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JAIDS Journal of Acquired Immune Deficiency Syndromes:
doi: 10.1097/QAI.0b013e31825d0383
Supplement Article

The Expanding Role of Civil Society in the Global HIV/AIDS Response: What Has The President's Emergency Program For AIDS Relief's Role Been?

Coutinho, Alex MD, MPH, FRCP*; Roxo, Uchechi; Epino, Henry‡,§; Muganzi, Alex MD, MPH*; Dorward, Emily; Pick, Billy

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Author Information

*The Infectious Diseases Institute, Makerere University, Kampala, Uganda

US Agency for International Development, Washington, DC

Department of Emergency Medicine, Massachusetts General Hospital, Boston, MA

§Division of Global Health Equity, Brigham and Women's Hospital, Boston, MA.

Corresponding to: Alex Coutinho, MD, MPH, FRCP, The Infectious Diseases Institute, Makerere University, PO Box 22418, Kampala, Uganda (e-mail: acoutinho@idi.co.ug).

AC and AM both work for The Infectious Diseases Institute, which receives funding from PEPRAR.

All other authors have no funding or conflicts of interest to disclose.

The findings and conclusions in this article are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention, the US Government, or the World Health Organization.

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Abstract

Abstract: Civil society has been part of the HIV/AIDS response from the very beginning of the epidemic, often becoming engaged before national governments. Traditional roles of civil society—advocacy, activism, serving as government watchdog, and acting as community caretaker—have been critical to the response. In addition, civil society organizations (CSOs) play an integral part in providing world-class HIV prevention and treatment services and helping to ensure continuity of care. The President's Emergency Program for AIDS Relief (PEPFAR) has significantly increased the global scale-up of combination antiretroviral therapy reaching for more than 5 million people in developing countries, as well as implementation of effective evidence-based combination prevention approaches. PEPFAR databases in 5 countries and annual reports from a centrally managed initiative were mined and analyzed to determine the numbers and types of CSOs funded by PEPFAR over a 5-year period (2006–2011). Data are also presented from Uganda showing the overall resource growth in CSO working for HIV. Case studies document the evolution of 3 indigenous CSOs that increased the capacity to implement activities with PEPFAR funding. A legacy of PEPFAR has been the growth of civil society to address social and health issues as well as recognition by governments that partnerships with beneficiaries and civil society result in better outcomes. Scale-up of the global response could not have happened without the involvement of civil society and people living with HIV. This game changing partnership to jointly tackle the problems that countries face may well be the greatest benefit emerging from the HIV epidemic.

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INTRODUCTION

Since the beginning of the HIV epidemic in 1981, civil society has been consistently at the forefront in responding to the needs of those infected and affected with HIV and AIDS.1 In the United States, it was families and friends of the very first cases of people living with HIV (PLHIV) who mobilized needed community care, later coalescing in organizations like the Gay Men's Health Crisis in New York City, and the Shanti Project and San Francisco AIDS Foundation in San Francisco. Groups of PLHIV, such as AIDS Coalition To Unleash Power, spearheaded advocacy efforts directed at government and the scientific establishment to gain increased funding for research on the disease.2,3 In the United Kingdom, the first cases of HIV triggered a similar response from existing organizations that had fought for gay rights, resulting in the establishment of the Terrence Higgins Trust.4

This pattern also occurred in Brazil where mobilization by civil society and PLHIV, partnering with a new democratic government, led to successes in both HIV prevention and treatment.5 Despite Brazil's strong Catholic heritage, a public health breakthrough occurred through condom use promotion linked to efforts to legitimize and partner with marginalized groups including sex workers (SW) and men who have sex with men (MSM). As the epidemic came to be recognized in Africa in the early 80s, countries like Uganda saw an emerging civil society response, exemplified by organizations such as The AIDS Support Organization (TASO).6 These organizations took on the task of destigmatizing HIV and ensuring dignity and compassion in care for PLHIV. The next epidemic wave, focused in southern Africa, led to the formation of groups like the Treatment Action Campaign in South Africa leading the fight to hold their governments accountable to provide citizens with necessary HIV/AIDS treatment and services.7 In the case of both Uganda and South Africa, individuals who were themselves HIV+ were key to the success and growth of the movement.

The history of civil society in developing countries before the HIV epidemic was limited largely to issues of political, social, and economic rights. However, civil society—in particular, faith-based organizations (FBO)—have had a large role in providing health services in Africa, with FBOs providing up to 50% of health services in some countries.8 The emergence of HIV highlighted deficiencies in health systems, which were incapable of responding to a fatal disease that had no cure and limited treatment options, one which affected mainly sexually active adults, and required extensive education, counseling, and destigmatization, as well as home-based care and palliative services. As effective treatments emerged and were rolled out, HIV/AIDS became a potentially chronic “manageable” disease. The health system was faced with the challenge of providing long-term care in the form of specialized clinics, routine laboratory monitoring, adherence support, and the need to move services closer to communities. The challenge of orphans and vulnerable children (OVC) required a concerted community response.

It soon became clear to governments that any HIV campaign had to engage the entire society to achieve success. In generalized epidemics, governments had engaged with civil society to spread the early prevention messages—“AIDS kills,” “love carefully,” “zero grazing,” and later ABC (abstinence, be faithful, condoms). This period also saw the emergence of key individuals who were HIV+, who spearheaded awareness and destigmatization campaigns. Their example and courage often led to the formation of organizations for PLHIV, which often started as solidarity and support groups and gradually increased their scope of work and responsibilities to provide care and support. In concentrated epidemics, where HIV was found predominantly in marginalized groups, such as MSM, people who inject drugs (PWID), and SW, government engagement with civil society was more problematic.

Since the United Nations General Assembly Twenty-Sixth Special Session (UNGASS), the world has witnessed the emergence of large funding mechanisms to combat HIV—the expansion of the World Bank Multi-country HIV/AIDS Program (MAP), the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) in 2002, and President's Emergency Program for AIDS Relief (PEPFAR) in 2003.9 These have led to increased global scale-up of combination antiretroviral therapy reaching more than 5 million people in developing countries, as well as implementation of effective evidence-based combination prevention approaches, such as ABC, prevention of mother-to-child transmission (PMTCT), medical male circumcision (MMC), harm reduction for PWID, and now, treatment as prevention.10,11 This scale-up could not have happened without the involvement of civil society and PLHIV at every level.

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METHOD

The authors reviewed relevant literature on the role of civil society in responding to HIV/AIDS. For the purposes of this article, civil society was defined as “ international and national nongovernment organizations (NGOs), faith-based organizations and community-based organizations as well as other nonstate actors such as the media, youth and women's organizations and organizations of people living with HIV/AIDS.” PEPFAR databases in 5 countries and annual reports from a centrally managed initiative were mined and analyzed to determine the numbers and types of civil society organizations (CSOs) funded by PEPFAR over a 5-year period (2006–2011). These data were used to determine the trends in the proportion of international to national CSOs operating in these 5 countries during this period. Additional detailed data were obtained from Uganda to determine specific areas funded by PEPFAR in the previous 6 years. Data are also presented from Uganda showing the overall growth in CSO working for HIV receiving funding from any source. We also present data from PEPFAR's New Partners Initiative (NPI), launched in 2006 to fund new indigenous CSO partners and build their capacity through international CSO subgranting to local CSO. Case studies document the evolution of 3 indigenous CSOs that increased the capacity to implement activities with PEPFAR funding.

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FINDINGS

There are numerous qualitative reports documenting CSOs contributions through PEPFAR to mitigating the HIV epidemic. There are surprisingly little quantitative data, and what data are available are difficult to subject to trend analysis as definitions of numerators and denominators changed over time. There was also insufficient data available to attribute specific impacts to funds received by CSOs in some of the countries analyzed.

Most countries show an increased investment by PEPFAR in CSOs over time. A comparison of funding trends in 5 countries—Ethiopia, Haiti, Uganda, Vietnam, and Zambia—(Fig. 1) show increases in PEPFAR resources from 2006 to 2009. All countries (with the exception of Uganda which, already had high funding levels) saw a doubling or tripling of PEPFAR support to local partners.

Figure 1
Figure 1
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The data in Figures 2A and B show that between 2007 and 2010, the number of CSOs in Uganda reporting activity in various areas of HIV/AIDS increased. The greatest increase was in treatment with a staggering 2000 organizations involved in some aspect of care and treatment support. However, as only data for 2007 and 2010 are reported, this reflects the limitations of the available data.

Figure 2
Figure 2
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Figure 3 indicates that the amount of PEPFAR funding to indigenous organizations in Uganda increased 2.5-fold between 2007 and 2011. In 2011, $155,154,688 was directed to indigenous entities—the majority of which are CSOs.

Figure 3
Figure 3
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The NPI was designed to identify and strengthen new prime CSO partners. Since December 2006, 56 cooperative agreements have been awarded to indigenous (35%), US-based (44%), and other international (21%) organizations to provide a wide variety of HIV/AIDS services (Table 1). Almost 95% of the grantees have secured other funding to continue either all or a portion of their programs.

Table 1
Table 1
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EXAMPLES OF CIVIL SOCIETY PARTNERSHIPS

Uganda

TASO was established in 1987 by a group of HIV-infected and affected Ugandans primarily to provide a support group and palliative care to its HIV+ membership. Between 1987 and 2002, TASO was primarily involved in advocacy activities, information education and communication, counseling and palliative care, community mobilization and empowerment, and HIV prevention campaigns. With the advent of significant funding from PEPFAR and later the GFATM, TASO has diversified and expanded into new areas. In addition to the previously mentioned activities, TASO is providing care and treatment to 100,000 HIV+ of whom 24,000 are on ART. TASO is a key player in the national scale-up of HIV testing and counseling using both facility and community approaches. TASO also provides services for OVC, nutritional supplementation, and more recently is introducing PMTCT and MMC services. TASO has also provided services to various key affected populations including prisoners, uniformed services, disabled persons, and mobile men with money. SW and MSM who face discrimination in Uganda are also assured of equal access to services in TASO with no pressure to reveal their affiliations. A key success factor for TASO has been the active involvement of its HIV+ members at every level of the organization, including participating in all key national decision bodies like the Uganda AIDS Commission and the Global Fund Country Coordinating Mechanism. TASO has leveraged its tremendous experience to become one of the largest training organizations in Africa with more than 4000 trainees from all over Africa trained in 2010.6

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Vietnam

CSOs, in the Western sense, are relatively undeveloped in the Vietnamese context, and as such do not yet have a well-established voice or place in the national response.16 This has been particularly true in the case of PLHIV. In January 2003, 11 PLHIV came together to form the Bright Futures group in Hanoi. Later that year, PEPFAR funded the first workshop for PLHIV self-help groups in Vietnam. This meeting resulted in Bright Futures being awarded its first grant through PEPFAR. With this support, Bright Futures developed into a network that has 22 branches in 14 provinces and approximately 2000 members. Its core members, once the recipients of technical assistance, now manage their own program activities and budgets and serve as trainers to build the capacity of fellow PLHIV.

Soon thereafter, Bright Futures took the lead in establishing the national PLHIV network. Support from PEPFAR and UNAIDS resulted in the formation of the Vietnam Network of People Living with HIV/AIDS (VNP+). VNP+ is run by and for PLHIV, advocates for the rights of positive people including access to treatment, care, and support to fight stigma and discrimination, and is involved in the prevention interventions. It includes approximately 128 smaller networks and self-help groups, reaching approximately 8000 members. With continued PEPFAR support, VNP+ provides a transparent framework for PLHIV to select members to national policy-making bodies, such as the Global Fund Country Coordinating Mechanism. Such representation is crucial for encouraging meaningful civil society engagement and good governance in Vietnam.17

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Botswana

The Botswana Retired Nurses Society was started in 1999 by nurses formerly employed by the government. They received an NPI grant from December 2008 to February 2012, to provide holistic, palliative, and home-based care and support to PLHIV. Their work has been recognized by the Botswana Government and illustrates an approach to address gaps in the trained health workforce, barriers to services for hard to reach groups in the community, and an approach to scaling up sustainable family-centered programming for children and OVC as members of their communities. Under NPI, the Botswana Retired Nurses Society received technical assistance and support to expand geographically and grew organizationally through improved financial management system, staff development/leadership, and performance. This is an innovative example of a valuable resource (retired nurses and PLHIV volunteers) providing an essential HIV/AIDS service while developing indigenous capacity to promote the sustainability of host nations' efforts.18,19

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DISCUSSION

Civil society involvement and engagement in HIV/AIDS in a number of countries clearly predated major sources of global HIV funding, including PEPFAR. Early experiences of civil society involvement in countries like Brazil and Uganda served as templates as global programs were being designed and rolled out elsewhere. The resulting involvement of civil society and PLHIV in large-scale public health programs was codified at UNGASS in 2001 when the Declaration of Commitment specifically highlighted expected collaborations and partnerships with civil society and also established annual benchmarks and indicators that countries had to report on ensuring that civil society was not left behind.20 With the advent of increased resources from PEPFAR, as well as MAP and GFATM, national systems were challenged to absorb these funds. One way to increase absorptive capacity and obtain results was to grant significant amounts of funds to civil society—initially through international NGOs, but over time increasingly to local civil society—while insuring that they delivered services consistent with national strategic responses.

PEPFAR was committed to aligning its resources to rapidly scale-up new interventions like point of care HIV testing, algorithmic ART scale-up, HIV/TB integration, accelerated PMTCT interventions, and MMC, in addition to the well-established interventions like ABC, care and treatment, and OVC programming. This stimulated both international and local CSOs to develop skill sets to translate new knowledge in to large-scale public health programs.

Data presented in Figure 1 demonstrates the significant increases in PEPFAR funding in 5 focus countries over a 5-year period. Figures 2A and B give an example of increased funding to indigenous organizations involved in HIV/AIDS in Uganda, showing an increase of >50% over a 3-year period from 2007 to 2010 with organizations that provided care and treatment increasing by a factor of 10. Figure 3 shows how this funding resulted in CSOs in Uganda being responsible for >60% of downstream outputs like HIV testing, condom distribution, and numbers on treatment. The 3 case studies demonstrate how, as a result of additional PEPFAR resources, technical assistance and new scientific knowledge, indigenous CSOs were able to form, diversify and provide a much broader range of HIV services, including capacity building of other CSOs and delivery of services closer to the community.

PEPFAR support for CSOs has not been without its shortcomings. Many countries do not fully support efforts aimed at marginalized key populations such as MSM, SW, and PWID. In the original PEPFAR authorizing language, MSM and intravenous drug use were only mentioned in terms of efforts for “assistance to help avoid substance abuse and intravenous drug use.”21 Regarding SW, PEPFAR created the “anti-prostitution pledge” stating that funds authorized in the legislation could only be provided to organizations having policies “explicitly opposing prostitution and sex trafficking.” This had a chilling effect in that a number of CSOs that worked successfully with SW refused PEPFAR funding. The reauthorization of PEPFAR mitigated some of the earlier neglect of these populations by including policy and programmatic changes explicitly acknowledging the need for evidence-based prevention and treatment services for key populations.

An emerging phenomenon has been the greater involvement of CSOs in health system strengthening through a variety of mechanisms, including direct provision of health services by NGO/FBOs through their own health facilities or by civil society providing technical assistance to national and district hospitals in improving laboratory, pharmaceutical, and data systems.22 This new government–CSO partnership approach has resulted in greater synergies as resources can be channeled directly to the district level to improve systems and provide resources for service delivery scale-up.23

Thus, PEPFAR, by providing significant resources, has allowed for a concomitant increase in the skill sets and capacity of local CSOs and communities to successfully undertake a range of interventions in HIV/AIDS. New networks, under the leadership of some of the top HIV/AIDS experts and development practitioners in Africa, are on the rise, renewing increased commitments to better harness and utilize tools, approaches, and host country talent.24

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CONCLUSIONS

Civil society has been part of the HIV/AIDS response from the very beginning of the epidemic, often becoming engaged before national governments. Furthermore, the experiences of pioneer CSOs have been extended and translated to countries across the globe as part of the scale-up of HIV/AIDS programs. Responses funded by MAP, GFATM, PEPFAR, and host governments could not have happened at the same pace and intensity without the involvement of civil society and PLHIV. In the process of scale-up, some CSOs grew and were transformed from organizations largely focusing on advocacy, activism, and community care to become large-scale providers of HIV prevention, care, and treatment and OVC programs, contributing significantly to overall health systems strengthening.

As CSOs have developed new roles and competencies, they also encountered new challenges and dilemmas. Traditionally, the role of CSOs has been to hold governments accountable to their populations. By becoming integrated into the health delivery system, CSOs risk losing their objectivity, thereby weakening the overall response. CSOs must continue to play the role of societal watchdog, being careful not to relieve governments of their duty to provide equitable and quality health services. Securing adequate resources while maintaining independent identities, ensuring quality interventions and meaningful involvement of communities, and addressing weak governance, and financial management structures while improving their own capacities to program funds to respond to clients changing needs are some of the dilemmas continue to affect many CSOs. Governments in turn need to learn how best to work with CSOs and tap their strengths as well as put in place democratic coordinating mechanisms to allow all players to contribute to the national response efficiently.

Despite the progress that has been made in scaling up HIV activities, there remain critical gaps in overall population coverage as well as for specific groups. For many countries, coverage for key programs such as treatment access and PMTCT was all below the UNGASS and Millennium Development Goals targets. Governments and CSOs must cooperate and utilize their respective strengths and resources to close these gaps. In some countries, governments, in collusion with certain segments of society, undertake misguided efforts to block programs designed to reach marginalized groups through discriminatory policies and criminalization statutes. Civil society should be supported to provide the necessary services to prevent HIV and provide appropriate care and treatment programs for these populations and to advocate for reform of adverse policies and legislation. PEPFAR can play a crucial role in advancing the rights and participation of key affected populations through support to CSOs. The Institute of Medicine review of PEPFAR recommended that PEPFAR document the level of engagement of civil society, including members of key populations, in PEPFAR-related national planning bodies and other health planning activities.25

The experiences of CSOs in scaling up responses to HIV/AIDS are already being harnessed to address other social and health conditions, for example, maternal and child health programs in Zambia and Uganda through the USG Global Health Initiative.26,27 The key ingredients to success are the establishment of a true partnership between governments and CSOs, capacity building and delineation of roles based on the strengths of each entity, and sufficient resources to start and sustain large-scale responses.

The next few years represent a watershed for further scale-up of HIV services and the adaptation of new operational research and scientific discoveries. It is important to keep in mind the needs posed by the growing numbers of PLHIV. It will be important for CSOs supported by PEPFAR to identify and implement evidence-based interventions to address patient needs to maximize the benefit of HIV care and treatment and to improve overall health and well-being.

Traditional roles of civil society—advocacy, activism, government watchdog, and community caretaker—continue to be relevant and critical. CSOs are part of the fabric of a country's health system and play a critical role in helping to ensure continuity of care from health facilities to the community and providing world-class HIV prevention and treatment services, which can serve as indigenous resources for capacity building for existing and new health concerns.

As international funding sources plateau, it is imperative that PEPFAR and the other funding mechanisms shift resources from international to developing country CSOs to build sustainability and improve efficiencies. Concerns that the majority of resources are allocated to large urban CSOs rather than true community-based grassroots organizations must be addressed.28 It will be important to monitor the extent to which resources reach beneficiaries as well as the efficiencies of various recipients so that scarce resources achieve maximum benefit.

An important aspect of the legacy of PEPFAR, MAP, and the GFATM will be the awakening and growth of civil society to address social and health issues as well as recognition by governments that partnerships with beneficiaries and civil society result in better outcomes. This game changing partnership to jointly tackle the problems that countries face may well be the greatest benefit emerging from the HIV epidemic.

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ACKNOWLEDGMENTS

The authors thank Prof Yuka Manabe, Reuben Hewlett and Soulemane Barry from Uganda; Padmaja Shetty from USAID/Ethiopia; Jonathan Ross and Xerxes Sidhwa from USAID/Vietnam for their contributions to this article.

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Keywords:

civil society; PEPFAR

© 2012 Lippincott Williams & Wilkins, Inc.

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