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From Isolation to Solidarity

How community mobilization underpins HIV prevention in the Avahan India AIDS Initiative

Case Study
Stories and Experiences of Key Populations

From Isolation to Solidarity:


How community mobilization underpins HIV prevention in the Avahan India AIDS Initiative
BY BILL RAU

Acknowledgments
The author gratefully acknowledges the support and insights of CBOs and individuals representing communities served by the Avahan program, as well as the support and guidance of PraxisInstitute for Participatory Practices and Avahans state-level partners: International HIV/AIDS Alliance and Hindustan Latex Family Planning Promotion Trust (Andhra Pradesh), Karnataka Health Promotion Trust (Karnataka), FHI 360 (formerly Family Health International) and Pathfinder International (Maharashtra), Emmanuel Hospital Association (Manipur and Nagaland), and Tamil Nadu AIDS Initiative (Tamil Nadu). The author also thanks the following people for their valuable contributions to this publication: Tisha Wheeler of the Bill & Melinda Gates Foundation for her comprehensive technical review; James Baer for his careful editorial work; Pol Klein of Futures Group for the publications design; and Lori Merritt and Ginny Gordon of Futures Group for its final editing. This work was funded by the Bill & Melinda Gates Foundation. The views expressed herein are those of the author and do not necessarily reflect the official policy or position of the Bill & Melinda Gates Foundation.

Contents
ABBREVIATIONS 5 INTRODUCTION 7 COMMUNITY MOBILIZATION WITHIN AVAHAN FOUNDATIONS FOR COMMUNITY MOBILIZATION CBOs AND COMMUNITY MOBILIZATION PROGRAM INPUTS PROGRAM OUTCOMES LOOKING TO THE FUTURE 12 16 22 32 40 46

CONCLUSION 50 ADDITIONAL RESOURCES 52

REFERENCES 54

Abbreviations
AIDS CBO FSW HIV HR-MSM IDU NGO STI TG acquired immune deficiency syndrome community-based organization female sex worker human immunodeficiency virus high-risk men who have sex with men injecting drug user nongovernmental organization sexually transmitted infection transgender person

ABBREVIATIONS

Introduction
How can you prevent the spread of HIV among people who may consider it one of their least pressing concerns? To those who work in the field of HIV prevention, the danger posed by AIDS is self-evident, and the need to prevent its spread is urgent. But from the point of view of those most at risk of HIV infection, the picture may look very different. This has often been the case in India. Although the proportion of the population infected with HIV is just 0.3 percent, the absolute number is 2.4 million, making it the country with the third largest number of HIVpositive people.1 But those most at risk of contracting the virus in India are among the countrys most socially and legally marginalized groups: female sex workers (FSWs), high-risk men who have sex with men (HRMSM), transgender people (TGs), and injecting drug users (IDUs). Because of marginalization and social stigma, FSWs, HR-MSM, and TGs are regularly exposed to violence, harassment, or demands for sexual favors from police, gangs, clients, partners, pimps, and brothel owners. Similarly, IDUs are subject to harassment, arrest, violence, or social exclusion by police, religious and community groups, and family members who see drug use as a moral failing rather than an addictive behavior. Social marginalization, economic necessity, and the threat of harassment, arrest, or violence can push worries about HIV to the bottom of the list. Can a sex worker afford to refuse a client who does not want to use a condom? What will happen to her if she refuses a gang members demand for free sex? Can she afford the risk of arrest and separation from her children if she doesnt pay off a police officer?

INTRODUCTION

These are among the most immediate concerns for many of those at highest risk of HIV infectionand they are also precisely the factors that increase their vulnerability to the virus. This is the challenging context in which the Avahan India AIDS Initiative has operated since 2003. Funded by the Bill & Melinda Gates Foundation, the nongovernmental organizations (NGOs), peer outreach workers, and other community membersi of the Avahan initiative provide a standardized package of HIV prevention services for 320,000 community members in six Indian states. India has a long history of community mobilization for social change, but significant discrimination still exists. Broad social inequalities based on gender, class, and sexual identity are further complicated by specific problems affecting many of those at high risk of HIV, such as low educational levels and illiteracy, lack of access to loans to finance alternative enterprise, and denial of social entitlements such as healthcare services, identity cards, food ration cards, and childrens education.

i D  iscussion among communities of female sex workers, men who have sex with men, transgender people, and injecting drug users in India has led many of them to reject the label high-risk. This publication therefore uses the term community instead of high-risk group, and community member instead of high-risk group member, to refer to those groups of people in India at highest risk of HIV infection who are the focus of the Avahan Initiative. However, for the sake of clarity and for consistency with generally understood terminology about men who have sex with men, those receiving services from Avahan are referred to here as HR-MSM to indicate that they are a subset of all MSM whose sexual behavior puts them at increased risk of HIV (because they have a large number of sex partners, sell sex, practice receptive anal sex, or a combination of these factors).

INTRODUCTION

STRUCTURAL INTERVENTIONS have been defined as ones that promote health by altering the structural context within which health is produced and reproduced. Structural interventions locate the source of public health problems in factors in the social, economic, and political environments that shape and constrain individual, community, and societal health outcomes. 2 The government of India recognizes that structural interventions are required to address the complex social, economic, and legal factors that increase vulnerability to infection, and Avahanii has provided an opportunity to attempt this at scale. The programs strategy is one of community mobilization, facilitating the active participation of community members in HIV prevention and other interventions. As community members receiving HIV prevention services have become more aware of their common problems, they have organized grassroots groups to reduce their isolation and address problems at a local level. Over time and with the support of Avahan, these groups have formalized into community-based organizations (CBOs), with the capacity to oversee programming and engage in policy activism. CBOs help their members overcome the isolation and vulnerability they have experienced as individuals, and their structure provides longterm cohesion for collective problem solving. While remaining focused on HIV prevention, they also allow communities to use their skills and commitment to work for improved social welfare and social justice.3, 4

ii T  hroughout this publication, Avahan is used to refer to the community members, local and state-level NGOs, and national program staff who implement the program.

INTRODUCTION

The role of CBOs is crucial to the long-term sustainability of HIV prevention. The Avahan initiative will end in 2013, with clinical services and commodity provision assumed by state and national governments. Communities will have to drive demand and provide other supportive services through CBOs if their legacy in shaping HIV prevention in India is to continue. This publication presents some of the operational steps the Avahan program has taken to mobilize communities and strengthen CBOs of FSWs, HR-MSM, TGs, and IDUs. It also describes some of the tangible impacts of community mobilization on individuals and communities. The information presented here is based on Avahans operational experience, peer-reviewed publications about Avahan, and a series of in-depth interviews conducted by the author in October 2010 with office bearers and members of CBOs in Mumbai in Maharashtra state; Bangalkot and Bijapur districts in Karnataka; and Ananthapur district in Andhra Pradesh.iii Eight interviews were with FSW CBOs and two with CBOs of HR-MSM and TGs. Peer outreach workers (who are themselves community members) and NGO outreach staff were present at most interviews and gave additional perspective on the processes of community mobilization. Published and unpublished documentation supplements the in-person interviews.

iii  In India, a district is an administrative subdivision of a state. An average district has an area of 2,000 square miles and a population of 2 million.

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INTRODUCTION

How Avahan Is Organized

5, 6

Avahan was established in 2003 in India by the Bill & Melinda Gates Foundation. It is a focused HIV prevention program offering a standardized package of proven interventions to groups at highest risk of HIV infection and bridge populationsiv in six states: Andhra Pradesh, Karnataka, Maharashtra, Manipur, Nagaland, and Tamil Nadu. These states, with a combined population of 300 million, accounted for 83 percent of the countrys HIV infections in 2002. The interventions provided by Avahan include behavior change facilitated by peer educators; management of sexually transmitted infections (STIs); condom promotion; provision of commodities (condoms, lubricants, needles and syringes); community mobilization; and advocacy for an enabling environment. At the state level, one or more organizations (known as lead implementing partners) oversees the HIV prevention interventions. At the local level, these interventions are implemented by smaller, grassroots NGOs (referred to as local implementing NGOs).

iv Bridge populations are persons who have sexual contact both with persons who are frequently infected with and transmit sexually transmitted infections and also with the general population.

INTRODUCTION

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Community Mobilization within Avahan

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Community mobilization in the Avahan program is a dynamic process that can be summarized in four phases (although, in practice, the phases overlap):
Individuals at high risk of HIV first come to identify as a community of people with shared interests. They develop the skills and confidence to participate in the delivery of HIV prevention and related services. They identify and address the structural factors such as stigma, discrimination, and violence that increase their vulnerability to HIV. They define for themselves a broader agenda for their rights and entitlements as citizens. Engaging communities to plan and deliver HIV prevention services was envisaged from the first stages of the Avahan initiative. Several of the lead implementing partners had experience in organizing and facilitating community involvement in HIV prevention. In addition, a deep history of local organizing in India had exposed many people to the basic features of community-based groups and community mobilization. Before the intervention began, community members assisted with the initial mapping of the number of community members, their gathering places, and service outlets. Peer outreach workers were then trained to promote the use of STI services and condoms among community members.1

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Gradually, community members began to take on more responsibilitiespartly because paid NGO staff alone could not manage the workload as programs were scaled up, but also in response to community members growing sense of ownership and agency. Peer outreach workers developed greater autonomy in managing their work, while other community members served on project management committees, helped run crisis response teams to address incidents of violence and harassment, and began to engage with authorities such as the police and local and state government. By 2007, informal groups of FSWs, HR-MSM, and TGs had begun to take on a more organized character. The state-level lead implementing partners worked with implementing NGOs to foster these changes, for example by organizing discussions at drop-in centers and providing small amounts of funding for group activities. As the programs HIV prevention and community ownership focus began to merge with the communities push for greater control in defining problems and working on solutions, Avahans management began to encourage the creation of more formalized organizationsCBOsand to more systematically share partners lessons across states. By 2008, the emergence of community groups with dynamic leadership converged with Avahans plans to transition its programs to the federal and state governments, and this set in motion a more active fostering of CBOs. It was clear that communities that had initially been defined as target groups for service delivery had become powerful forces working for access not only to HIV prevention services but also to other social services and their rights as citizens of India.

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Precedents for Community Mobilization in India


India has a long history of self-help groups that deal with local issues. Starting in the mid-1980s, savings and credit groups provided financial services to poor people and grew into a powerful social movement for improving the status and well-being of primarily rural low-income women, with more than 1.5 million groups by the early 2000s.7, 8 Although NGOs initiated the formation of self-help groups, the federal and state governments became (and remain) active in fostering such groups among impoverished women. Andhra Pradesh state encouraged all women to join self-help groups, and an estimated 8 million had done so by early 2007.9 In other parts of India, the Self-Employed Womens Association (SEWA) organized informal-sector women workers into cooperatives, savings and credit, and other groups.10 In other areas of health, including maternal, neonatal, and child health and nutrition, community mobilization is an approach increasingly adopted to improve health outcomes among women and children.11, 12

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Foundations for Community Mobilization

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Several Avahan program components are significantnot only for their importance to HIV prevention but also for the foundation they have laid for community mobilization and the formation of CBOs.
Peer outreach workers: Local implementing NGOs identify and train members of the community who are willing to engage in regular outreach, who are well accepted by their peers, and who show leadership potential. Each peer outreach worker is responsible for an average of 50 community members: she meets with each at least once a month for discussion and problem solving about safe sex, as well as providing condoms and making referrals to one of the programs 420 clinics for free diagnosis and treatment of STIs.1 The STI clinics also serve as referral points for TB screening and HIV testing and treatment services. Peer outreach workers receive a small amount of remuneration for their work. Drop-in centers: From the outset of the program, a critical component in the cohesion of local groups was the creation of drop-in centers. These centers are rooms furnished simply that provide community members with a place to relax, rest, and get information. Drop-in centers are usually attached to the STI clinics run by the program, and they often provide a meeting place for nascent groups that may later develop into CBOs. Crisis response systems: Designed by the lead implementing partners and often inspired by efforts already existing at the local level, these systems involve a telephone hotline staffed by rapid response teams of local peer outreach workers, NGO staff, and other community members.

FOUNDATIONS FOR COMMUNIT Y MOBILIZ ATION

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The methodology of MICRO-PLANNING , introduced across the program in 2006, enables peer outreach workers to draw on their knowledge of the people they work with to plan and prioritize outreach. On a weekly basis, peer educators document the number and type of interactions they have with community members, and they meet at least bi-weekly with supervisors to identify ongoing issues, plan subsequent activities, and discuss strategies to address structural vulnerability. Peer outreach workers not only collect data but analyze it to plan follow-up with specific individuals in their caseload.1

The team quickly comes to the aid of any community member who experiences violence or harassment, usually within an hour of being summoned. In some cases, this means going to the police station to talk with the arresting officer, and in others, it means helping a sex worker get medical attention or simply providing emotional support. Today, community members make up the vast majority of rapid response team members and often manage the program on their own.13, 14 Legal literacy: A companion element to crisis response systems is training sex workers, HR-MSM, and IDUs to understand and realize their rights under the law and the entitlements of all community members as Indian citizens. This often includes practical knowledge, such as a womans right to be dealt with by a female police officer if arrested or the right not to be detained without being charged with a crime. In addition, police officers have received legal literacy and sensitization training to minimize misapplication of laws regarding sex work and same-sex behavior. Peer oversight committees: Committees staffed by community members are tasked with monitoring the implementation of program activities, such as ensuring that the services provided at STI clinics are acceptable to community members and offered at times that will maximize attendance. Other committees oversee drop-in centers, crisis response systems, and self-help groups, such as for savings and micro-lending.

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Table 1: Foundation Elements of Community Mobilizationv


COMMUNITY MOBILIZATION
Elements Indicative Program Activities

PHASES OF HIV PREVENTION INTERVENTION


Planning Roll-out Expansion and Maintenance

Recruit peer outreach Materials for non-literate workers workers and engage developed and peer outreach workers them in micro-planning trained in their use System devised and refined for regular report-back and problem solving Establish drop-in centers Initiate crisis response system Combine STI clinic with space for individuals to relax and meet Identify and train response team members Set criteria for response Inform communities about system Monitor effectiveness Provide legal literacy Provide training, including for non-literate audiences Provide training for police Establish oversight committees for HIV prevention activities Monitor health system access and health provider responsiveness

vT  he activities and phases in this table are indicative rather than prescriptive; the range of activities described might vary when adapted to different settings. The three phases of planning, roll-out, and expansion/ maintenance refer to those points in program development when the respective elements should be considered. The phases are presented sequentially, but in practice, they are likely to overlap, and activities may reinforce one another. For example, effective crisis response systems draw on legal literacy training but are also likely to enhance interest in and uptake of such training. In Avahan, each phase had a duration of 13 years.

FOUNDATIONS FOR COMMUNIT Y MOBILIZ ATION

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Table 2: Processes of Community Mobilization and CBO Formation


PROCESSES OF CHANGE SIGNIFICANT STEPS PHASES OF HIV PREVENTION INTERVENTION
Expansion and Maintenance

Elements

Activities

Planning

Roll-out

Identification with other community members

Dialogue among community members

Create environment where dialogue can occur Provide means for community members to interact with and inform program staff

Growing sense of Identify and act on problem-solving options empowerment Express achievements, e.g., verbal statements of among community personal and group agency, media coverage members and informal groups Take action on an immediate issue of concern such as violence Conduct legal literacy training Establish rapid response system for incidents reported by community members Identify potential leaders Conduct literacy training Conduct training Develop technical skills for conducting organizational activities Outline CBO governance processes Identify needed skills Prepare low-literacy resources

Collectivization

Develop leadership skills

Develop decision-making processes and explain to membership Establish election procedures Create membership criteria, including fees

Register CBO

Conduct training in registration requirements and processes

X X

Hold CBO elections

Ownership

Identify entitlement issues and constraints Conduct advocacy

Analyze issues Develop and consider options Identify key policymakers Develop and implement strategy

Collaborate with other CBOs/NGOs Engage with government authorities

Discuss common issues and possible strategies Form CBO networks Attend regular and special meetings Invite authorities to organizations events Develop relations with technical officers

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FOUNDATIONS FOR COMMUNIT Y MOBILIZ ATION

FOUNDATIONS FOR COMMUNIT Y MOBILIZ ATION

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CBOs and Community Mobilization

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The structure and program emphases of CBOs reflect Indias diversity and the variety of needs at the local level. Each CBO
is officially registered within its district, allowing it to operate and receive funds. In general, CBOs operate at the district level, although some are formed at a sub-district level when that geographic unit has a critical mass of members and sufficient leadership to form its own organization. Each CBOs internal structure includes office bearers (chair, vice-chair, secretary, and treasurer) and typically from three to five operating committees addressing issues of concern to the CBO, which will include HIV prevention but not be limited to this. Sustaining HIV prevention: The most immediate task facing CBOs is to motivate community members to use HIV prevention servicescondoms, clinic visits for STI management and other health issuesand to promote HIV prevention within the wider community. CBO members and office bearers indicate that they take their prevention responsibilities seriously. The program has given them an understanding of the importance of HIV prevention; and CBO members increasingly think in terms of healthy lives and are committed to protecting themselves, their clients, their families, and other stakeholders in the sex industry.

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HIV Prevention with Migrant Sex Workers: A CBOs Story


Jagruti Mahila Sangha CBO in Bijapur District of northern Karnataka is implementing a project to reach migrant FSWs at both departure and arrival locations with HIV prevention messages and condoms. The CBO provides pre-departure counseling to FSWs intending to migrate to Mumbai or Pune in Maharashtra state for work. It reinforces prevention information, explains the location of STI clinics, and provides condoms. The project also coordinates with HIV prevention initiatives in the receiving cities to notify them of a sex workers intended arrival and to ensure that HIV prevention facilities are available. A telephone helpline is in place, and the CBO gives the migrating women a key chain with the helpline number. It also works with women who return from working elsewhere, encouraging visits to the STI clinic and promoting safe sex. While relatively new, the project shows Jagruti Mahila Sanghas level of sophistication and its ability to manage a complex prevention network that addresses the reality of economic migration among sex workers.

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CBOs AND COMMUNIT Y MOBILIZ ATION

Crisis response: Crisis response systems are a central activity of most CBOs because they address the urgent need of community members for security from physical or legal harassment. CBOs have increasingly taken on the organization and volunteer staffing of crisis response teams, reducing the participation needed from paid peer outreach workers or NGO staff. Literacy and learning: Illiteracy is widespread among female sex workersfew of whom have gone beyond the initial years of school. But literacy is important for establishing ones official identity in India and acquiring the national identity card used to obtain food rations. Women who have been abandoned or divorced or who lack a fixed address may remain without official identification. Basic literacy training is offered through many CBOs, so that members can at least read simple documents and newspaper headlines and sign their names. CBOs speed up the application process for identity cards by helping members obtain paperwork, such as proof of residency, and by vouching for the applicant with local government officials.

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Crisis Response: Shobas Story


Shoba lives in Bijapur District in Karnakata and for seven years has been a hidden sex worker: instead of meeting Shoba in a brothel or on the street, clients reach her by phone and she travels to meet them. Shoba became responsible for looking after her child and younger siblings when her father and older sister died and her husband left her. She became a sex worker. Only later did Shoba learn from a CBO about condoms, safe sex, and remaining healthy. Now she attends a program clinic every month for STI screening. Shoba has also become a member of the crisis response committee. Although she travels a lot for business, if a crisis occurs and she is in town, she responds with other CBO members. She has attended court with peers facing legal charges, and she is confident speaking out in support of their rights.

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Shoba feels it is her duty to use the training she has received from the CBO to inform and help other women live healthier and fuller lives. For the future, she wants her son to get a good education and wants to help her siblings. Shobas story demonstrates how a community member can be empowered by the experience of joining a CBO. Despite being a hidden sex worker, Shobas sense of identification through the CBO has allowed her to find common cause with her brothel- and street-based peers, and she has moved from being a user of services to someone who actively contributes to the CBOs work. This development of personal and collective agency is essential for the long-term sustainability of CBOs as they transition away from the institutional support of the NGOs that helped them form.

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LIFE-SKILLS FOR GIRLS At least two CBOs run life-skills training courses for adolescent girls. The 36-session courses are designed to provide the girls with basic information on health, social awareness, accessing social services, and interpersonal relationshipsboth with other girls and with boys. The way the course came about illustrates the community mobilization process. Initially, a course was run for orphans and vulnerable children at the initiative of the lead implementing partner. Members of the CBO felt that similar training for adolescent girls was necessary. Following discussions, the CBO and the lead implementing partner created the life-skills course for the girls. This is a typical pattern: identify needs and then discuss and plan to put solutions in place that best meet local needs and interests.

Economic security: One of the most common activities within CBOs is the establishment of savings and loan groups, following the precedent set by the thousands of self-help groups across India. Group members contribute a fixed amount, usually 10 rupees (US$0.25) per week, to a common fund. As a need arises, a member of the group can apply for a loan (e.g., to cover medical expenses for a family member, pay for a childs schooling, or make a contribution during important cultural or religious festivals). Interest rates are far below what is charged by money lenders, and CBOs report that repayment rates are high. Each savings group has a designated member who manages the account and maintains the account books. For many CBO members, the savings groups provide their first opportunity to gain a small but important degree of economic security. With the economic security comes a sense of increasing control over their lives.

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Health and Economic Security: Sahanas story


Sahana is 24 years old, and for three years she has been a devadasi, a young woman married to a temple to perform rituals there. In Karnataka state, this longstanding tradition is banned because the primary occupation of devadasis has become sex work. Nevertheless, some eldest daughters are still assigned as devadasis, as happened to Sahana upon her mothers death. All Sahanas sisters go to school, and she herself would like to go to college, but since her father does not care for her siblings properly, she continues with sex work in order to provide for them. A CBO that started under the auspices of Avahan has been important to Sahana as a means to access better healthcare. She is conscientious about attending health talks and screenings at the program clinic. Through the CBO, Sahana has also become a member of a self-help savings group, contributing 10 rupees (about US$0.25) per week. The CBO is here for our welfare, Sahana says. They have done their best, because they are like us. Sahanas story shows that a CBO can build trust because its leaders are from the community it serves and that it can go beyond health interventions such as HIV prevention to offer the possibility of economic stability and empowerment.

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CBOs AND COMMUNIT Y MOBILIZ ATION

Going mainstream: Organizing a CBO is just a starting point for combating the discrimination and marginalization of wider society in a long-term way. To address this, many CBOs have begun taking part in mainstream events such as observances of religious festivals and marches for social welfare reform, so that they are seen to be engaged in issues that concern non-community members. They also seek to build stronger relations with the police by organizing health camps at police stations during which doctors provide free health services. Participation and communication: Just as noteworthy as the CBOs program activities are the governance systems designed to enable collective discussion and action on issues while building organizational capacity. Committees hold regular meetings and share the proceedings with their members. Leaders bring issues to the broader membership for discussion and explain the rationale for decisions made by the executive or the board. Most CBOs keep notebooks with official correspondence, clippings of news articles, and other relevant items. Developing democratic procedures: The election of office bearers occurs annually in most CBOs. In one example in Mumbai, the individual who receives the most votes is elected president, the runner-up becomes vice-president, and so on. In other CBOs, individuals run for a specific office. In Pragathi Mythri Mahila Sangham, a CBO in Ananthapur District, Andhra Pradesh, the office bearers do not take unilateral decisions but rather seek consensus from all members. The president of that CBO said that the office bearers can guide discussions but will not act independently of member decisions.

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Program Inputs

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To help informal groups reach the stage where they can register legally as CBOs and to help them develop further after registration, implementing NGOs and lead implementing partners must provide a variety of inputs.
Identify leadership: Even before CBOs began to be formed in 2008 and 2009, local leadership had been fostered among peer outreach workers, who became advocates not only for safe sex and for using health services but also for expanding the potential of other individuals from their community. As their skills and voice in shaping outreach were increasingly heeded by the program, peer outreach workers developed a sense of ownership of the components of HIV prevention. Their self-confidence and self-esteem encouraged other community members to use program services. Over time, peer outreach workers received further training in literacy, legal literacy, advocacy, and other skills. They now use their influence and skills to shape the CBOs they are leading. Strengthen management: Most CBO leaders have never managed an organization before. The NGO can contribute to their skills through training, coaching, and observation (NGO staff attend meetings and provide feedback). Community members are often anxious to assume greater control over processes, particularly where NGOs are committed to empowering them. Nonetheless, within the communities themselves, much learning is often needed to build accountability among leaders and members, encourage members to take on leadership roles that are new to them, and do the hard work of formalizing local organizations.

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KEY PROGRAM INPUTS LEADERSHIP: Encourage current leaders (peer outreach workers) to move up into CBO leadership MANAGEMENT: Build leaders management capacity; check for resistance within NGO to handover of power to CBOs FUNDING: Provide small, carefully budgeted, accountable financial support NETWORKING: Help identify opportunities and build capacity of leaders for effective participation PROGRAM MANAGEMENT: Incorporate successful strategies from one area into common program approach and standards Fostering community ownership can pose challenges for local implementing NGOs, too. Some staff may be skeptical about handing over activities to community members who have been participants in the program, rather than controllers of it, but they must devise appropriate training and systems for this purpose. Some NGO staff, unaccustomed to being challenged by newly empowered community members, may resist the new relationships. Occasionally, NGO staff themselves harbor stigma against the communities they are meant to support. Ultimately, NGOs must be able to envision a changed role in which their oversight of most activities becomes less pronounced as communities take over. Facilitate funding: Most CBOs collect a small membership fee, but at present the majority of funding for CBO activities comes either from the local implementing NGOs or from the lead implementing partner.

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Study Tours: Learning from Other CBOs


Avahan linked some of its lead implementing partners and local implementing NGOs with the Sonagachi program in Kolkata, which has more than two decades experience of providing services for sex workers and promoting their interests.15, 16 Sex workers themselves largely ran the program. Visits to Sonagachi and other strong community groups in India helped Avahans community leaders see what people like themselves had accomplished; they began to feel that they, too, could change their lives. These connections highlight the way Avahan has learned from Indian CBOs, NGOs, and government initiatives and adapted and incorporated approaches that have been shown to work.

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Enterprise and CBO Sustainability


Some CBOs engage in economic activities to increase their revenue and build sustainability. In Mumbai, Jagruti Mahila Sanstha CBO has tried selling incense as a fundraising activity. The CBO members buy incense sticks, add value by applying scent, and then sell the sticks at a 50 percent profit. Initial sales were slow, but the CBO is now in discussions with more than 20 state government cooperatives to manage sales. Another recent income-generating initiative in Mumbai is Aastha Enterprise, operated by Aastha Parivaar, a federation of 14 CBOs. The business markets two cosmetic products at affordable prices to sex workers and other community members. The goal is to generate sufficient income to help finance the federation and provide profit to the women who sell the cosmetics.

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For more established CBOs, a grant agreement from the lead implementing partner is the funding mechanism. The one- or twoyear grants are based on CBO proposals and cover office rent, salary for staff, and funding for specific project activities. CBOs receive 5 percent of a grant for management costs. The goal for all Avahan CBOs is that they will become sufficiently well-managed to acquire funding for internal management and project implementationwhether for prevention services or to provide external accountability and undertake advocacythrough state-level networks of CBOs.17 Support networking: Over time, CBO members speak of their desire to move from the margins to the mainstream of Indian society. Being seen at public events and contributing to community services and improvements are parts of their legitimizing strategies. Lead implementing partners and NGOs help build CBOs capacity to participate as stakeholders. Particularly important is facilitating effective and regular interactions with government officials. This helps the community gain recognition as a constituency with legitimate rights and needs. NGO staff may accompany CBO members to meetings with police officers or administrative officials and coach them beforehand on how best to interact with them. NGOs have also brokered agreements so that community members now sit on government committees and commissions, giving them the opportunity to understand the policy process and advance a long-term community agenda. In general, highly marginalized communities will not be invited into these spaces without the sponsorship of an NGO or influential government leader, but once there, they may gain more recognition as a voice worth listening to.

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Manage the program across states: If a program is to operate at scale (i.e., across a variety of regions or states), community mobilization must be implemented as a relatively standardized component so that it can be managed efficiently and lessons can be more easily shared from one area to another. Avahan has incorporated the operational components required for community mobilization as part of its management guidelines, the Common Minimum Program, which aims to build a shared vision and define a set of operating standards for the program across all six states.18 The Common Minimum Program establishes a common structure, direction, and standards for lead implementing partners and implementing NGOsboth for HIV prevention interventions and for supporting community empowerment and ownership. Even while seeking to maintain a common set of measurable standards across the program, flexibility should be retained to take into consideration different social conditions, as well as implementing partners own experience working with communities. When specific approaches tried in one implementing partners program are found to be effective and replicable, they can be incorporated into the overall strategy, and guidance on implementation can be provided to other partners in the program.

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PROGR AM INPUTS

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Program Outcomes

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PROGR AM INPUTS

HIV prevention: A central role of CBOs is to sustain safe-sex behaviors among members and the wider communities in which they live and work. While HIV rates have fallen in the districts in which the Avahan program has operated, it is challenging to establish a direct causal relationship between community mobilization and decreases in HIV rates. However, research from across Avahan has shown associations between high levels of collectivization and condom use among FSWs and HR-MSM.19 Similarly, there is an association between increases in condom distribution and reductions in STI rates as community members gain greater confidence in services and providers.20, 21 Peer outreach workers have gained experience and confidence by serving as a critical link between community members and HIV prevention services. The program has supported them in becoming leaders for their community, facilitating activities that help community members coalesce into informal groups. These groups became the foundation for many of the CBOs that have since formed. Crisis response systems and legal literacy training: Across the six states where Avahan works, crisis response systems have provided community members with experience tackling immediate problems and standing up to authorities and other stakeholders who previously intimidated them. These systems and related advocacy, legal literacy, and sensitization work have helped to dramatically reduce the number of reported crises. The systems have also become more efficient. Experience gained in crisis response means that many incidents can now be handled by a single person rather than an entire group.

PROGR AM OUTCOMES

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In Mumbai and Thane, once the rapid response system was seen by sex workers to work, there was an initial increase in reported crisis incidents, reaching nearly 9,000 in the second quarter of 2008 one-third of which involved police arrests of FSWs. However, by the last quarter of 2009, the number of reported crises had fallen by one-third from the earlier high, and police arrests amounted to just over 20 percent of casesa change which is attributed in part to the programs efforts.vi Similarly, the CBOs discussions with authorities at health facilities have resulted in speedier and better treatment from health providers. Governance and leadership: A monitoring survey of CBOs designed and implemented by an outside organization suggests a diversity of stages of maturity among groups. In the first round of the survey, conducted in 20082009, nearly three-quarters of the CBOs were assessed as being in the early stages of maturity in internal decisionmaking and governance processes. Fewer than half were rated as being strong in providing leadership for planning and organizing events. However, more than three-quarters of the CBOs were generating their own financing (albeit not in sufficient amounts to sustain activities) and were judged to be capable of operating on their own, without the regular involvement of the local implementing partner in the CBOs internal operations.vii Government recognition: One benefit of official recognition for some CBOs has been invitations to sit on government committees. This enables community members to conduct focused advocacy and lobbying on specific issues with government officers.

vi  Data from FHI 360 crisis response monitoring from Mumbai and Thane, 20072009. vii  Data generated by PraxisInstitute for Participatory Practices in the baseline round of an annual, Avahan-funded assessment of the community development process.

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PROGR AM OUTCOMES

The process of registering was important not only to gain official recognition, but because it gave CBO office bearers and members experience in interacting with government bureaucracy. Conversely, a CBO in Ananthapur District of western Andhra Pradesh invites senior government officials to its annual general meetings, thereby establishing legitimacy and credibility. Educational aspiration: Many FSWs are motivated by the ambition for their children to overcome the barriers their mothers have faced. A frequently expressed hope of FSWs is that their children will go to school, receive a good education, and be able to either marry well or obtain a good job. This is often why FSWs, many of whom are single parents or the sole breadwinner in the household, continue in sex work. Schooling in India is very competitive, and doors can close quickly when officials realize a childs parent is a sex worker. Some CBOs have become adept at interacting with school officials to cut through red tape to gain places for individual children. One CBO in northern Karnataka insists that the children of all its members attend school, and members visit parents before the school term begins to ensure that the children will be ready. This action has the potential to break the cycle whereby lack of education leads to impoverishment and for young womenentry into sex work seems the only viable economic option. Collective agency: A visitor to a CBO may be struck by the sense of cohesion that exists among its members. CBO members talk in terms of unity, solidarity, and collective agency when they discuss the changes that have occurred in their lives. They take pride in their individual personal change and have a deep sense of accomplishment in creating organizations that represent and serve their interests.

PROGR AM OUTCOMES

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Education and Non-Discrimination


Several CBOs are already engaged in fundraising from local businesses and wealthy individuals. In one interesting example of fundraising, a CBO in Ananthapur District, Andhra Pradesh, sought to raise funds to buy school uniforms and books for the children of FSWs. A donor agreed to purchase uniforms for the students. However, the CBO worried that this would identify them as children of FSWs and make them vulnerable to stigma and discrimination. As a solution, the CBO negotiated successfully with the donor to provide uniforms and books for all the neighborhood children who attended the school.

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PROGR AM OUTCOMES

COLLECTIVE AGENCY is a term adopted by the Avahan program to refer to the choice, control, and power that marginalized individuals and communities have to act for themselves to claim their civil, political, economic, social, and cultural rights and hold others accountable for those rights.

For example, members of Jagruti Mahila Sanitha in Mumbai talked about once feeling isolated and scared, the stigma they experienced when seeking healthcare, the threats from police and gangs, and their ignorance about safe sex. Within the context of the Avahan program, and especially since the founding of their CBO, they have gained new confidence and self-esteem and a readiness to represent their interests in the world. In the words of one of their members, they present a united front toward the police, and harassment has steadily diminished. Individual agency: Many peer outreach workers feel that their individual inputs and achievements contribute to the programs objectives and to the well-being of their communities. They have a sense of responsibility toward their peers and are engaged in processes of behavior change on a personal level. They feel ownership of the project because their leadership and their ability to help deliver outreach services are respected. Defining a wider development agenda: Increasingly, CBOs are taking up issues that are of concern not only to their members but also to the wider community in which they work and live. For example, Chaitangya Mahila Sangha in Bagalkot town, Karnataka, brought community concerns about the water supply and sanitation to the attention of a local councilor in order to get improvements for the entire town.

PROGR AM OUTCOMES

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06

Looking to the Future

46

Community mobilization is a cornerstone of Avahans plans for assuring the long-term sustainability of HIV prevention in India. While the clinical and commodity components of the Avahan
program will be taken over by national and state government bodies by 2013, it will fall to communities to continue to sustain demand for services as well as the norms of safe sexual practices. Avahan has anticipated this by building the capacity of CBOs to manage their own affairs. Training and technical assistance are provided in organizational development, leadership, financial management, governance, advocacy, and networking. One test of each CBO will be its ability to reach and motivate new sex workers to fully use HIV prevention services and support or participate in the CBOs work. CBOs must give attention to several areas, supported in the short term by technical assistance from Avahan. Thinking long term: The ability of CBOs to take on issues that are of community-wide concernrather than those promoted only by the loudest voicesis critical to staying relevant to their members. When CBOs act on longer-term community issues, it increases their stature and widens their influence. This in turn improves their ability to raise funds locally for activities and projects that local donors understand. This approach marks a degree of sensitivity and sophistication that bodes well for the future.

LOOKING TO THE FUTURE

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Engaging with the state: CBOs have developed at least a basic ability to engage effectively with the health system and health providers, with police, and with other government departments. While most public providers have shown a degree of openness to working with communities, brokering may be needed by established community leaders to open doors for these marginalized communities, as well as ongoing work to keep lines of communication open. Some public officials and officers still retain a conscious or unconscious bias against marginalized communities, and navigating bureaucracies is no small endeavor. On the other hand, it is this kind of challenge that can keep CBOs actively engaged.

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LOOKING TO THE FUTURE

Advocating for change: While CBOs can advocate for changes in structural conditions, the policies, programs, and processes of government will require both grassroots and higher-level advocacy if they are to change. CBOs may have little control over the political and economic conditions and processes that shape their work and their members lives. However, the data collection and advocacy skills that CBO members have gained through peer outreach and crisis response can be combined with networking with other groups to inform and influence decision makingat least on local conditions and issues. Networking for strength: Networking means forming links with other organizationsnot just in the sex worker or HIV/AIDS fields but also those dealing with micro-finance, womens livelihoods and rights, human rights, education, employment, and similar development issues. Temporary or longer-term coalitions offer CBOs opportunities to learn from the experiences of other groups while increasing their power around specific themes and issues. Planning for longevity: At this point, CBOs are highly motivated and energized. In two or three years, some of that energy may begin to wear off. New ideas, new issues, new approaches, and the fostering of new leadership will be needed to keep members fully motivated and engaged. Funding will be a critical issue for CBOs. Avahan is creating a series of district- and state-level networks for CBOs. The networks will solicit funds from government and donor agencies to distribute to local CBOs. Small-scale fundraising already occurs at local levels, but more substantial sources of funding will be required for CBO administration and local projects.

LOOKING TO THE FUTURE

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Conclusion
When CBO members are asked about the changes that CBOs have brought to their lives, they speak of greater access to basic services, a new self-confidence in taking on difficult issues, and a greater sense of what is achievable. Community mobilization has strengthened their agency, individually and collectively. A transgender member of a CBO in Mumbai reflected the confidence shared by others when she said, We now go to hospitals and demand treatment. Earlier, people would not even speak with us. Just because I am a hijra [transgender] does not mean I have no rights.22 Complex social change requires programmatic input, and Avahan has both provided this input and helped communities to create it for themselves. CBOs drive demand for services to enable community members to protect themselves from HIV infection. They address structural issues such as violence and practical concerns such as access to government services. And they provide community members with opportunities for greater self-fulfillment and a collective means to improve their lives and those of their children and other family members. The stories presented in this publication can help us appreciate the changes that have occurred in the lives of community members. For them, freedom has taken on tangible meanings, and their CBOs continue to provide the means to sustain and widen those freedoms. In this sense, Avahan has become a development program and not just one for public health.

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CONCLUSION

Development consists of the removal of various types of unfreedoms that leave people with little choice and little opportunity of exercising their reasoned agency.
AMARTYA SEN23

All of the changes arising from community mobilization contribute to an environment in which HIV prevention is a long-term reality, not just a temporary fix. Avahan is generating data that link community mobilization with sexual behavior changes and changes within the organizational functioning of CBOs.19 Meanwhile, qualitative findings such as those presented here show that from the perspective of community members, the causal path is clear: community mobilization and HIV prevention are leading to new hope that they and their children can have better lives. CBOs take seriously not only what they have accomplished but also the challenges ahead of them. They see their futures shaped by their own skills, leadership, and energy, without also ignoring the bigger structural issues that confront them. Their experiences suggest that community mobilization can be undertaken deliberately by an HIV prevention program and that it can be a foundation for ensuring that communities sustain their demand for existing clinical components of HIV prevention, as well as their commitment to behavior change, well into the future.

CONCLUSION

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Additional Resources

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ADDITIONAL RESOURCES

3B and 3S, The Crossing Over A Migration Study Report: Understanding of the Issues, Dynamics and Concerns of Migrant Female Sex Workers at the Destination and Source. Bangalore: Karnataka Health Promotion Trust, 2010. Blankenship K, et al. Factors associated with awareness and utilisation of a community mobilisation intervention for female sex workers in Andhra Pradesh, India. Sexually Transmitted Infections 2010; 86(Suppl 1):i69i75. Community Mobilisation for Female Sex Workers. Bangalore: Karnataka Health Promotion Trust, 2009. Campbell C. Letting Them Die: Why HIV/AIDS Prevention Programmes Fail. London/Bloomington: International African Institute/Indiana University Press, 2003. Lipovsek V, et al. Increases in self-reported consistent condom use among male clients of female sex workers following exposure to an integrated behaviour change programme in four states in southern India. Sexually Transmitted Infections 2010; 86:i25i32. Sarkar S. Community engagement in HIV prevention in Asia: going from for the community to by the communitymust we wait for more evidence? Sexually Transmitted Infections 2010; 86:i2i3. Use It or Lose It: How Avahan Used Data to Shape Its HIV Prevention Efforts in India. New Delhi: Bill & Melinda Gates Foundation, 2008.
1

Global Report: UNAIDS Report on the Global AIDS Epidemic. Geneva: Joint United Nations Programme on HIV/AID (UNAIDS), 2010.

ADDITIONAL RESOURCES

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References
1

Managing HIV Prevention from the Ground Up: Avahans Experience with Peer Led Outreach at Scale in India. New Delhi: Bill & Melinda Gates Foundation, 2009. Blankenship K, et al. Structural interventions: concepts, challenges and opportunities for research. J Urban Health 2006 January; 83(1):5972. Blankenship K, et al. Challenging the stigmatization of female sex workers through a community-led structural intervention: learning from a case study of a female sex worker intervention in Andhra Pradesh, India. AIDS Care 2010; 22(Suppl 2):16291636(8). Reed E, et al. The context of economic insecurity and its relation to violence and risk factors for HIV among female sex workers in Andhra Pradesh, India. Public Health Reports 2010; 125(Suppl 4):8189.

AvahanThe India AIDS Initiative: The Business of HIV Prevention at Scale. New Delhi: Bill & Melinda Gates Foundation, 2008. Rau B. The Avahan India-AIDS Initiative. Arlington, USA: AIDSTAR-One, 2011. www.aidstarone.com/sites/default/files/AIDSTAR-One_case_study_combination_prevention_avahan.pdf.

Fernandez AP. History and spread of the self-help affinity group movement in India. Rome: International Fund for Agricultural Development, 2006. Deininger K and Liu Y. Economic and Social Impacts of Self-Help Groups in India. Washington, DC: World Bank, 2009. Self-Help Groups Empower 8 Million Women in Andhra Pradesh. World Bank News and Broadcasts, March 8, 2007. http://go.worldbank.org/EKSDT8O7T0 www.sewa.org

10 11

Tripathy P, et al. Effect of a participatory intervention with womens groups on birth outcomes and maternal depression in Jharkhand and Orissa, India: a cluster-randomised controlled trial. Lancet 2010; 375(9721):118292. Baqui AH, et al. Effect of community-based newborn-care intervention package implemented through two service-delivery strategies in Sylhet district, Bangladesh: a cluster-randomised controlled trial. Lancet 2008; 371(9628):1936-44.

12

54

REFERENCES

13

The Power to Tackle Violence: Avahans Experience with Community Led Crisis Response in India. New Delhi: Bill & Melinda Gates Foundation, 2009. Community Led Crisis Response Systems: A Guide to Implementation. New Delhi: Bill & Melinda Gates Foundation, 2009.

14

15

Jana S, et al. The Sonagachi Project: a sustainable community intervention program. AIDS Education and Prevention 2004; 16(5):40514. Swendeman D, et al. Empowering sex workers in India to reduce vulnerability to HIV and sexually transmitted diseases. Social Science and Medicine 2009; 69(8):115766. Epub 2009 Aug 28.

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17

Rau B. Forming Networks of Community-Based Organizations: Early Experiences from the Avahan India AIDS Initiative. Washington, DC: Futures Group, 2013. Avahan Common Minimum Program for HIV Prevention in India. New Delhi: Bill & Melinda Gates Foundation, 2010. Saggurti N, et al. Community collectivization and its association with consistent condom use and STI treatment seeking behaviors among female sex workers and high-risk men who have sex with men/transgenders in Andhra Pradesh, India. AIDS Care 2013; in press. Blankenship K, et al. Power, community mobilization, and condom use practices among female sex workers in Andhra Pradesh, India. AIDS 2008; 22(Suppl 5):S109S116.

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21

Ramesh BM, et al. Changes in risk behaviours and prevalence of sexually transmitted infections following HIV preventive interventions among female sex workers in five districts in Karnataka state, south India. Sexually Transmitted Infections 2010; 86(Suppl 1):i17i24. Aastha Has taught Us Everything. Mumbai: Family Health International, 2010. Sen A. Development as Freedom. New York: Knopf, 1999.

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23

REFERENCES

55

56

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Rau, Bill. 2013. From Isolation to Solidarity: How community mobilization underpins HIV prevention in the Avahan India AIDS Initiative. Washington, DC: Futures Group. ISBN 978-1-59560-012-7 Futures Group One Thomas Circle, NW, Suite 200 Washington, DC 20005 U.S.A. tel: +1.202.775.9680 fax: +1.202.775.9698