The 2001 Declaration of Commitment on HIV/AIDS (DoC) agreed to by the United Nations (UN) Member States made an explicit call for the full involvement of civil society actors (including people living with HIV) in the planning, implementation and evaluation of HIV programs.1 Although civil society has a long history of advocacy and service provision in HIV,2,3 the Declaration's call provided impetus for renewed attention to the role of civil society. In this article, civil society is defined as voluntary associations of citizens that undertake actions in support of people living with or affected by HIV and AIDS; it does not include profit-making entities (ie, the private sector) or government (ie, the public sector).4
Almost universally, the first response to AIDS came from HIV-positive individuals, their families and communities, who organized themselves to care for those in need.2,5 Community groups then mobilized action from their governments and from the scientific and public health authorities.2,3,6 In many countries, those early civil society initiatives laid the foundations on which national responses would be built.2 Civil society has been at the forefront of promoting respect and protection of people living with HIV and its efforts continue today. This has not been an easy path as many acted in the face of severe discrimination and human rights violations.2,7 As the epidemic has emerged in countries with little tradition of civil society, support of international agencies for AIDS work through nongovernmental organizations (NGOs) has helped to facilitate the practice of grassroots participation and changed attitudes toward vulnerable populations.3,8,9,10
Civil society can augment HIV services provided by the state.3,6 Civil society organizations have played a significant role in the direct provision of HIV-related services due to their presence in or connections with affected communities, especially marginalized groups.3 As public health hospitals became overburdened with AIDS patients in highly affected areas, for example, civil society organizations have assumed responsibilities for health care provision; in many places, they were the pioneers of counseling and of home-based care for the sick.2,11 A survey in 2004 found that NGOs were still the main providers of health care in many African countries with high HIV burdens.12 Their activism also helped to create the foundation for better access to health care and more affordable treatment.6,13 Civil society remains at the forefront of HIV service provision, particularly among the most vulnerable and hard-to-reach populations (such as sex workers, people who use drugs or men who have sex with men) and especially in places where behaviors that put people at high risk for HIV are criminalized.2,3
By setting time-bound targets and by requiring regular reporting on progress, the DoC aimed to promote accelerated outcome-driven HIV responses and achieve greater accountability. Civil society actors can perform an important watchdog role in those endeavours.14-17 UNGASS reporting specifically calls for civil society's active participation in the consultative process leading up to the biennial submission of Country Progress Reports. Thus, it provides a unique opportunity for civil society to be involved in taking stock and in helping determine the way forward for achieving the UNGASS goals. The involvement of both government and nongovernment representatives in the UNGASS reporting process is intended to generate a comprehensive and valid status report.
This article addresses the following key questions:
- What is the status of civil society involvement in national HIV responses and the evaluation of those responses?
- Has the UNGASS reporting process played a role in catalyzing and/or solidifying civil society participation in the evaluation of national HIV responses?
- What is the perceived utility of UNGASS reporting and its participatory approach?
- What lessons can be learned from the UNGASS reporting process to further strengthen civil society engagement?
Several data sources were reviewed and analyzed.
Descriptive analyses were done of the National Composite Policy Index (NCPI) data which 135 countries submitted as part of the 2008 UNGASS reporting round. The NCPI, one of the standardized UNGASS indicators, is an extensive questionnaire that focuses on the strategic policy and legal frameworks of national HIV responses. It includes questions about civil society involvement, and part of the questionnaire is intended to be completed by nongovernment representatives, including civil society. We ascertained which stakeholders (government, civil society organizations, UN and bilateral organizations) participated in completing the NCPI questionnaires. We also gauged the presence of civil society in strategic planning, implementation and evaluation of the HIV response, from the perspectives of both nongovernment representatives and government officials. Trend analysis was conducted on key aspects of civil society involvement for 85 countries for which both 2005 and 2007 NCPI data were available.
A review was conducted of the debriefing report compiled by the International Council of AIDS Service Organizations18 on civil society involvement in UNGASS reporting and the comprehensiveness of the Country Progress Reports. That debriefing report was based on consultations with civil society partners in 40 countries in 5 regions (ie, Africa, Asia and the Pacific, Eastern Europe and Eurasia, and Latin America and the Caribbean).
A review of 3 country case studies was conducted in 2008 by the Harvard School of Public Health19 to gain insight into the nature and value of civil society involvement in the UNGASS process. Brazil, Ethiopia and Vietnam were selected to reflect regional, epidemiological and cultural diversity. A desk review was conducted of available data and relevant reports (such as policy, legal and regulatory documents) from each of the countries. Overall, interviews were done with 82 representatives of government, civil society, and international organizations.
Civil Society Participation in UNGASS Reporting
The NCPI process is intended to be consultative and to include representatives from government, civil society, and UN and bilateral organizations. Information on respondents was provided by 125 of the 135 countries that submitted NCPI data. In almost all of these (98%), consultation with representatives from local NGOs occurred. Overall, representatives from 769 organizations in 122 countries participated. In the majority of countries (77%), civil society respondents outnumbered respondents from UN and bilateral organizations. We therefore refer to the nongovernment respondents as “civil society respondents” in this article. The request for information on NCPI respondents was introduced for the first time in the 2008 reporting round, so trend data are not yet available. Further insights into civil society participation in NCPI reporting can be gleaned from the 3 in-depth case studies summarized in Box 1.
Civil Society Involvement in the National HIV Response
Table 1 provides government responses to specific questions about civil society involvement in key aspects of the HIV response. In 110 countries (89%), the national AIDS coordinating body includes at least 1 civil society representative. Although the key role of this body is to coordinate the HIV response, 1 in 4 governments said they did not provide support to coordinate civil society partners, though almost all (91%) said they had a mechanism in place for promoting interaction between government and nongovernment partners, including the private sector. Overall, there are no outliers, but some regional variation is evident. Civil society was actively involved in the development of a national AIDS strategy in only 63% of countries in Eastern Europe and Central Asia, compared with 90% of sub-Saharan African countries.
Trends for the 85 countries, which submitted both 2005 and 2007 NCPI data (Table 2), show an increase in coordination mechanisms that include civil society. More of those countries now have a national AIDS strategy, but civil society was not consistently included in the development of those strategies. This was confirmed by civil society respondents, which considered their representation in national planning processes to be “good/very good” in just over half of the countries (59%) (Table 3).
The inclusion of support for services provided by civil society in the national AIDS budget was rated “good/very good” in only about 1 in 10 countries (13%). Civil society reported that accessing funding or technical support for HIV program implementation was “good/very good” in 19% and 27% of the countries, respectively. When analyzed by region, these data indicated that South and South East Asia scored consistently lower than the overall average on all items assessed; none of the countries in that region rated access to financial or technical resources as “good/very good”. No trend data are available.
Overall, efforts to increase civil society participation were rated by civil society as above average (a rating of between 6 and 10 on a 10-point scale) in the majority of countries (73%), and most countries (78%) indicated that progress had been made since 2005. (The specific question in Part B of the NCPI is: “Overall, how would you rate the efforts to increase civil society participation in 2007 and in 2005?” A 1-10 (poor to good) point scale is provided to rate efforts in 2007 and in 2005, respectively. An open text box is provided for further comments on progress made since 2005).
The case studies underscored the varying forms of civil society participation and the varying degrees to which governments have formalized that participation. Brazil has a long history of civil society participation in the HIV response.6 Six civil society places are reserved in the national AIDS commission, 1 for each of the 5 regions and 1 specifically for a person living with HIV. These representatives are elected by civil society during the annual forum of AIDS NGOs and serve as an important bridge between government and nongovernment actors in the HIV response. There are also fixed-term civil society committees (funded by the government), which provide input on issues related to the HIV response.
In contrast, civil society in Ethiopia has emerged only in the last 10-15 years and organizations concerned with HIV are an even more recent phenomenon. The National Partnership Forum is the bridge between government and the nascent civil society groupings involved in the national HIV response, and includes government, civil society, the media, the private sector and donor agencies, and is chaired by the government HIV/AIDS Prevention and Control Office.
Civil society in Vietnam is also only recently beginning to organize itself. In the broadest sense, civil society engaged in the HIV response includes mass organizations, local and international NGOs, faith-based organizations, the business sector and self-help groups (ie, organizations for people living with HIV). There are strong relationships between government and a number of organizations deemed to belong to civil society, some of which were created by retired government officials.
Contributing Different Perspectives
Based on NCPI data, Table 4 compares responses to key questions about service implementation that were posed to government and civil society respondents. Overall, civil society's estimates of service implementation were less optimistic than those of government officials, often by a considerable margin (ranging from 7% to 31%).
The 3 case studies seem to support these findings. In several instances, there were strong differences of opinion about which data should be included in the UNGASS report, with governments seeming to favour inclusion of information that showed their HIV responses in the best light.
The civil society review of Country Progress Reports indicated dissatisfaction with the comprehensiveness of several reports, especially in relation to indicator data on most-at-risk populations. It was noted that some countries did not provide such data because they deemed the indicator (and thus the subpopulation) to be irrelevant to the country's epidemic; other countries did not have the data available. The civil society report neither quantified nor named the specific countries where data gaps were identified, but their conclusion is corroborated by the quantitative review of indicator performance included in other articles in this issue.20,21 The report included pertinent examples, including Senegal, where HIV prevalence is low among the general population (0.7%) but high (21.5%) in groups of men who have sex with men.18,22 Yet, Senegal did not provide any data for this subpopulation.
The civil society report also noted examples of inadequate attention to programs for most-at-risk populations in the narrative reports. For example, the 45-page report for China (where HIV particularly affects people who inject drugs) included only 3 lines of mostly quantitative data about needle and syringe distribution. It did not discuss the operation of, or access to, these programs. In the Russian Federation, the community sector provided information relating to injecting drug use (including the stigmatizing practices of some medical doctors), but such issues were not mentioned in the final report. The Thai Treatment Action Group submitted a report that reviewed the impact of the government's “war on drugs,” which has involved harsh penal and extrajudicial measures directed against people who use drugs. However, the government's UNGASS report did not reflect these practices.
Utility of The UNGASS Report and Its Participatory Approach
Discussion with civil society at times has led government to reconsider issues in the national HIV response. For example, the Brazilian government initially considered NCPI questions related to orphans and vulnerable children not to be relevant to the AIDS context. However, pressure from civil society has led to a commitment to study the issues further.
The UNGASS process has helped clarify the value of closer collaboration between government and civil society in the HIV response. In Vietnam, it became clear, for example, that civil society partners had access to information the government was not privy to (such as the stigma and day-to-day challenges faced by orphans and their extended families). The government subsequently set up a more formal liaison mechanism with civil society partners and is in the process of finalizing a Memorandum of Understanding for collaboration. The inability of Ethiopia to report on several indicators related to most-at-risk populations led to an important discussion resulting in the inclusion in the national strategic plan of more activities targeting these subpopulations.
Linked to the UNGASS reporting round in 2006, the International Council of AIDS Service Organizations identified limited awareness of the DoC among civil society groups and limited participation in the review of progress toward its implementation.16 The data reviewed for this article indicate some improvement, both in terms of increased participation and increased awareness of the usefulness of a participatory approach in several countries. Civil society, often harsh critics of government, acknowledge as much in their UNGASS debriefing report: “in some countries, community sector involvement is increasingly comprehensive and meaningful, whereas in others it remains minimal or tokenistic. For the majority of contexts, however, the experience lies somewhere between the two-with civil society involved but in a relatively inconsistent and unsystematic manner, and in many cases, only invited to ‘legitimize’ the process.”16 In other words, the trend is positive, but there remains room for further improvement.
It is not possible to ascertain from the UNGASS data whether civil society participants were “token” participants or whether the national reports did not reflect the full spectrum of voices of civil society in a country not all of which could be reflected in a national report. Although the UNGASS process is not perfect, the intentional inclusion of civil society in an official global public health reporting process is groundbreaking.23
The 2008 UNGASS reporting round provided important opportunities for civil society organizations to enter into dialogues with governments on progress toward the UNGASS commitments. In countries with little history of multistakeholder collaboration (such as Vietnam), the unprecedented manner in which civil society actors were included, may be the most immediate and tangible result of the UNGASS process. Yet even in countries with established mechanisms for interaction between government and civil society (such as Brazil), the latest UNGASS reporting round was the first to substantially involve civil society. No doubt this was facilitated by the NCPI, which is the only UNGASS indicator that explicitly requires responses from nongovernment representatives. In some countries, the existence of established mechanisms for interacting with civil society actors facilitated their involvement in the UNGASS reporting process. There, and elsewhere, participation often stemmed from initiatives taken by the community sector.
An important challenge for civil society is the selection of representatives who have the capacity and time to actively engage in processes such as these. One of the main barriers to civil society participation is a general lack of experience with engaging in national level processes.2,18 Tailored training might be needed to achieve a better understanding of what such engagement entails and how to optimize involvement in formal governmental environments. Language and jargon may also pose barriers. It is important to set aside resources to translate essential documents into local languages and to develop summary documents in lay language, free of technical jargon. The additional time needed for these “translations” should be build into the overall schedule for timely submission of the UNGASS report.
Innovative ways to support broader consultation may need to be employed. The civil society debriefing noted, for example, the use of a web blog in the Philippines and an e-column by the China HIV/AIDS Information Network. The latter provided a focal point for the posting of information and contributed to achieving input on the NCPI from 108 civil society groups from 20 provinces. However, internet coverage is uneven across the globe-a reminder that it is not an ideal participation tool everywhere. Lengthier schedules for the preparation of UNGASS reports could also help enhance consultation with civil society. For example, Indonesia allowed more than 6 months for a successful consultative process.
Subpopulations most affected by HIV are still unevenly included in the reporting process. These subpopulations are often highly marginalized and may be involved in criminalized behaviors. An appropriate legal framework needs to be in place to facilitate participation. Recent experience shows that a participatory approach is feasible. In Nepal, for example, the national task team involved people who use drugs. In Kenya, the government appointed a specific Civil Society and Most-At-Risk Engagement Committee, which includes general community sector groups, sex workers and men who have sex with men.18
Active and meaningful participation also requires equity and transparency; broad representation and access to resources for effective coordination within constituencies; shared ownership and responsibility but at the same time maintaining independence; and access to information and technical support to enable full participation.15 The NCPI does not reveal to what extent those basic principles are being met. But the examples from the in-depth country case studies and the civil society debriefing suggest that the picture varies considerably between countries.
An appropriate understanding of what is expected from different stakeholders in a participatory approach needs to be explicitly discussed and agreed, not only in relation to UNGASS but also other collaborative processes in country. For example, the large turnout of civil society representatives at the UNGASS review meetings in Ethiopia indicated a desire to be involved in the process. Yet, some interviewees did not recall their engagement with the process, which raises questions regarding the extent to which they were indeed involved and/or understood their role in the process.
Fundamental differences between government and civil society persist regarding collaboration and participation. The civil society debriefing report concluded that, in some contexts, the lack of involvement of civil society organizations in the UNGASS process reflected their lack of involvement in national HIV responses.18 The NCPI data presented in this article indicate that, although there has been improvement since 2005, civil society still believes it has limited involvement in processes beyond national planning. Specifically, its access to resources for service delivery and its capacity to monitor and evaluate its own progress is seen to be limited.
There were also instances of dissatisfaction with the “official” reporting process and/or the report's content which, in some cases, led to the drafting of “shadow” reports. Linked to the 2006 UNGASS reporting round, civil society groups in 33 countries (from all regions except East Asia and Oceania) submitted “shadow” reports. In 2008, 15 civil society reports were received, only some of which were “shadow” reports (the others focused on data that were additional to the UNGASS requirements).
Going Beyond UNGASS Reporting
The utility of both the UNGASS process and the actual reports seem to be better understood at both government and civil society levels than in previous reporting rounds.
For example, in Ethiopia, the UNGASS report was appreciated as uniquely multisectoral and encompassing information from a range of data sources. The special features of the NCPI were also recognized: it can be used as a tool to pinpoint gaps in policy and legal frameworks, identify barriers to effective service provision and facilitate the sharing of information about those policies, strategies and laws. In Botswana, for example, the NCPI helped to reveal major knowledge gaps about existing policies and to what extent they are implemented, especially for stakeholders at subnational and civil society levels [Gill W, MSc, oral communication]. Because policies, laws and guidelines often are not easily accessible, an important function associated with completing the NCPI is the collation of relevant documents in an easily accessible manner. This not only facilitates validation of the NCPI data but also encourages their use beyond UNGASS reporting.
In Vietnam, where an institutionalized review of the national HIV response is not yet in place, UNGASS reporting currently substitutes for such a process. The approach used for completing the NCPI, for example, also provided a basis for examining certain HIV-related policy issues. The Ministry of Health is considering using a similar approach to review other public health policies.
Several suggestions were made by those interviewed in the 3 country case studies about the utility of UNGASS reports for government, civil society and international agencies/donors beyond routine reporting to the United Nations General Assembly. For example, national AIDS commissions can use the reports for advocacy with other sections of government to overcome gaps in multisectoral planning and operations. UNAIDS country offices can use the reports as a coordination tool and for soliciting donor funding support. Conversely, it is hoped that donors would use the reports to target their support more effectively. For civil society, the reports can serve as tools for supporting government accountability and identifying priorities in civil society's contributions to national responses.
Some early evidence also suggests that the UNGASS reporting process may have other positive spill-over effects. In the Dominican Republic, for example, a Permanent Committee for UNGASS follow-up was created in 2006 and has been providing technical support to a range of processes, including strategic planning, target-setting for universal access and UNGASS Report preparation. In many cases, there are existing bodies that can play a key role in the UNGASS review. In Indonesia, the process was led by the national monitoring and evaluation (M&E) technical working group, an approach that allows for better integration of the UNGASS process into ongoing M&E activities.
UNGASS indicator data provide some of the “vital signs” of countries' HIV responses.24 But it is important also to recognize that the global UNGASS indicators do not cover the entire task of monitoring in-country progress on the DoC. Such extensive monitoring requires fully functioning monitoring and evaluation (M&E) systems that provide a complete range of data to guide evidence-based planning, resource allocation and program improvement. In-country stakeholders need to assume responsibility for adequately monitoring all HIV-related commitments. For example, Gestos, a NGO based in Brazil, has mobilized more than 400 organizations in 16 countries to assess progress in improving the sexual and reproductive health and rights of women, areas which are considered crucial for tackling the HIV epidemic. The project developed a data collection instrument based on the contributions from various civil society organizations and held fora where the information could be shared and analyzed collectively. It also provided support for capacity building and community mobilization. Gestos used the UNGASS reporting requirement as an opportunity to launch this additional data collection and to advocate for the inclusion of the data in the UNGASS Country Progress Reports. The Gestos reports were incorporated in the UNGASS Reports of 6 countries, whereas 7 reports were submitted to UNAIDS as separate civil society reports.17
Conclusions: Moving Forward
The 2008 UNGASS reporting round exhibited important civil society involvement. Consultation with civil society occurred in almost all countries that provided NCPI data, and civil society respondents frequently outnumbered other participants in the process. Examples of constructive discussion with government partners were noted, some of which had beneficial effects beyond the UNGASS report itself. Progress has also been made in civil society involvement in the HIV response itself. Civil society representation is now almost routinely included in national coordinating bodies and/or mechanisms. The momentum achieved via the UNGASS process should now be maintained with follow-up actions that can formalize partnerships, enhance active and meaningful engagement and address data gaps. Reporting on UNGASS indicators is a small step in what should be an ongoing and fully institutionalized process of planning, implementation, monitoring, taking stock and making corrections.
The findings of the 2008 UNGASS Reports can be used to prioritize civil society's contributions to national HIV responses. It is also an opportune time to agree on a recommended calendar of action and to prepare a budget for the next UNGASS reporting round, including key milestones for consultation. Governments and civil society alike can make clear and compelling cases to their constituencies of what UNGASS monitoring involves, why it matters and how it links to other commitments (such as universal access)-especially in countries where reporting in the 2008 round was limited or absent. South-to-South efforts should focus on countries where governments appear reluctant to acknowledge or address subpopulations that are most-affected by HIV. Those efforts should include the provision of tangible support for bringing those populations into the collaborative processes in support of effective HIV responses, as done successfully in many countries.
1. United Nations. Declaration of Commitment on HIV/AIDS. United Nations General Assembly Special Session on HIV/AIDS, 25-27 June 2001. New York, NY: United Nations; 2001.
2. UNAIDS. The essential role of civil society. In: Report on the Global AIDS Epidemic. A UNAIDS 10th Anniversary Special Edition. Geneva, Switzerland: UNAIDS; 2006: 202-222.
3. Zuniga J. The contribution of civil society. In: Beck J, Mays N, Whiteside A, et al, eds. The HIV Pandemic: Local and Global Implications. Oxford, United Kingdom: Oxford University Press; 2006:707-719.
4. UN Reform Report (2004). We the Peoples: Civil Society, the United Nations and Global Governance. Available at: http://www.un.org/reform/panel.htm
. Accessed April 24, 2009.
5. Callan M, Turner D. A history of the people with AIDS self-empowerment movement. Body positive X (12). Available at: http://www.thebody.com/bp/dec97/dec97-ix.html
. Accessed April 24, 2009.
6. Berkman A, Garcia J, Munoz-Laboy M, et al. A critical analysis of the Brazilian response to HIV/AIDS: lessons learned for controlling and mitigating the epidemic in developing countries. Am J Public Health
7. Siplon P. AIDS and the Policy Struggle in the United States
. Washington, DC: University Press; 2002.
8. Atlani-Duault L. Au bonheur des autres: anthropologie de l'aide humanitaire
. Paris, Nanterre University: Societe d'Ethnologie; 2005.
9. Burja J, Baylies C. Responses to the AIDS epidemic in Tanzania and Zambia. In: Burja J, Baylies C, ed. AIDS, Sexuality and Gender in Africa: Collective Strategies and Struggles in Tanzania and Zambia
. London, United Kingdom: Routledge; 2000:25-58.
10. Morna C. Southern African NGOs seize the initiative. WorldAIDS
. 1990; 12:5-9.
11. Roberts R, Hickey A, Rosner Z. The role of community involvement in HIV programmes in South Africa. In: Beck J, Mays N, Whiteside A, ed. The HIV Pandemic: Local and Global Implications
. Oxford, United Kingdom: Oxford University Press; 2006:721-733.
12. Sidaction, UNAIDS/WHO. Expanding Access to HIV Treatment Through Community-Based Organizations
. Geneva, Switzerland: UNAIDS Best Practice Collection; 2005.
13. Achmat Z. The Treatment Action Campaign. HIV/AIDS and the government. Transformation
14. Public Health Watch. Civil Society Perspectives on HIV/AIDS in Nicaragua, Senegal, Ukraine, the United States, and Vietnam
. New York, NY: Open Society Institute; 2007.
15. International Council of AIDS Service Organizations (ICASO). In-country monitoring of the implementation of the Declaration of Commitment adopted at the UN General Assembly Special Session on HIV/AIDS: A Four Country Pilot Study
. Toronto, Canada: International Council of AIDS Service Organizations; 2004.
16. International Council of AIDS Service Organizations (ICASO). Community Monitoring and Evaluation Implementation of the UNGASS Declaration of Commitment on HIV/AIDS
. Toronto, Canada: International Council of AIDS Service Organizations; 2006.
17. Villela W, Nilo A. UNGASS AIDS Forum. Monitoring UNGASS-AIDS Goals on Women's Sexual and Reproductive Health: Comparative Report
. Recife, Brazil: Gestos; 2008.
18. International Council of AIDS Service Organizations (ICASO). Declaration of Commitment on HIV/AIDS and Political Declaration on HIV/AIDS: A Review on Progress From the Community Sector
. Toronto, Canada: International Council of AIDS Service Organizations; 2008.
19. Gruskin S, Ferguson L. Supporting countries to Prepare for The Next Round of UNGASS Reporting: Human rights and The NCPI
. Boston, MA: Program on International Health and Human Rights, Harvard School of Public Health; 2009.
20. Peersman G, Rugg D, Erkkola T, et al. Are the investments in national HIV monitoring and evaluation systems paying off? J Acquir Immune Defic Syndr
. 2009;52(Suppl 2):S87-S96.
21. Mathers BM, Degenhardt L, Nashkhoev M, et al. Estimating the level of HIV prevention coverage, knowledge and protective behavior among injecting Drug Users: What does the 2008 UNGASS reporting round tell us? J Acquir Immune Defic Syndr
. 2009;52(Suppl 2):S132-S142.
22. Wade A, Kane C, Diallo P, et al. HIV infection and sexually transmitted infections among men who have sex with men in Senegal. AIDS
23. Warner-Smith M, Rugg D, Frescura L, et al. Monitoring the 2001 declaration of commitment on HIV/AIDS. J Acquir Immune Defic Syndr
. 2009;52(Suppl 2):S77-S86.
24. UNAIDS. Report on the Global AIDS Epidemic
. Geneva, Switzerland: UNAIDS; 2008.