhi: Ministry of Health and Family Bhowate, and Dr. Rajrattan Lokhande. The author wouldWelfare, Government of India. also like to thank the partner nongovernmental organiza- tions of the Avert Society who shared their knowledgeNational AIDS Control Organisation. 2011b. “National and guided the process of understanding the relevanceAIDS Control Programme Phase IV Planning Process.” of the District Comprehensive Approach. The authorAvailable at wishes to thank Marathawada Gramin VIkas Sanstha;AIDS_Control_Programme_Phase_-IV/NACP_-IV_Plan- Prerana Samajik Sanstha; Gram Vikas Sanstha; Graminning_process/ (accessed March 2012). Vikas Mandal; UDAAN, CRT & RI; Dr. Babasaheb Ambedkar Vaidyakiya Pratisthan in Aurangabad andUnited Nations Children’s Fund. 2003. Helping Com- Sarathi; Bharatiya Adim Jati Sevak Sangh; the Compre-munities to Take Charge–A Process Documentation on hensive Rural Tribal Welfare Development Programme;Microplanning. Mumbai: United Nations Children’s Fund. the Indian Institute of Youth Welfare; the Indian Red Cross Society; and the Young Men’s Christian Asso- ciation in Nagpur for their insights. Dr. S. S. Kudalkar,RESOURCES representing the Mumbai Districts AIDS Control Society, facilitated the process by giving an overview of govern-Avert Society: ment initiatives. True to the spirit of implementing the District Level Comprehensive Approach, the staff at theJohn Snow, Inc.: District AIDS Prevention Control Unit and the govern- ment agencies gave their full support at all stages of theMumbai District AIDS Control Society: documentation process. Their valuable inputs are ciated. Thanks are due to Ruchi Lall for editing the initial draft and to Stephanie Joyce for the final edit.National AIDS Control Agency for International Development/India: RECOMMENDED Charles, Molly. 2012. District ComprehensiveJoint United Nations Programme on HIV/AIDS/India: Approach for HIV Prevention and Continuum of in Maharashtra, India. Case Study Series. Arlington, VA: USAID’s AIDS Support and Technical Assistance Resources, AIDSTAR-One, Task Order 1.ACKNOWLEDGMENTS Please visit for additional AIDSTAR-One case studies and other HIV- and AIDS-The author would like to thank Dr. David Hausner, Coun- related resources.try Director, AIDSTAR-One, for the support extendedat every stage of documentation and finalization of thedocument. Dr. Sangeeta Kaul and Sampath Kumar, withthe U.S. Agency for International Development, providedvaluable input on the documentation process, especiallyat the stage of conceptualization. This exploration of is-sues linked to HIV management and stigmatization wasmade possible by the willingness of those infected andaffected by HIV to share their inner spaces; the author District Comprehensive Approach for HIV Prevention and Continuum of Care in Maharashtra, India 15
  16. 16. AIDSTAR-One’s Case Studies provide insight into innovative HIV programs and approachesaround the world. These engaging case studies are designed for HIV program planners andimplementers, documenting the steps from idea to intervention and from research to practice.Please sign up at to receive notification of HIV-related resources,including additional case studies focused on emerging issues in HIV prevention, treatment,testing and counseling, care and support, gender integration and more.